Issue 1 - Epilepsy Australia

Transcription

Issue No. 1, 2009
Award winning artist
Sylvia Serville
her inspiring story
 Consumer update: AEDs and the risk of switching
 AEDs & bone health  VNS: changing lives  Ketogenic diet
 Regional success for JECA  Epilepsy Congress Melbourne 2010
WELCOME
Welcome to the latest edition of The Epilepsy Report.
It is quite common practice to be asked if we would like
a cheaper brand of medicine when we have a prescription
CONTENTS
5 Special feature
dispensed. Maintaining health is a costly business and the
Consumer update:
chance to save a few dollars, especially in today’s economic
Weighing the costs of
switching AEDs
climate, is very appealing. However for people with epilepsy,
saving a few dollars today may prove to be a costly decision if
seizure control is compromised. In our special feature Professor
Frank Vajda explains why switching AEDs may not be in the
best interest of people taking antiepileptic medication.
Living with seizures can be challenging. Gustav, Sylvia,
Allison, and Romy and her family have, in their own way, faced
these challenges and their stories are truly inspiring.
The IBE Regional elections have just been conducted and
for the first time Australia will have representatives on the
Western Pacific Executive Committee: Robert Cole as Chair,
an myself as Secretary. It will be an exciting time as we prepare
7 Sylvia Serville
her journey of self
discovery
13 Allison Johnston
for the 8th Asian & Oceanian Epilepsy Congress to be held
in Melbourne, 21-24 October, 2010. Included in this congress
how VNS
changed her life
will be a separate programme for people with epilepsy, their
carers and for those working with people with epilepsy. The
programme is under development and will be announced in
the coming months. I encourage anyone living with epilepsy,
working with people with epilepsy, or with an interest in epilepsy
to come along and participate in what will be an unforgettable
Gustav Nyberg
14
finding me...
experience.
18 Robert Mittan
Editor
part two on how to
‘beat bad seizures’
This edition of The Epilepsy Report has been funded through an
educational grant from Janssen-Cilag Australia
The Epilepsy Report is published
by Epilepsy Australia Ltd
818 Burke Road
Camberwell VIC 3124 Australia
Tel: 02 9674 9966
epilepsy@epilepsyaustralia.net
www.epilepsyaustralia.net
Views expressed and information
included herein do not necessarily
reflect official policies of Epilepsy
Australia. Articles covering
medical aspects are not intended
to replace competent medical, or
other health professional advice.
All content is copyright and may
not be reproduced without prior
permission. Contributions are
welcome. The Editor reserves the
right to edit content for reasons of
space or clarity.
Epilepsy Australia Affiliates:
Epilepsy ACT
Epilepsy Queensland Inc
Epilepsy Association of SA/NT
Epilepsy Association of Tasmania
Epilepsy Foundation of Victoria
Epilepsy Association of WA
National Epilepsy Helpline
1300 852 853
2
THE EPILEPSY REPORT MAY 2009
24 Romy’s story
living with Dravet Syndrome
JECA success in regional elections 3
New imaging technique for epilepsy 6
PLUS
Editor
Denise Chapman
Contributing Editors
Dr Frank Vajda, Fiona Tito,
Robert Cole.
Contributors
Genevieve Costigan,Gustav
Nyberg, Dr Sandra Petty,
Patricia Scales,
Prof John Willoughby.
Photography
Dreamstime.com
Print Pegasus Print Group
Computer modelling & pharmacogenomics
Tribute to Kay Elphinstone
8
Epilepsy First Aid: 20 languages
Research at Flinders: part 4 9
AEDs: bones & fat 10
8
12
Creative Sparks art awards 16
Ketogenic diet explained 26
Congress announcements 28
From the library 39
face2face with Wayne Pfeiffer 31
Vagus Nerve Stimulation
7
JECA success in IBE
regional elections
E
very fours years elections are held
for positions on the IBE Regional
Executive Committees.
Australia is part of the Western Pacific
Region which includes the member
countries of China, Mongolia, Japan,
Korea, Taiwan, Singapore, Malaysia,
Philippines and New Zealand.
Elections for the new term of office,
2009-2013, were recently held, and we
are proud to announce that Robert Cole,
Chief Executive Officer of the Epilepsy
Association of South Australia and the
Northern Territory was elected Chair
of the Western Pacific Region. Denise
Chapman, who carries the dual role of
Executive Officer of the Joint Epilepsy
Council of Australia and of Epilepsy
Australia, was elected Secretary.
Dr Yuan-fu Tseng, from Taiwan, was
elected Vice-Chair.
The aims and objectives of the
Regional Executive Committee includes
support existing members within the
region by providing a forum for the
exchange of information, expertise and
experience while seeking to encourage
the development of new Full and
Associate members in the region.
A/Prof Ernest
Somerville honoured
with prestigious
international award
The Ambassador for Epilepsy Award,
given jointly by the International
Bureau for Epilepsy (IBE) and the
International League against Epilepsy
(ILAE), recognizes outstanding personal
contribution to activities that advance
the cause of epilepsy.
Nominated for his work in epilepsy
care, teaching and training in Australia,
East Timor and South East Asia, A/
Prof Ernie Somerville will be presented
with his Ambassador award at the
International Epilepsy Congress in
Budapest in July.
Epilepsy Australia congratulates
A/Prof Somerville on being a very
worthy recipient of this award.
When asked about his goals as the
incoming Chair, Robert said “ I will
work hard to coordinate IBE activities,
organize forums, increase regional
membership, and work closely with the
region’s members to build on the work of
previous executives to continue to raise
epilepsy awareness and reduce stigma in
the region.
“We acknowledge and thank the
outgoing committee, Dr Hidemoto
Kubota, Dr Andrew Pan and Dr Yuan-fu
Tseng for their work which increased
epilepsy awareness in the region and
provided education over the last four
years. I congratulate Dr Tseng on his
re-election which will ensure continuity
and value to our new team because of his
experience.”
Denise sees her role as Secretary as
an opportunity to work more closely
with regional members and to further
strengthen Australia’s already close ties.
“I am particularly looking forward
to working with regional members to
develop an interesting, informative
and inclusive programme on behalf of
the IBE for the 8th Asian & Oceanian
Congress in Melbourne next year,” said
Denise.
This is an exciting development for
the Australian epilepsy movement as
we further our engagement with the
Western Pacific region.
Robert Cole, Chair
Western Pacific Region
Denise Chapman, Secretary
Western Pacific Region
Dr Mike Hills, NZ
awarded IBE-ILAE
Social Accomplishment
Award
Epilepsy Australia congratulates
Dr Mike Hills from New Zealand on
being awarded the IBE-ILAE Social
Accomplishment Award. This award
recognizes Mike’s outstanding personal
contribution to improving the quality of
life for people with epilepsy and their
families.
Mike has served the epilepsy
community both in New Zealand as Past
President of Epilepsy New Zealand, and
Dr Mike Hills
internationally as IBE Vice President and
as IBE Secretary-General. He received
an Ambassador for Epilepsy award in
1999 and ONZM for his work for people
with epilepsy and in the community in
2002.
3
consumer
update
Weighing up the costs of
switching AEDs
H
ow many times have we been
asked by the pharmacist would we
prefer the cheaper brand if available?
Almost every time we get a prescription
filled. The chance to save a few dollars
is very appealing, especially when there
are several prescriptions being dispensed
at the same time, but are we making an
informed decision. Are generic drugs as
safe and effective as the original brands?
Why generics?
The development of any new drug is
extremely costly as it can take a decade
to be rigorously tested and evaluated
before it is approved for manufacture
and distribution.
To help recoup this enormous
investment, the pharmaceutical company
that developed the drug has the sole
rights, or patent, to manufacture and
distribute the drug under its chosen
name for a determined amount of time
under the law. This is how brand names
become well known and trusted.
When the patent expires, so do these
exclusive rights. Other pharmaceutical
companies are able to produce their own
version, or generic formulation, of the
drug, market it under a different name
and, without the cost of development, at
a cheaper price.
4
Are the drugs the same?
For a generic drug to enter the market,
its manufacturer must successfully
demonstrate to the Therapeutic Goods
Authority (TGA) that the generic drug
has similar absorption, distribution,
metabolism and excretion rates as
the branded drug, in other words it is
bioequivalent to the original, before
it can be produced and marketed,
and considered for listing on the
Pharmaceutical Benefits Scheme (PBS).
During the manufacturing process the
active ingredients of the generic drug
remain the same as the original, but the
inactive ingredients such as lactose, dyes
and gluten will be slightly different,
changing the physical components of the
medicine. These may include the shape,
colour or texture of the drug.
For the majority of medicines, changes
to these inactive ingredients do not alter
overall bioequivalence and it is deemed
a safe substitute for the branded drug.
A common example is painkilling
medicines.
But for some drugs, even subtle
changes in the inactive ingredients
may have significant effects. These
drugs, which include antiepileptic drugs
(AEDs), are described as having a
narrow therapeutic window – that is the
range between the lowest dose that has a
positive effect (controlling seizures) and
the highest dose before the side effects
(toxicity, and/or increase in seizure
activity) outweigh the benefits of the
drug, is quite narrow.
Neurologists specializing in the
treatment of epilepsy have raised
concerns as to whether standard
bioequivalence testing for AEDs is
rigorous enough.
In standard bioequivalence testing, the
two drugs being compared are deemed
bioequivalent if the tests show that they
are statistically less than 20% different.
Given the narrow therapeutic window
in AEDs, a 20% difference between
how the drug works in the body has the
potential to cause side effects. If the
generic formulation has 20% greater
absorption than the branded drug, it has
the potential to produce a toxic effect.
If the generic has 20% less absorption,
it has the potential to affect seizure
control and the patient may experience
breakthrough seizures.
Respected neuropharmacologist and
epileptologist Professor Frank Vajda
explains this concern.
‘Antiepileptic drugs are a special
case of drugs, which have a narrow
therapeutic index. This means that the
dose of the drug which is effective in
preventing seizures is only a fraction
above that which may not be effective or
may produce unwanted effects.
‘It is therefore important that the drugs
should be used in the same effective
dose, a stable therapeutic dose, as they
have been in the past, keeping the person
with epilepsy seizure-free.
‘The problem is that generics are
tested only superficially and, in the
opinion of many, this process is
inadequate.
‘The process involves a small number
of volunteers – not patients with
epilepsy – being given a single dose of
the generic drug – not multiple doses,
and not repeatedly – to compare plasma
levels, but not effectiveness, on the basis
of the 20 per cent rule. This implies that
if the blood level over the short period of
testing is above or below 20 per cent of
the blood level achieved by the designer
drug, the two types of drug are regarded
as “bioequivalent”.
‘However no account is taken of the
severity of illness, other drugs present
and multiple other factors that affect
blood levels. This testing criterion in
any case is flawed, as we are treating
patients, not blood levels.’
Branded vs generics?
The information presented here is
not intended to question the efficacy of
generic AEDs in their own right. It is
not the prescribing of generic AEDs that
appears to be the problem, it is switching
between brands.
When AED therapy is initiated, the
neurologist will prescribe the most
appropriate drug to treat that particular
type of epilepsy. This may be a branded
AED or a generic AED, however
once the person is stabilized on that
formulation, it should not be switched.
Expert bodies including the Epilepsy
Society of Australia, the American
Academy of Neurologists, the National
Institute of Clinical Excellence (UK) and
the Scottish Intercollegiate Guidelines
Network, all advise that a patient with
well controlled epilepsy should not have
the preparation of drug, whether generic
or branded, substituted.
Is switching AEDs risky?
Switching between formulations of
AEDs, whether it be branded to generic,
generic to branded, or generic to generic,
has the potential for devastating
consequences for people with well
controlled epilepsy.
Risks associated with switching
AEDs include breakthrough seizures
causing injury, loss of employment and/
or driver’s license, an accident while
driving, and a loss of faith in medication,
and psychological distress; toxicity
and associated side effects; avoidable
hospitalization, and increased doctor
visits in order to regain seizure control.
In discussing this point, Professor
Vajda acknowledges that ‘formal
studies to show breakthrough seizures
on changing to generics are scanty, as
they are not a financial proposition for
companies. However, anecdotal reports
of seizures after a switch are numerous.’
Professor Vajda cautioned, ‘The
treatment for a person with epilepsy
ought not to be changed, changing from
one preparation to another is a major
alteration. This may also work the other
way. If a patient is on a generic drug,
changing him or her to the branded drug
may be fraught with a similar risk of
destabilization. Hence switching is ill
advised and may be dangerous.’
In patients with poorly controlled
epilepsy, it is reasonable for your
neurologist to suggest that you switch
AEDs, either to a generic or branded
form. However, this will be done under
medical supervision as there will be
an appropriate crossover period for
the drugs, when the dose of the old
will decrease and the dose of the new
will increase until the therapeutic dose
is reached. This is quite different to
switching formulations at the time the
prescription is dispensed.
As with all medication switches,
there is also the risk of the consumer
becoming confused as the drugs differ
in appearance, name, colour, shape and
size, smell and taste.
With many generic formulations
of a branded AED now available this
is a real concern, an example being
lamotrigine. Apart from the branded
drug Lamictal™, there are nine
different generic formulations that can
be dispensed, raising other issues of
concern. Professor Vajda elaborates,
‘Having several drugs representing
the same components, may also cause
confusion, especially in the frail and
elderly, and those with a cognitive
disability. It may lead to no-compliance
and to storing different preparations
of antiepileptic drugs in medicine
cupboards and, after the urging of
relatives and doctors to comply with
instructions, this may lead to overdose
or further confusion.’
What price do you put on
seizure control?
Maintaining health, is a costly
business. As consumers we are always
looking to save money on that headache,
hayfever or flu tablet and generic
formulations often provide that saving.
Under the Pharmaceutical Benefits
Scheme (PBS) the maximum cost
for a pharmaceutical benefit item at
a pharmacy is generally $32.90 for
general patients and $5.30 for concession
patients. The PBS minimum pricing
policy states that only the cheapest
products of a particular medicine are
available for substitution. The difference
between the cheapest product (generic)
and the more expensive branded drug is
known as the brand premium.
In the case of AEDS, if you choose
the branded AED over the generic
formulation, it will cost you an extra
$1 to $3 per prescription. Currently in
Australia this applies to four branded
AEDs: Tegretol, Neurontin, Lamictal
and Epilim.
So the next time you have your
prescription dispensed at the pharmacy
and the assistant asks you if you would
like the cheaper brand, ask yourself the
following questions,
‘Is saving a few dollars worth the risk
of potentially having a breakthrough
seizure and its possible consequences
of accident or injury, loss of driving
license, loss of work time or even loss of
employment?’
‘What cost do I place on seizure
control and peace of mind?’
For people with epilepsy, the potential
costs of switching AEDs far outweigh
the few dollars saved.
Epilepsy Australia urges
people with epilepsy to:
Know the brand name of
the AED you were originally
prescribed
Pay close attention to every
prescription dispensed and
query if it is different from your
usual prescription
Refuse substitution if asked at
the pharmacy
Request your doctor to check
the Brand substitution not
permitted box at the time of
prescribing
5
New imaging agent
pinpoints seizure
focus
AUSTRALIAN
researchers are
pioneering a technique
to accurately pinpoint
the area of the
brain that causes
seizures, which could
allow more people
with epilepsy to
undergo life-changing
neurosurgery.
*The study is being conducted
by the University of Melbourne/
Royal Melbourne Hospital with
contributions from the CRC for
Biomedical Imaging Development
Ltd (CRCBID) which includes the
Australian Nuclear Science and
Technology Organisation (ANSTO)
and Peter MacCallum Cancer
Centre, which worked together to
prepare 18FMZ; and commercial
radiopharmaceutical supplier
Cyclotek, which could eventually
market and supply the product.
6
F
or three per cent of Australians
with epilepsy, early results in a
clinical research study* of a new nuclear
medicine imaging agent, 18F labelled
Flumazenil (18FMZ) for Positron
Emission Tomography (PET) imaging,
promises better treatment by more
accurately pinpointing the area of seizure
in the brain.
The results of the study were presented
at the recent ANZ Nuclear Medicine
conference held in Sydney.
The clinical director of the
Co-operative Research Centre for
Biomedical Imaging Development, Dr
Rob Ware, said the breakthrough could
help patients with poorly controlled
epilespy.
“By being able to exactly see where
the seizure point is, doctors can more
accurately prescribe and monitor
treatment or recommend surgery,
ultimately improving the lives of patients,
who often have significant medical
psychological and economic difficulties
as a result of their disorder,” he said.
“Currently one third of epilepsy
patients cannot be adequately controlled
with medications, or the drugs lead to
unacceptable side effects.
“Although neurological surgery can
be a very effective treatment for these
medication-resistent patients, surgery
can only be applied in a small proportion
because of problems localizing the
source of the seizure” he said. “The
radiopharmaceutical 18FMZ may help to
solve this issue.
“The current situation is that MRI
cannot identify the seizure focus in a
significant number of patients. 18FDG
PET is helpful in many of these MRI
negative patients but it often shows a
relatively wide area of abnormality. This
area does not need to be totally surgically
removed for effective seizure control
and FDG PET scan abnormalities can
be very subtle, complicating image
analysis,” said Dr Ware.
The head of radiopharmaceutical
research at ANSTO, Dr Ron Weiner,
explained that for many years strong
evidence has shown that seizure foci can
be accurately localized by PET scans
using FMZ, even when these patients
had inconclusive MRI and 18FDG PET
findings.
“To date however, FMZ PET studies
have used the radioactive tracer 11CFMZ but radioactive carbon (11C), used
to synthesize this PET radiotracer has
only a 20 minute half life. Therefore,
it is radioactive for a very short period
time and can not be transported.” he
said. “This practical limitation confined
11C-FMZ PET scanning for epilepsy
patients to the few research centres that
have sophisticated radiotracer synthetic
capabilities plus an onsite cyclotron. a
type of particle accelerator tht makes
isotopes suitable for PET imaging”.
“The challenge for ANSTO and
our other CRC colleagues at Peter
MacCallum Cancer Centre was to
replace the fluorine atom in this
molecule with an atom of radioactive
18-fluorine,” Dr Weiner said.
The team has been successful in
meeting this challenge replacing the
fluorine atom in this molecule with an
atom of radioactive 18-fluorine, which
extends the half-life to 109 minutes
enabling it to be transported to other
hospitals and research centres thereby
reaching a much larger number of
patients.
A
new computer model which may
predict the outcome of drug
treatment on epileptic patients has been
developed by a student from University
of Melbourne.
The student, Slave Petrovski, recently
graduated from his honours year in
Medicine, in a research department of
the University at the Royal Melbourne
Hospital.
Under the joint supervision of Dr
Cassandra Szoeke and Professor Terence
O’Brien, Mr Petrovski brought his
unusual background in Information
Systems and Science to a project
investigating pharmacogenomics (the
tailoring of a medicine regime to take
into account the particular genetic
make-up of a patient) in epilepsy
treatment.
This project is of major international
significance for the field of
pharmacogenomics as it is the first time
such a model utilizing multiple genetic
markers has been applied to successfully
predict the outcome of drug treatment
for any disease.
It represents an important step on the
road to the development of clinically
useful biomarkers of treatment outcome.
“Although the model was developed
for epilepsy it is generic enough so that
it could be used for other conditions,’
Mr Petrovski says. The methodology
Mr Petrovski developed to identify
predictive genetic markers from
over 4,000 possibilities also has the
potential to identify important genetic
determinants of diseases and treatments.
“Research showed us that clusters of
patients reacted to the same drugs under
the same circumstances which made us
wonder which genes were making the
difference. What was really new in our
approach was that we decided to look at
combinations of genetic markers rather
than individual genetic markers,” Mr
Petrovski says.
“What was also unique to our study
was that our cohort of patients was
newly diagnosed so they hadn’t been on
antiepileptic medication before. This is
important as the fact that the patients
have previously never been exposed to
antiepileptic medication allows us to
control and look at the specific effects of
the various anti-epileptic drugs.”
“We also followed up our patients at
intervals of three months, then at the
Mind
over
matter
Genevieve Costigan
Computer modelling may predict treatment
outcomes for epilepsy. Slave Petrovski’s work has
formed a major component of a patent application
which has speaked significant interest from
international biotechnology and medical diagnostic
companies. See www.neuroscience.org.au
one- and two-year interval to find out
what side-effects they had experienced
on the medication, such as weight gain,
skin rashes and neurocognitive side
effects like depression, anxiety, memory
loss or lack of concentration,” Mr
Petrovski says.
“The ultimate benefit of this line of
research and model is that in future a
patient could turn up at a hospital, have
a genetic test run which would predict
whether they are likely to respond
well to treatment with a particular
medication and then the most effective
drug treatment and care regimen could
be tailormade to the patient’s individual
genetic make-up.”
Epilepsy is one of the most common
serious neurological disorders in
the community and one of the most
complex. It is characterized by recurrent
seizures resulting from abnormal
electrical activity in the brain.
Epilepsy affects more than 400,000
Australians and more than 200,000 of
these people take antiepileptic drugs.
Mr Petrovski’s work has formed a
major component of a patent application
which has sparked significant interest
from international biotechnology and
medical diagnostics companies.
Mr Petrovski has been awarded a
place on the Deans Honour roll for his
efforts in 2007 and in 2008 received
the prestigious Larkins prize, an award
granted annually to the top-achieving
honours student within the department
of Medicine, Royal Melbourne Hospital.
first published in
The University of Melbourne’s
Research Review 2008
7
Kay Elphinstone departs
E
pilepsy Australia and the Joint
Epilepsy Council of Australia
would like to acknowledge the
contribution Kay Elphinstone has made
to both organizations over the past eight
years.
In her role as Manager, Epilepsy
Tasmania, Kay strongly believed that
improved outcomes for people living
with epilepsy throughout Australia could
only be achieved through a strong and
energetic national federation where all
members worked collaboratively sharing
the scarce resources available.
Kay’s determination to secure
improved services for people living
with epilepsy in Tasmania is legendary.
Fearlessly, she once held a protest
‘sit in’ in a local politician’s office to
draw attention to the lack of medical
equipment in regional Tasmania.
Always seeking improved epilepsy
care, Kay was the driving force behind
establishing protocols and delivering
training in the administration of
midazolam for the emergency treatment
of seizures throughout Tasmania.
On the national scene, Kay’s
experience and dedication was well
recognized and respected and in
November 2008 was elected Chair of
the Joint Epilepsy Council of Australia,
occupying this position until January
2009 when she decided to seek new
challenges after dedicating the last
fifteen years to the epilepsy cause.
From all of us at Epilepsy Australia
we wish Kay well in her new endeavours
and that we haven’t lost her
The following is a tribute from Clare
Thorne, who has worked with Kay for
many years at Epilepsy Tasmania.
“It is hard to imagine Epilepsy
Tasmania without Kay Elphinstone.
Kay contributed a huge amount to
Tasmanians living with epilepsy over the
15 and a half years she worked with this
organization, initially as the North West
Field Officer and later as Manager.
No one could doubt her passion,
enthusiasm and commitment and even
when the Association was going through
difficult times – Kay never lost faith.
Her achievements are too numerous
to mention, but it should be noted it
was Kay who instigated the camps
and produced the adult and children’s
information kits. She also worked
extremely hard to secure ongoing
funding which has enabled Epilepsy
Tasmania to not only survive, but to
flourish.
We wish Kay all the very best for the
future and we hope she continues to be
a part of Epilepsy Tasmania in the years
to come”.
supporting communities
R
Lisa Rath, EFV and Zaeneb Abdul Said
8
ecognizing the need for epilepsy
first aid information to be
equally accessible to culturally diverse
groups, the Epilepsy Foundation of
Victoria (EFV), with the support of
two philanthropic trusts, The Ian Potter
Foundation and The Helen Macpherson
Smith Trust, undertook to have Epilepsy
Australia’s Seizure First Aid Guide
together with a brochure outlining
EFV services, translated into twenty
languages.
The Abdul Said family, refugees from
Iraq, have been in Australia for three
years. Saja Abdul Said has uncontrolled
epilepsy along with a number of other
disabilities. The family spent two years
without the right support, in a health
system they did not understand, because
they did not have access to the right
information.
The Abdul Said family were put in
contact with the Epilepsy Foundation
of Victoria (EFV) only last year. Saja’s
mother, Zaeneb, would have found it
very helpful to have had access to the
translated material to both understand
her daughter’s condition and particularly
in knowing more about the EFV and
how it could help her.
With the latest translations, this
information is now available to assist
families like the Abdul Said family, who
are searching for epilepsy information in
languages other than English.
For more information please contact
the Epilepsy Foundation of Victoria on
03 9805 9111.
Research at Flinders
Epilepsy Research Group Flinders University and Medical Centre
Part 4: ‘accelerated cell swelling’ & seizures?
The experiments
Dr Broberg demonstrating accelerated cell swelling
in the Flinders Epilepsy Laboratory.
In the last article from our
laboratory, we described
one of the types of physical
swelling of brain cells in
animals that we artificially
made prone to seizures. We
showed that an increased
level of fast (gamma) EEG
rhythms appeared to be
the cause of this type of
swelling.
In this article, another form
of swelling is described
that we think may be the
immediate cause of seizures.
We call it “accelerated
cell swelling” because it is
characterized by a noticeably
faster rate of increase.
Why we find this especially
important is that this swelling
occurs just before the start
of a seizure – in fact, about
10 seconds before. Here are
the studies that provided us
with this information.
For individuals interested in these articles,
you may email Dr Broberg at
marita.broberg@flinders.edu.au or
Professor John Willoughby at
john.willoughby@flinders.edu.au
As we have described in earlier
articles, we study animals that we have
made prone to seizures in various ways.
In our laboratory, we administer drugs
that can be given intravenously or can be
painlessly injected into the surface of the
brain, and seizures occur within minutes
or hours.
In the studies carried out by Dr
Broberg, the finding of accelerated cell
swelling arose particularly in animals
given brain injections of a chemical
known as fluorocitrate (FC, for short).
FC affects the supporting cells of the
brain (which are known as astroglia).
All nerve cells require the support
of astroglia for their energy and for
their neurotransmitter production. The
chemical we administered (FC) stops
energy production in the astroglia and so
prevents them from functioning. Several
years ago, our laboratory was the first to
show that seizures repeatedly occur after
tiny quantities of FC are injected into the
cortex. Our finding clearly pointed to the
fact that un-healthy astroglia can cause
seizures.
As mentioned in our last article,
we can detect cell swelling using an
electronic technique that measures
‘impedance’. The more cells swell, the
higher is the impedance. The technique
is painless. With the impedance method,
Dr Broberg measured cell-swelling
during seizure experiments. To our
surprise, we detected a fast increase in
swelling over several seconds before
animals had epileptic discharges in
their EEG. A detailed illustration of
accelerated cells swelling is shown in the
figure below.
This surprising finding indicates that
a process associated with cell swelling,
probably triggers seizures. We have
also observed accelerated cell swelling
in rats with other types of artificially
induced epilepsy. In these animals,
increased gamma EEG activity may
also contribute to accelerated cell
swelling. Because this swelling is clearly
demonstrated with seizures due to
astroglial disturbance, we believe that it
is astroglial cells that swell – a question
that we hope will be the subject of our
ongoing research.
For people with epilepsy: what have
we learnt from these experiments?
We have provided here the first clear
evidence that a process to do with
swelling occurs before seizures start. We
believe this process is a key trigger of
seizures. The finding potentially opens
the door to fresh approaches to epilepsy
management, for example, by stopping
astroglia swelling or by improving the
function of astroglia. We suspect that an
improvement in astroglial function, for
example, could be the explanation for the
beneficial effects of the ketogenic diet.
Figure 2. The upper graph shows swelling. It reveals that cells swell 5-10 seconds before a
seizures starts. The middle graph is the EEG: it shows that the seizure spiking begins after cell
swelling starts. The lower panel shows the strength of EEG rhythms – there are no changes at
the time the cell swelling begins.
9
Bones & Fat:
metabolic side effects of
chronic antiepileptic use?
Dr Sandra Petty, Prof. Terence O’Brien and Prof. John Wark
P
atients with epilepsy are often
required to take anti-epileptic
medication (AED) for prolonged periods
of time. This means that they can
experience the very important benefits of
treatment of epilepsy due to prevention
or reduction of seizures, but also that
some may experience side effects of
medications and also co-morbidities
(a second condition associated with
epilepsy itself). Two conditions which
are potentially associated with epilepsy
and its treatment are bone fragility and
cardiovascular disease.
Bone Health
Studies have shown that patients with
epilepsy have a risk of bone fractures
approximately twice that of the general
population. The increased fracture
rate may be due to bone disease, and
increased falls and fractures either
during seizures or at other times. There
are also increasing numbers of patients
taking AED to treat conditions other
than epilepsy. Low trauma fractures
are associated with increased risk of
mortality in older patients1, and are
predicted to create an increasing cost
burden to the community.2
In the 1950s to the 1970s, studies of
bone health in patients with epilepsy
demonstrated rickets and osteomalacia
(where the bones are softened due to
inadequate mineralization). However,
the nature of the bone disease in these
studies was probably influenced by
factors other than AED therapy as
most of the patients studied resided
in institutionalized settings at that
time. These patients were subjected to
many influences that may impair bone
health (e.g. lack of sunlight exposure,
10
nutritional factors, exercise, smoking,
etc.). 3-5 Whether the results would be
similar in community-dwelling epilepsy
patients is a question which is the subject
of ongoing research.
One method of assessing bone health
is by measuring the bone mineral
density (BMD) with a DXA scanner.
The results of this test can then be
compared against normal values for
healthy young adults (deriving a T-score)
to determine whether the bone density
is normal, or whether a patient may have
low bone density, i.e. conditions such as
osteopenia and osteoporosis.
Recent studies of patients with
epilepsy, the majority of whom now
live independently in the community,
have shown a fracture risk of at least
twice that of the general population in
patients taking AED.6 This risk may
be higher than the risk of fracture for
patients taking glucocorticoids, in
whom the problem is well-recognized
and routinely monitored.7 However, the
increased fracture rate is not entirely
explained by a deficit in BMD6 , and the
difference may be due to other factors
including injuries during seizures, and
balance impairment, leading to falls and
fractures.8
Our previous study of communitydwelling female twins and siblings,
where one of each pair had been
prescribed AED for epilepsy or another
condition, and the other had no exposure
to AED (and no reason to be taking
AED, for instance a condition such
as epilepsy, chronic pain or bipolar
disorder) found that some AED users
have significantly lower BMD in
clinically-relevant sites for fracture
risk, when compared to the non-AED-
using twin/sibling.9 In particular,
women who had taken enzyme-inducing
AEDs (e.g. phenytoin, carbamazepine,
phenobarbitone and primidone), who
were aged over 40 years and had longerterm use of AEDs (and the underlying
condition requiring AEDs) had on
average, reduced BMD compared to
their twin or sibling. Whether this
association of AEDs with low bone
density is related to epilepsy, AEDs, a
genetic susceptibility, use of newer or
older AEDs, use of particular AEDs or
other factors remains to be established.
There is increasing use of AEDs in
the community, not only for epilepsy,
but for psychiatric conditions such as
bipolar disorder, and also for treating
migraine and neuralgias. Therefore, it is
of great importance to these patients to
establish the nature of the association of
AED usage and increased fracture rate,
and for clinicians to better understand
the problem, and identify effective,
evidence-based, methods for intervening
and preventing this important problem,
thereby reducing the burden of morbidity
and mortality due to fractures and their
cost to the patient and the community.
Weight and Cardiovascular
Health
AED use is sometimes associated
with a change in total body weight. For
instance, some patients taking valproate
or carbamazepine may experience
weight gain. Theories as to why this
may occur include an increase in food
intake, an increase in insulin levels or
changes in the metabolism of insulin.
The associations with weight gain, such
as effects on cardiovascular health,
may also be of concern, particularly
insulin resistance and type II diabetes
and increased blood pressure, all
predisposing to the development of
cardiovascular disease. It is known that
patients with epilepsy have higher rates
of ischaemic heart disease.10
Reasons for this are not entirely clear,
but some studies suggest that patients
with epilepsy may have lower rates of
exercise, increased body fat and a higher
rate of smoking compared to the nonepileptic population.
Other AEDs, such as topiramate
are associated with weight loss in
some patients, possibly via a loss of
appetite. The mechanisms for AEDassociated weight changes remain to
be fully established, and it is likely that
individual genetic characteristics may
play an important role in determining
which patients are most likely to be
affected. Studies examining specific
AEDs for side effects alongside genetic
profiles are underway and may reveal a
genetic predisposition to some drug side
effects.
It is recognized that changes in
the distribution of body fat have
important health implications which
are independent of total body weight,
specifically the association of increased
proportion of abdominal fat as a risk
factor for cardiovascular disease.
While many studies have examined the
magnitude of weight gain, few have
considered the distribution of fat in AED
users. In a recent study (unpublished
data) we observed an association with
increasing abdominal fat percentage
with long term use of valproate, when
compared to a twin or sibling not on
treatment. This increased abdominal fat
also had some correlation with increases
in blood pressure. Of interest in this
Australian population, there was not a
significant difference in rates of exercise
or smoking between the participants
who were taking the AEDs and their
twins or siblings who did not have
epilepsy or did not take AED. In other
studies of women taking phenytoin
and carbamazepine, there have been
reports of central obesity with estrogen
deficiency. A recent study found two or
more cardiovascular risk factors in 52%
of adult epileptic patients, compared
to 28% of the general community,
and recommended screening for
cardiovascular risk in this population.11
Weight distribution in epilepsy and
cardiovascular risk is an issue which
requires further study; however it would
be prudent for patients with epilepsy to
discuss their cardiovascular health and
risk factors with their doctor.
For women with epilepsy, there are a
number of special issues, including an
association between epilepsy (and some
epilepsy medication) with polycystic
ovarian syndrome and changes in
hormone levels and sometimes some
fertility issues. Epilepsy and pregnancy
is another special issue which is outside
the scope of this article, but all women
of childbearing age who have epilepsy
should discuss this with their doctor.
Possible links between epilepsy and
its treatment with bone health and
cardiovascular health include:
• reduced physical activity which can
affect bones, cause weight gain and
cardiovascular health problems;
• changes in hormone levels
associated with epilepsy, fat
distribution and bone health (such
as low estrogen levels)
• smoking, which can cause
osteoporosis, reduce exercise
capacity and is a risk factor for
cardiovascular disease, and
• low vitamin D levels, which is
discussed in more detail here.
Vitamin D, bone health and
cardiovascular risk
There has been a strong interest in
the role of vitamin D in many disease
processes in recent times. In addition to
the known role of low vitamin D levels
in the development of bone disease,
there have also been associations of
low vitamin D with obesity, high blood
pressure, insulin resistance and type II
diabetes, and cardiovascular disease, to
list some of the metabolic associations.
Whether the associations of low vitamin
D levels seen in some studies of AEDusers 12-15 may be associated with the
metabolic syndrome and increased
cardiovascular risk requires further
study.
For patients with epilepsy, the first
and foremost concern still needs to be
effective control of epilepsy, which
often requires long-term use of antiepileptic medications. An awareness of
some of the possible conditions that may
be associated with of epilepsy and its
treatment is of value for patients so that
they may discuss ways of monitoring
and optimizing their bone health and
vitamin D status as well as reducing
their cardiovascular risk factors with
their treating doctor, while further
research into prevention and treatment of
these problems is carried out.
This article does not constitute clinical
advice. For more information, please speak
with your treating doctor or neurologist.
References
1. Bliuc, D., et al., Mortality risk associated
with low-trauma osteoporotic fracture and
subsequent fracture in men and women. Jama,
2009. 301(5): p. 513-21.
2. Burge, R., et al., Incidence and economic
burden of osteoporosis-related fractures in the
United States, 2005-2025. J Bone Miner Res,
2007. 22(3): p. 465-75.
3. Lifshitz, F. and N.K. Maclaren, Vitamin
D-dependent rickets in institutionalized,
mentally retarded children receiving longterm anticonvulsant therapy. I. A survey of 288
patients. J Pediatr, 1973. 83(4): p. 612-20.
4. Tolman, K.G., et al., Osteomalacia
associated with anticonvulsant drug therapy
in mentally retarded children. Pediatrics, 1975.
56(1): p. 45-50.
5. Lidgren, L., B.E. Nilsson, and A. Walloe,
Bone mineral content in epileptics. Calcif Tissue
Int, 1979. 28(2): p. 99-102.
6. Vestergaard, P., Epilepsy, osteoporosis and
fracture risk - a meta-analysis. Acta Neurol
Scand, 2005. 112(5): p. 277-86.
7. van Staa, T.P., H.G. Leufkens, and C. Cooper,
Utility of medical and drug history in fracture risk
prediction among men and women. Bone, 2002.
31(4): p. 508-14.
8. Ensrud, K.E., et al., Central nervous systemactive medications and risk for falls in older
women. J Am Geriatr Soc, 2002. 50(10): p. 162937.
9. Petty, S.J., et al., Effect of antiepileptic
medication on bone mineral measures. Neurology,
2005. 65(9): p. 1358-65.
10. Annegers, J.F., W.A. Hauser, and S.B. Shirts,
Heart disease mortality and morbidity in patients
with epilepsy. Epilepsia, 1984. 25(6): p. 699-704.
11. Elliott, J.O., M.P. Jacobson, and Z. Haneef,
Cardiovascular risk factors and homocysteine in
epilepsy. Epilepsy Res, 2007. 76(2-3): p. 113-23.
12. Hahn, T.J., R. Shires, and L.R. Halstead,
Serum dihydroxyvitamin D metabolite
concentrations in patients on chronic
anticonvulsant drug therapy: response to
pharmacologic doses of vitamin D2. Metab Bone
Dis Relat Res, 1983. 5(1): p. 1-6.
13. Kulak, C.A., et al., Bone mineral density and
serum levels of 25 OH vitamin D in chronic users
of antiepileptic drugs. Arq Neuropsiquiatr, 2004.
62(4): p. 940-8.
14. Nettekoven, S., et al., Effects of antiepileptic
drug therapy on vitamin D status and biochemical
markers of bone turnover in children with
epilepsy. Eur J Pediatr, 2008.
15. Pack, A.M., et al., Bone health in young
women with epilepsy after one year of
antiepileptic drug monotherapy. Neurology, 2008.
70(18): p. 1586-93.
11
Vagus
Nerve
Stimulation
VNS works on the principle that
seizures occur when there is a sudden
malfunction or ‘short circuit’ in the
nerves that carry electrical impulses
from the brain to the body. A small
device or generator, about the size of a
50 cent coin, is implanted just under the
skin in the upper chest to help control
these electrical impulses. Two thin,
flexible wires are attached to the left
vagus nerve in the neck. The generator
is programmed to send small electrical
pulses to the vagus nerve, which then
delivers the pulses to the brain. This
gentle stimulation helps to prevent the
electrical irregularities within the brain
that cause seizures.
As VNS therapy is not a drug, it produces
no drug interactions. Common side
effects include voice alteration, tickling
in the throat, cough and shortness of
breath. These side effects typically occur
during stimulation and may diminish over
time.
VNS Therapy System™ has been
developed by Cyberonics Inc. For more
information about VNS Therapy visit
www.vnstherapy.com
12
A
lthough patients with disabling,
refractory seizures represent a
small proportion of the population
affected by epilepsy, the impact of
epilepsy on their lives, the lives of
those around them, and the education,
vocation and health systems is
significant.
The first, although crude and external,
vagus nerve stimulator was a creation
1
of J. L. Corning, who, in the 1880s
observed a reduction in seizures in his
patients using his methodology. VNS
was, however, forgotten as a useful
2,3,4
antiseizure therapy until Zabara
began analyzing the effect of VNS in
chemically-induced seizures in the dog.
Since the 1960's VNS has been studied
as a method of inducing changes in
the EEG5. Although the exact mode of
seizure control has not been determined,
the vagus nerve, through its projection
to the nucleus of the solitary tract, is
believed to produce an antiepileptic
effect by modulating the abnormal
neuronal firing associated with seizures.6
In 1988, Cyberonics Inc developed
the VNS Therapy System™ which
includes an implantable pulse generator
and stimulating lead that delivers
electrical stimulation to the left vagus
nerve. The first implant took place in
the United States. Five separate clinical
trials involving ~50 centres showed
a statistically significant reduction in
seizure activity for patients with drug
resistant epilepsy. Regulatory approval
as an adjunct therapy in reducing seizure
frequency was granted in the USA
(1988), in Europe (1994), and in April
2000 in Australia.
Vagus nerve stimulation (VNS) is now
an accepted treatment for patients with
refractory epilepsy. Currently there are
more than 50,000 patients implanted
worldwide with over 175,000 patient
years of experience.
Since the first VNS implant
undertaken in Australia at the Prince of
Wales Hospital, Sydney, in September
1994, approximately 300 patients have
been implanted in hospitals in Sydney,
Melbourne, Hobart, Perth and Brisbane
(11 sites in total). The youngest patients
implanted in Australia have been 3
year-olds, although in the USA babies
as young as 6 months have had devices
implanted. About one third of devices
implanted in Australia are into children
and adolescents (under 18).
The VNS Therapy System is approved
in Australia and throughout the world,
based on well documented evidence of
efficacy, safety and cost-benefit, which is
summarized below.
• Responder rates, ie % patients
obtaining 50% or greater seizure
reduction, for VNS Therapy are
generally of the order of 30-50%. 7
Similar efficacy is seen in focal and
generalized seizures, including more
difficult to control seizure types such
as drop attacks of Lennox Gastaut
syndrome, as documented by Frost et al.8
• VNS Therapy is well tolerated and
associated with quality-of-life benefits.
It is not typically associated with the
common systemic and neurological side
effects of AEDs such as drowsiness,
lethargy, weight gain and cognitive
impairment.9 Rather, studies have
shown that VNS Therapy is associated
with increased alertness, reduced
daytime sleepiness, improved mood and
improved memory.10
• Continuation rates with VNS
Therapy are very high. Ninety-seven
percent of patients continue with VNS
Therapy at one year, and 72% at three
years.11 These rates are much higher than
typically observed with AEDs.7
• The effectiveness of VNS Therapy
does not diminish over time. In clinical
studies, seizure control and quality-oflife benefits with VNS Therapy have
been shown to increase over time.
Furthermore, over time some patients
are able to reduce the dosage or number
of AEDs.
• Because the stimulation is
programmed to occur automatically,
patient compliance is assured.
References
1. Lanska DJ. J.L. Corning and vagal nerve
stimulation for seizures in the 1880s. Neurology
2002;58:452-459
2. Zabara J. Peripheral control of
hypersynchronous discharge in epilepsy. (abstract)
Electroencephalogr Clin Neurophysiol 1985 61:S162
3. Zabara J. Time course of seizure control to brief
repetitive stimuli. (abstract) Epilepsia 1985;26:518.
4. Zabara J. Inhibition of experimental seizures
in canines by repetitive stimulation. Epilepsia
1992;33:1005-1012
5. Brain Research 1967; 5:236-49
6. Epilepsia 1990;31 (2): S1-S7.
7. Morris GL & Mueller WM. Neurology 1999 Nov
10;52:1731-1735
8. Frost et al. Vagus nerve stimulation in children
with refractory seizures associated with LennoxGastaut syndrome. Epilepsia 2001 Sep;42(9):114852
9. Gates J, Huf R & Frost M. Epilepsy & Behavior
2001; Dec;2:563-567
10. VNS Patient Registry, April 25, 2003
11. Ben-Menachem E.Â. The Lancet 2002;1:477482
How VNS changed
Allison’s life
“Sometimes I even have to
remind myself that I have epilepsy!”
P
lagued by seizures for fifteen years,
medication alone could no longer
control Allison Johnston’s seizures,
and her hope of brain surgery to
eliminate the seizures was dashed when
investigations found such surgery would
be too risky for her. There was one
option left – the implantation of a vagus
nerve stimulator (VNS). This was not a
promise of a cure, but a treatment option
that had the potential to greatly reduce
the frequency of her seizures.
Believing ‘anything’s worth a try’,
Allison agreed to give it a ‘go’. In
September 2002 she had the device
implanted and, in her words, ‘got my
life back’.
For years Allison struggled to
find a medication or combination of
medications to control her seizures and
allow her to get on with life, without
debilitating side effects.
‘I experienced skin rashes and welts,
weight gain, and hair loss. I had really
thick hair and to my neurologist at the
time a bit of hair loss didn’t seem an
issue until, at one appointment, I arrived
with a plastic bag full of hair to show
him just how much was falling out on a
daily basis’ Allison recalls.
Her mother, Jean, recalls the first
time she became aware that Allison,
then fifteen, was having seizures in her
sleep. ‘We were travelling by car from
the South Coast to Fraser Island for a
holiday, and whenever Allison fell asleep
she would have a turn. On our return we
saw a doctor, investigations were carried
out, and Allison was diagnosed with
epilepsy.
‘At first Allison was only having
seizures in her sleep, but as time went
on she began to have them when she was
awake as well.’
Determined to embark on a nursing
career, Allison completed the Assistant
in Nursing Certificate at TAFE.
‘But getting a job was a struggle.
As soon as I said I had epilepsy, they
would find a reason as to why I was not
suitable. I had so many knock-backs – I
was shattered for years. However the
places where I have worked have been
understanding and willing to give me a
go’ said Allison.
After a move to Sydney and living on
her own, Allison began to experience
frequent daytime seizures.
‘I was working at a nursing home and
I began to have seizures at work. They
would ring an ambulance and I’d be
taken to hospital. I would wake up and
think ‘oh no, not another one’. Because
I lived alone, I was not allowed to go
home so mum would come up from the
South Coast and stay with me.
‘After this happened a few times, the
Matron decided that I could be taken to a
back room where I would sleep it off.
‘But my seizures changed and became
more frequent. I was 32 when my
neurologist advised me to stop working
and I moved back to the South Coast to
be closer to family. Having to apply for
the disability pension was probably the
worst time of my life.
‘Life was so restricting. I couldn’t
even go shopping on my own in case I
had a seizure; I always went with Mum
who kept an eye out for me and even
then I would ‘go down’ and wake up
with people staring at me.
‘It was a very stressful time for me,
my partner Ian, and my mum’.
‘When I was told that I couldn’t
have the brain surgery, after all the
investigations, I was shattered.
‘Then when the VNS option was put to
me, the decision was easy. I had nothing
to lose. And I am so glad that I did – it
worked! I began to experience less
seizures and with the gradual adjustment
to the settings on the device, my seizure
frequency decreased to 2-3 absence
seizures a week while awake and I still
had seizures in my sleep. By the end of
2003, my overall seizure frequency had
decreased markedly and my neurologist
gave me the OK to go back to work.’
Since receiving the implant, Allison
has been working at the Blue Haven
Nursing Home in Kiama, on the NSW
South Coast, enabling her to relinquish
the disability pension.
In March 2004, Allison and Ian,
her partner of four years, married and
travelled to the US for their honeymoon
‘Life is so good now. I can hold down
a job, run a home, work in the garden,
go shopping on my own, travel, and go
out with the girls from work and not be
frightened’.
Until recently, when Allison
experienced a brief seizure, she had been
seizure-free for two years. But, not to be
deterred, Allison has taken this in her
stride.
‘I was hoping for improved seizure
control, so to experience seizurefreedom has exceeded all my
expectations. I feel blessed and can say
without doubt, this has really turned my
life around.’
13
F inding me...
Gustaf Nyberg
is a young Swedish
actor who has epilepsy.
This is the inspirational
presentation he gave
at the 11th European
Conference on Epilepsy
& Society in Marseille,
October 2008.
M
y name is Gustaf Nyberg and I’m
from Sweden – you know the
country of Ingmar Bergman, Abba and
Zlatan Ibrahimovic.
When I was 13 years old I received
the diagnosis epilepsy. Probably I had it
some years before but it was from that
age that I started to suffer from it. I was
in the beginning of the teenage years
and I was going to become one of the
best football players in the world. I had
just realized that alcohol was something
really interesting, as was nicotine. In
short, there was no room for epilepsy
in my life. I mean, girls, friends and
football were a lot more fun than taking
some medicine morning, noon, and night
that my parents said I must do.
No, no, no, I was NOT a person with
epilepsy, I was going to be a football
player or maybe a journalist. Time would
prove it.
But after a year something else
became a part of life, a part of every
second in my life, except perhaps when
I was sleeping. I developed a psychosis
as a consequence of the epilepsy. Okay,
it was a light version of a psychosis, I
have realized that now, but anyway, I
was not happy. To describe to you how
this psychosis was would take about two
hours, so I will leave that for another
time.
14
But again, epilepsy, and a psychosis as
a part of my epilepsy, would not crush
my dreams. I was called strange in high
school; I was the clown, and that was
my escape many times. The tough guys
said, “Gustaf – say something funny!”
And I would say something funny. They
would laugh and say as they went away,
“that guy is okay, he’s funny; strange
but funny.” Humour was a bright spot
in my life. After school I went home
and watched some funny movies or TV
series that I had recorded. I laughed, I
got warm inside, and I would become
a comedian. Or a football player. Or a
journalist. Time would prove it.
When I was 15 years old I began a
theatre course on ABF, which is an
adult educational association. And I was
home. The course mainly concentrated
on improvisation. I met clowns from
several different high schools in the
suburb where I was living. The clowns,
the lonely clowns, were gathered in
the same place on a theatre course in a
house in Sollentuna, Stockholm in 1994.
And I would become an actor, well a
comedian. An actor. Yes!
A year later I saw an advertisement
in a newspaper that a theatre group
in Solna, another suburb close to
Stockholm, was looking for actors of all
ages for their production of Bacchae by
Euripides. Of course I wanted to play
an old Greek tragedy! So in the summer
of ‘95 we played Bacchae in an old
ruined castle in The Hagapark outside of
Stockholm.
It was a tough time in many ways –
my epilepsy and psychosis were very
active. But I didn’t say a word about it at
the theatre, not as I remember anyway.
And I think that was a solution in the
teenage years for me, not talking about it
– not even to myself.
Another solution was my parents.
They let me live the life that any other
ordinary teenager was living. Of course
they knew that I drank alcohol with my
friends sometimes, and of course they
were worried. And nicotine, of course
they didn’t like it, they tried to help me
to stop it, but I didn’t want to. And of
course they set a certain time that I had
to be home by on weekend nights, but it
was the same time as my friends. And
I had to do my homework as good as I
could, but it was okay to have mediocre
marks. I mean, I was going to become an
actor, didn’t they understand that? Not a
football player, maybe a journalist, but
mainly an actor!
So, now it was time for upper
secondary school. I started a media
class, and I didn’t like it. So after a year
I had to decide if I should continue with
the media course for two more years
or start over again, but this time in a
theatre class. The choice was not too
complicated. So, with a nervous heart I
entered my theatre class in the year of
1996. And from the first day, from the
very first time I opened my mouth, I felt
this is right. I met people with the same
interest and, in many cases, the same
dreams.
Back home where I lived, I still had
the same friends I had had since I was
five years old. The guys from school and
from my football team and so on. The
guys I had talked about girls with, the
guys I had laughed with, argued with,
done nothing on a Friday evening with.
You know just walk around, sit on a park
bench and talk and smoke. And because
I had known them my whole life, my
epilepsy was not a big deal for them.
Anyway, upper secondary school
in the year of 1996. I was leaving four
tough years, unhappy and struggling
years. Three wonderful years lay in
front of me. In 2000 I had left school,
expectant for what life would be like for
me.
The spring of that same year I applied
for theatre university in Gothenburg,
one of four universities in Sweden that
educates actors. I got to the third test of
four; there were around 30 guys left. I
had booked a hotel room in Gothenburg;
I had rehearsed the text I had been
given with an actor in Stockholm; I was
charged. So, I did the physical test in
the morning and was waiting to do my
singing test. After that I woke up in an
ambulance on my way to Sahlgrenska, a
hospital in Gothenburg. Of course I had
had an epileptic seizure.
I was waiting maybe two hours at the
hospital without meeting a doctor. You
know how it is. And I said to myself
“I have the chance of my life. I have
rehearsed a lot and I’m close to fulfilling
my dream. I can’t sit here all day without
meeting a doctor. No, no, no I must go
back.”
And back I went. People of course
asked me how I felt and all that, and
I said “good, good, nothing special.”
Almost in the way I had looked at
epilepsy all my life.
I did my voice test and was again
sitting waiting to do my singing test.
Next moment I woke up in Sahlgrenska
hospital with a doctor looking at me
and two more people around me. I had
had another attack and my dream was
crushed; I could never become an actor.
That was how I felt. This was the start
of 4 terrible years. I had to confront my
epilepsy. And in the beginning it was an
enemy to me. It was a phase I had to go
through I think.
Around 2004 I came to a point where
I suddenly said, epilepsy is a part of me.
Like I have two legs, it’s a part of me,
or I have brown eyes, it’s a part of me.
I stopped struggling against it, and it
was wonderful, so, so wonderful. That
and other things opened doors to a life
I love, to MY life. I realized that I am
wonderful, and that would mean that
my epilepsy is wonderful too. It has
given me knowledge, a knowledge that
has given me understanding of other
persons. Without my tough years – that
came from the way I regarded myself
and my epilepsy – I would not have
known so much about life as I do now.
Thank you tough years for that.
In 2006 I wrote a play called Thanks,
Heaven and put it on in a theatre called
Theatre SAT in Solna near Stockholm.
For me it is a very important play. It is
a story that describes my view of life.
Some people perhaps called it strange
and some people took it to themselves. It
was a summary of five or six years that
I never want to have back, but also years
that I don’t want to be without.
In spring 2009 I will put on a play
called Kingdom Blackness in a theatre in
Stockholm. It’s a political comedy and
maybe I won’t have so much of my own
life in the story. This time it’s maybe
more about my view of life and society.
So if you are in Stockholm in April
2009 you are very welcome to see this
magnificent play!
Today I work on different projects.
Part of the time I work in the healthcare
sector with music, dance and drama. I
am also a personal assistant to two 13
year old guys. And of course theatre
takes a lot of my time. Most of my
friends are involved in theatre and, to be
honest, theatre has helped me a lot and I
am grateful for that. It has given me selfconfidence and a place to call home.
But a lot of different things made
me feel happier with being me. Partly I
started to exercise. I walked for hours.
And walking helped me to solve my
thoughts. After walking for an hour
my problems don’t feel so big anymore.
And I also started to eat healthier food.
Fruit and vegetables. I tried never to go
hungry. I started to drink water instead
of sugary drinks. At the beginning that
was more of an economic decision but it
made me become a little bit calmer. My
pulse rate went down. And after attempt
number 29,000 I finally stopped using
nicotine. I’m still far happier for that,
after 5 and a half years. And a very big
reason was how I slowly began to look
at myself in a different way. To love
myself has taken me 6 years and that
love is still growing. Because it’s a fact,
the more you love yourself, the more you
look at the world and the people around
you with lovely glittering eyes. People
have talked about it for a thousand
years but I want to say it again. It’s not
so complicated. It has been my biggest
solution.
Because we are talking about
achieving goals, and the goals you
achieve are not worth anything in the
long run unless you love yourself, or like
yourself, if you prefer to say that. It is
the basis. By liking yourself you become
strong and not so vulnerable. It’s the
solution.
Finally, as I said before, I even grew
to love my epilepsy. Truly, I mean truly,
love my epilepsy. It’s not just words. My
epilepsy and the things that came from it
have made me wise. Without my crises I
maybe wouldn’t have started working for
myself, or knowing that much about fear
and so on. It has given me yin and yang.
It has made me whole as a human being.
Thank you epilepsy for that!
So – become friends with your
epilepsy, accept it, love it and see what it
has given you.
And then, try to achieve the goals
you want. If you don’t achieve them, try
again, at least your epilepsy won’t stop
you. It can help you. In what way? You
decide.
15
awarded works
www.creativesparks-ep.com
O
Multiple Realities by Denis Gagnon: Premier Artist 2009
Time for Rest by Shea O’Keefe: UCB Purchase Award
Sparkler through Propeller by Caleb Charland
St. Vincent’s Health International Purchase Award
Facet by Nadine Binder:
JTA Associates Purchase Award
16
pening night of the “Creative
Sparks” Art Exhibition at St.
Vincent’s Hospital in Melbourne buzzed
with excitement as 140 people including
many of the artists celebrated the launch
of the art exhibition in-person and
on-line at www.creativesparks-ep.com
“Creative Sparks” displays what
happens in the minds, feelings and lives
of people with epilepsy, a condition
that is too often misdiagnosed and
misunderstood. If a “picture speaks a
thousand words” then this exhibition,
featuring artworks by people with
epilepsy from Australia and around
the world, will bring about a better
understanding of epilepsy and of the
people behind the art.
Forty-seven artworks by people with
epilepsy from around the world were on
display, while a tour through the online
exhibition, revealed the depth of the
collection.
The primary reason why most of the
artists participated in this exhibition
was to promote a better understanding
of epilepsy. While the primary purpose
of the online exhibition was to showcase
the artist’s work, the sponsored awards
recognizes the time and the talent of the
artists who are participating in this and
future exhibitions.
Epilepsy Australia, UCB Pharma,
JTA Australia Pty Ltd and St. Vincent’s
Health sponsored Purchase Awards of
AUD$1,000 for three Australian Artists
and US$1,000 for the International
Purchase Award. The Purchase Awards
compensate those artists for the artworks
that are likely to go on tour and become
part of permanent collections. Purchase
Awards were presented on the night.
Wondering Thoughts by Dotty Pedi
Featured Artist
The successful artists were Sylvia
Serville (Qld), Nadine Binder (NSW),
Shea O’Keefe (Vic) and Caleb Charland
(USA). The prize for the Premier Artist
for 2009, donated by the Epilepsy
Foundation of Victoria was awarded to
Denis Gagnon from Canada. A prize of
$100 was also awarded to 20 Featured
Artists.
This exhibition came about as a result
of a research study called Sparks of
Creativity: The Influence of Epilepsy
and Migraines in Art that forms part of
a PhD thesis by Jim Chambliss. This
research will evaluate how epilepsy and
migraines can influence the creation of
visual art. The aim of this study is to
make an objective evaluation of whether
epilepsy and migraines can, in some
circumstances, stimulate and enhance
creativity. This research will help to
better understand the creative process
and how epilepsy and migraines impact
the lives of people.
In his search for examples of creative
art for his study, Jim has amassed an
amazing collection of artworks from
artists from Australia and overseas. The
Creative Sparks website evolved from
this collection, in part, as a thank you
to those who volunteered to participate
in his study, but also to showcase their
incredible talent to the world at large.
The online exhibition features works by
the various artists accompanied by their
experience of epilepsy that frames their
work and is highly recommended.
The Featured Artists and Awards
Gallery, along with the works of all
participating artists can be viewed at
www.creativesparks-ep.com
Camouflage by Ian Hines
Featured Artist
Waiting by Fiona Pringle
Featured Artist
G
Sylvia Serville
rowing up in New Zealand with
artistic parents, Sylvia Serville had
doodled and drawn small caricatures
most of her life, but when debilitating
epilepsy prevented her from being able
to drive or seek employment outside
the home, she decided to explore her
creativity to find ways to supplement the
family income.
This proved to be a turning point in
her life in ways she could not imagine.
It all began in 1991 where she began
creating large collage works of her oil
pastel drawings and found there was a
market for her work.
In 2000 she began to draw, for the first
time, using graphite on paper. Still living
in New Zealand, she began a 40-strong
body of work around the theme of the
‘Stolen Generation’ which she completed
upon moving to Australia. For up until
this time, family oral tradition had
informed Sylvia that she had Aboriginal
blood through her great grandmother
‘Wee Mum’, believed to have come to
New Zealand from Tasmania. Sylvia
surmised that “Wee Mum” may have
been part of the stolen generation.
This series of drawings was exhibited
in Perth in 2002 at Indigenart – The
Mossensson Galleries.
Sylvia delved deeply into the plight
of the Aboriginal people and became
passionate in expressing a respectful
and sensitive dialogue of the Aboriginal
experience in her art, winning awards
on the way. Soon her art was attracting a
price-tag of up to $7000.
At the time Sylvia said, “I had no idea
of my heritage while growing up in New
Zealand, but I was always a restless soul
and had a strong feeling for the land”.
You can imagine her shock when she
discovered that “Wee Mum” was not
aboriginal at all but a descendent of
the Native American Indians from the
Wampanong people near New York. In
the late 1600s about 500 members of
the Wampanong Tribe were shipped
to the island of Bermuda where they
became slaves working in the salt fields.
Bermuda was a hub for the slave trade
of people dispossessed of their land
and heritage from Africa. Sylvia now
believes that “Wee Mum” may have
been part-African, descendent from the
African slaves who were also held there.
She disclosed this to the galleries that
showed and sold her art. Following her
disclosure, she was virtually banned
from showing her art in shows about the
Aboriginal culture. At the time she was
also undertaking a BA in Indigenous
Australian Studies and after finding that
she was not Aboriginal and discovering
the political incorrectness of being a
European painting Aboriginal stories,
she withdrew and switched her degree
to Visual Arts.
Having grown up with epilepsy and
experiencing the embarrassment of
having seizures at school and, later,
in more public places, Sylvia knew
what it felt like to feel ashamed and
marginalized. Being called an ‘imposter’
once again marginalized her, and she
fled to her daughter in Dannevirke, in
New Zealand, to ponder her future.
Plummeting into a ‘deep hole’, she could
not paint for almost a year.
However, Sylvia has managed to
overcome this set back, and on returning
to Brisbane, she is thankful that she has,
once again, found herself creatively, and
because of her love for indigenous races,
has started a new series depicting the
Polynesians in the Brisbane area. Her
affinity with these peoples is enhanced
through her husband’s and children’s
Maori heritage.
Sylvia’s involvement in the Sparks
of Creativity research project, came
about through a chance encounter
between Jim Chambliss and her brother,
while kayaking in New Zealand. Jim
talked about his research of artists with
epilepsy, and her brother told him about
Sylvia.
For Sylvia, epilepsy is something
that she has felt acutely ashamed of and
her memories of public humiliation are
not pleasant. She did not want to be
reminded that she was an ‘epileptic’ and
chose not to disclose it, and consciously
kept it out of her art.
When Jim approached her, she said
she was forced into thinking about
her epilepsy and answer some pretty
searching questions to assist him. It was
then that she decided to ‘come out of the
featured artist
Artist Sylvia Serville with her award winning work
Totems & Icons
closet’ and started to talk about it.
Sylvia acknowledges that this will
come as a shock to some people who
think that they know her, but for her
it has been quite therapeutic to finally
bring it out into the open. “I am now no
longer ashamed and hope that by talking
about my epilepsy publicly I can help
inspire or educate other people with the
condition”, she said.
Sylvia submitted a favoured work
Totems and Icons for the Creative Sparks
exhibition and was judged the winner
of the Purchase Award sponsored by
Epilepsy Australia. This work is now
owned by Epilepsy Australia and will be
included in the exhibition when it goes
on tour in 2010.
When you view the art of Sylvia
Serville you can’t help being drawn
to her subjects and the layers of
meaning that her work reveals. It has a
connectedness that speaks to you of a
shared experience of loss, dispossession,
injustice, resilience and hope.
Now we know why.
Sylvia’s body of work, awards and achievements,
and exhibition history are available on her website.
www.sylvia-serville.com
17
In this issue Robert Mittan continues his discussion on
how to Beat Bad Seizures.
Beating bad seizures
part 2: treatment
M
Robert J Mittan
Seizures and
Epilepsy Program (S.E.E.)
www.theseeprogram.com
For 22 years, Robert J Mittan, PhD, has
been helping people with epilepsy and
their families. A clinical psychologist, he
is recognized as one of the foremost
epilepsy educators in the world. His work
helping others has earned many awards
and his research on epilepsy has resulted
in new and important discoveries.
The S.E.E. program is designed to give
people with epilepsy, parents of children
with epilepsy and family members the
information and skills needed to get the
best chance of becoming seizure free –
without letting treatment become part of
the problem.
Dr Mittan has presented this program to
over 30,000 people with epilepsy and
their families in Australia, Canada, New
Zealand and the USA.
This article was published in Exceptional
Parent magazine, Volume 35, Issue 7,
pages 46-54,July 2005 www.eparent.com
and is reprinted with permission.
Part 3, looking at how to get the best
seizure control possible for your child
will be published in the next issue of The
Epilepsy Report or you can visit the S.E.E.
library at www.theseeprogram.com
18
ost epilepsy diagnoses in children
are based upon the parents’
observation of what happens during
seizures. Unfortunately few parents are
taught exactly what to observe or what
the various types of seizures look like.
If the parents cannot provide a full and
accurate description, the doctor is less
able to make an accurate diagnosis.
Since effective treatment often depends
upon an accurate diagnosis, the result
can be poorly controlled seizures despite
competent attempts at treatment. For
some of you, the brief description of
seizure types and seizure observation
described in Part 1 (The Epilepsy
Report, Oct 2008) will be enough to
make a dramatic difference in your
child’s care. For others, the suggestion
of videotaping your child’s seizures may
make the difference you are seeking.
However, a correct diagnosis is just
the foundation of successful treatment.
We have to build upon that foundation
with appropriate therapy that is carried
out accurately. Many believe that the
doctor carries out the treatment, but
that is not true. The doctor prescribes
treatment. Parents have to carry it out
day by day.
The success in treatment is absolutely
dependent upon how accurately you,
the parent, apply the treatment each and
every day. Unfortunately training in
treatment techniques for parents is as
rare as training in diagnostic techniques.
That puts you and your child at a
disadvantage. Remember, knowledge is
power – and seizure control.
In this article, I will share with you the
treatment options available for difficult
to control seizures and, possibly more
important, some of the things you should
know to carry out the daily treatment of
your child successfully.
The treatment of epilepsy
Once a diagnosis is made, treatment
must be planned. There are a few types
of epilepsy known as benign epilepsy.
These are specific kinds of epilepsy
known to involve only few seizures or
are known to eventually go away on
their own. About 10 percent of epilepsy
is benign. Most children will have a kind
of epilepsy that requires treatment.
It may not sound like great comfort,
but if your child is going to have
epilepsy, now is the time for it. Never
have there been so many treatment
options. And never have advances in
epilepsy care come so rapidly.
You and your doctor have access to
an unprecedented range of methods to
achieve seizure control.
Since the dawn of time, there have
been four revolutions in epilepsy
treatment. There is a fifth revolution on
the horizon. Each revolution represents
a new and different way of controlling
seizures. Each has an important place in
the modern treatment of epilepsy.
Lifestyle
The first revolution in epilepsy
treatment was lifestyle management.
Back in the days before medications for
seizures were discovered, the only real
way people had to treat epilepsy was to
live a lifestyle that reduced the chance
of seizures. Certain behaviors were
discovered to make seizures more likely.
Certain lifestyle adjustments made
seizures less likely to occur.
Every human being has what is
known as a seizure threshold. The
seizure threshold is the amount of
biological stress our brains can take
before it has a seizure. All people and
animals are capable of having a seizure
if their seizure threshold is exceeded.
The threshold is interesting because its
level changes with changes inside our
bodies and sometimes with changes in
our surrounding environment. While
changes in the seizure threshold are not
particularly important to people who
do not have epilepsy, for people with
epilepsy these changes can mean the
difference between having seizures and
being seizure free.
Several things are known to lower
the seizure threshold. Possibly the
most important seizure trigger is sleep
deprivation. Many of you are already
familiar with this. Your child needs to
get the amount of sleep he or she needs
to be fully rested. That could be as
little as six hours and as many as ten
hours, depending on the child. Fatigue
and physical exhaustion can lower the
seizure threshold. This does not mean
your child cannot go out for sports – it
only means he or she needs to train
and condition properly. Proper physical
exercise raises the seizure threshold,
making seizures less likely. Mental
activity also raises the seizure threshold.
Thus, letting your child become a couch
potato may put your child at risk of
seizures for a couple of reasons. My
particular beliefs about seizure triggers
can be found in Figure 1. Since there is
not enough research about situations that
lower seizure threshold, your doctor’s
opinion may differ from what you see
here. At the least, these are things to
watch for. A good seizure diary will tell
you which of these things might affect
your child.
Stress is universally believed to
cause seizures – with little scientific
evidence. There is some research that
suggests stress may have a protective
effect against developing epilepsy in
animals. On the other hand, there is
some research suggesting that relaxation
techniques, yoga, and biofeedback for
stress may reduce seizure frequency.
Stress is a part of everyday life and
you should not attempt to shield your
child from it. If you do, your child will
not develop adequate skills to handle
stress, a problem that will plague him
or her throughout life. Instead, children
need challenges that include stress.
But make sure that under stressful
situations your child gets enough sleep.
I suspect the real culprit in stress is
the sleep deprivation. Help your child
relax and get a good night’s sleep
rather than tossing and turning and
going over stressful events in his or her
mind for much of the night. Relaxation
techniques might help with this.
There are some physical conditions
that lower the seizure threshold. These
include sleep and fevers. For some
children sleep is the only time in the
day their threshold is low enough to
permit seizures. Many of you have
noticed seizures are more likely
when your child is ill. Paracetamol is
usually OK for fevers, but check with
your physician first. There is also some
evidence that allergies may lower seizure
threshold. However, care should be taken
as antihistamines are known to lower
seizure threshold and should probably be
avoided in sensitive children. Sometimes
flickering lights, certain sounds, or
hyperventilation (breathing hard to
the point of dizziness) can bring on
seizures, but this is not common. Many
more people are unnecessarily afraid of
these things than are affected by them.
Do not let baseless fears keep your
child from going to the movies, playing
video games, or competing in sports.
Keeping a good seizure diary can help
you sort out whether or not something
in the child’s activities or surroundings
actually does make his or her seizures
worse.
Girls may have a particular problem
with their seizure threshold. When
they are old enough to have a monthly
period, the changes in hormone levels
can affect their seizure threshold.
There are two points in the monthly
cycle where estrogen (which lowers
the threshold) is high and progesterone
(which raises the threshold) is low.
During these times seizures are much
more likely. If your daughter has
seizures tied to her monthly cycle,
there are some add-on treatments that
might be of help. Brief use of Diamox®,
Figure 1: Lifestyle Activities
that may affect seizure control
Lowers
threshold
Raises
threshold
certain benzodiazepines (Valium® like
medications), and natural progesterone
during the monthly cycle have benefited
some women.
Diet may affect seizures.
Hypoglycemia, or low blood sugar, may
lower the seizure threshold. Children
should eat a diet that maintains a
relatively constant blood sugar level.
Sugary snacks can cause blood sugar
levels to go up and then come down
dramatically. Dieting can also lower
sugar levels and may be a problem in
teenaged children. Small meals through
the day are better than two or three big
meals. Your doctor can refer you to a
dietician or nutritionist who can help you
establish a healthy eating pattern with
your child. There is some concern that
caffeine may make seizures stronger or
last longer.
There is a treatment for seizures that
was discovered in ancient times from
lifestyle changes. In early Greece it
was well known that starving a person
with epilepsy often caused them to have
dramatically fewer seizures. In the 1920s
doctors from the Mayo clinic discovered
why this happened, leading to the birth
of the “ketogenic diet.” When a person
is starving, their body uses up all of its
stored carbohydrates for energy and
starts using stored fat for energy instead.
When the body burns fat for energy, a
19
byproduct known as ketones accumulate
in the bloodstream. It turns out ketones
are antiepileptic. In the ketogenic
diet, the body is fooled into thinking
it is starving. The child gets almost
no carbohydrate in his or her diet and
instead gets lots and lots of fat. The body
is forced to use fat for energy, and in
the process produces ketones. Seizures
stop in 20 to 30 percent of children and
seizures are reduced by at least half in
another 40 to 50 percent. About 20 to 40
percent get no benefit. The diet requires
an experienced dietician and absolute
cooperation from the child and parents.
The diet is difficult to manage and is
not the most appetizing. When it works,
children and parents are often willing
to put up with it. In an interesting
development, there is some recent
evidence the Atkins diet, which also
restricts carbohydrate to some extent,
might help raise the seizure threshold.
More study is needed about this, though.
Medication
The second revolution in epilepsy
treatment was medications. It started
with the use of bromides in the latter
1800s. Effective antiepileptic drug
(AED) treatment began in 1912 with
phenobarbital and 1937 with Dilantin®.
In the last ten years the number of major
AEDs has doubled from eight to 16, with
more on the way. This means you and
your doctor have many more choices
for getting good seizure control without
unreasonable side effects.
Using medication to treat epilepsy is
not as simple as just taking a pill. Three
things must be achieved.
First, the right medication must be
chosen for the kind of seizures your
child has. Different medications work
best for different seizures. The wrong
antiepileptic medication may have no
effect and can even make certain kinds
of seizures worse! This is why having
an accurate diagnosis is so important to
successful treatment.
Second, medication needs to be chosen
to have the least amount of side effects
for the child. Here is where the new
medications may have an advantage.
So far research has not shown the new
AEDs are necessarily more effective at
stopping seizures than the old drugs,
but there is evidence that some have less
side effects for some patients. Another
important treatment principle is to use
20
only one medication whenever possible.
Using two or more medications can
significantly increase the risk of side
effects. It has been estimated that 80 to
90 percent of patients will get the best
seizure control on one medication alone.
Two medications might be required
for particularly difficult cases, and
very rarely three. Four antiepileptic
medications are not considered
good practice according to practice
guidelines. Recent research found that
while 60% of patients become seizure
free on one medication, only 5% became
seizure free on two medications, and
the chance of becoming seizure free on
three or four medications was about one
in a thousand each.
Meanwhile, side effects from two or
especially three or more medications can
cause problems with attention, learning,
behavior and overall quality of life.
Third, it is not how much you take
by mouth that counts; it is what is in
your bloodstream that matters. Seizure
control (and side effect control) comes
with maintaining exactly the right
amount of medication in your child’s
bloodstream at all times.
This right amount of medication
in the bloodstream is known as the
therapeutic range. I am sure many of
you have heard of it. However, there is a
lot of misunderstanding about what the
therapeutic range is.
The lower limit of the therapeutic
range is defined by the minimum amount
you need to have in your bloodstream to
cause a reduction in seizures. The upper
limit is the maximum amount you can
have in your bloodstream before you
start having unacceptable side effects
from the medication. Notice a key word
in this definition: you! As it turns out,
each and every child has his or her own
individual therapeutic range. Doctors
use a published therapeutic range as
a starting point to come up with an
appropriate amount of medication for the
child. But the published range is based
upon the study of a particular group of
people with epilepsy, not your child. The
therapeutic range for this group can be,
and often is, different from your child’s
therapeutic range. Figure 2 explains
how antiepileptic medications behave
in the bloodstream. Understanding this
is critical to knowing how much of a
challenge it is to be sure your child
maintains the right concentration in his
or her bloodstream at all times.
One of the important parts of
epilepsy treatment is learning a person’s
individual therapeutic range. This is
done through the use of blood tests
under specific conditions. This learning
can take some time. As the child goes on
a medication, the doctor will take blood
levels to try to figure out how much
your child needs by mouth to get the
right level of medication in your child’s
bloodstream. To begin with, the doctor
will use the published therapeutic range
as a guide. At this point it becomes very
important to watch how the child reacts
to the medication. As the amount of
medication is slowly increased and the
child starts showing an improvement in
seizure control, it is important to get a
blood level at the time seizures improve.
This will give you and the doctor some
idea of what the minimum amount of
medication in your child’s bloodstream
is required for seizure control.
If your child is still having some
seizures, the medication should be
increased further – again carefully
watching the response. If the child starts
having toxic side effects (have too much
medication in his or her bloodstream),
another blood level should be taken.
This level tells you and the doctor what
the maximum amount of a particular
medication is for your child. If your
child responds well to a medication
adjustment with no seizures and no side
effects, then another blood level should
be taken. This time the level tells you
what the ideal amount in your child’s
bloodstream might be. By taking blood
levels, you and the doctor can eventually
learn the therapeutic range for your
child. Be sure to write down blood
level readings along with their date,
medication dosage, and circumstance
(seizures started to reduce, toxic side
effects occurring, good control – no side
effects) so you can learn along with the
doctor what range works for your child.
Blood level testing is available for all of
the old and new AEDs.
If finding the individual therapeutic
range for your child were the only
problem, the treatment of epilepsy with
medication would be easy. Unfortunately
other things in your child’s life can affect
his or her blood level. One of the biggest
problems is forgetting (accidentally or on
purpose) to take a dose of medication.
Research has shown the leading cause
Figure 2: How Medications Behave in Your Child’s Bloodstream
Therapeutic range
Sub Therapeutic range
Toxic range
1.
Right after a dose, the amount in your child’s bloodstream increases as the body
absorbs the medication. Eventually the amount increases until it reaches a ‘peak’
(high point) one to four hours after a dose.
2.
In between doses, the body slowly removes the medication, so the amount in the
bloodstream drops until it reaches a ‘trough’ (low point) right before your child takes
the next dose. If your child does not take a dose when it is due, the amount in the
bloodstream continues to drop. To use medications successfully, both the ‘peaks’ and
the ‘troughs’ have to stay inside the therapeutic range. You can see this is not easy
to do. You have to pay close attention to taking the right amount of medication and to
taking doses on time.
3.
At this point a does of medication was forgotten, or the prescribed dose was not large
enough. As a result, the level of medication in the bloodstream dropped far enough
that your child is at risk of having seizures.
4.
This is what happens when too much medication is taken – either the prescribed
dose was too high or by taking extra doses. The amount in the bloodstream rises to
the point where the ‘peak; is inthe toxic range. At the least, this may mean toxic side
effects. At the most it could mean seizures. Several antiepileptic drugs lose their
protective ability when your child becomes toxic on them.
of unnecessary seizures in epilepsy is
failure to maintain proper blood levels of
antiepileptic medication. Remember, the
battle is won or lost in the bloodstream.
If you forget a dose, the amount
in the bloodstream goes down and
breakthrough seizures can occur.
If you suddenly stop medications, a
more serious problem can occur called
status epilepticus. Status epilepticus is
the condition of being in a continuous,
nonstop seizure or in a series of seizures
where the person does not regain full
consciousness between seizures. Where
regular seizures do not appear to cause
lasting harm to your child, status
epilepticus can cause harm to the brain
and even death. The most common
way people being treated for epilepsy
go into status is by suddenly stopping
their medication. The risk of going
into status by stopping medication has
been estimated to be only 10 percent,
but are you willing to gamble on it?
Think of epilepsy as a bottle of soda
that is shaken up. The cap on the bottle
is your antiepileptic medication. If you
suddenly pop the cap off the bottle, what
will happen? Except in the extreme
case of an allergic reaction, AED doses
are slowly reduced (tapered) to protect
against causing status epilepticus.
Fortunately, outside of suddenly
stopping your medications, status
epilepticus tends to be rare. You can
help protect your child by maintaining
those blood levels at all times. A few
children with epilepsy have a tendency
to go into status epilepticus. They need
the most aggressive treatment and may
benefit from an additional medication
called Diastat®, which is used to stop
prolonged seizures or groups of seizures.
Forgetting is not the only challenge.
Other medications can affect blood
levels of your child’s antiepileptic
medication as well. Some medications
can decrease blood levels, especially
other antiepileptic drugs. This is another
reason why one drug is preferred to
two whenever possible. However, other
prescription drugs, certain over the
counter medications, and even herbals
can reduce blood levels (and seizure
thresholds.) It is important for you to
ask questions of your doctor and your
pharmacist about potential interactions
when your child is about to be given
another medication or supplement. The
opposite can happen as well.
Another medication can increase the
blood level of an antiepileptic drug. If
this happens, your child can become
toxic on the medication. Again, ask first.
Report side effects to your doctor,
otherwise he or she will not know
there is a problem. What are the signs
that your child may have too much
medication in his or her bloodstream
(known as signs of “toxicity”)? Ask
your doctor and pharmacist. They can
explain the specific signs to watch for.
In general, excessive sleepiness, loss of
muscle coordination, irritable behavior,
blurred vision, nausea, and memory
problems are possible signs of toxicity.
Keep in mind that there may be another
explanation for these symptoms, such as
not enough sleep or behavioral problems
not related to the medication. When
problems such as these occur, your task
is to report them to the doctor and then
work with him or her to figure out what
is actually causing the difficulty.
Even simple things can affect
blood levels. For example, calcium
can interfere with the body’s ability
to absorb Dilantin®, Phenobarbital,
and Gabatril®. In this case sources of
calcium should be avoided two hours
before and two hours after a medication
dose. Grapefruit juice can cause
blood levels of some medications like
Tegretol®, Teril®, and Trileptal® to go
up, possibly causing toxic side effects.
Several medications can lose some
of their antiepileptic effects when your
child becomes toxic on the medication.
Do not give extra seizure medication to
your child. Not only do you risk toxicity,
but an increase in seizures as well. The
bottom line is the therapeutic range is
the therapeutic range – you should not
go below it or above it.
I hope you are getting the message
that the task of maintaining proper
blood levels is difficult. It requires close
attention and a lot of questions of your
doctor and pharmacist. If you have more
than one doctor treating your child,
you will have to call attention to the
possibility of drug interactions whenever
new medications are prescribed,
even antibiotics. If your antiepileptic
medication was chosen properly, and if
you succeed in maintaining constant
21
blood levels, you should be rewarded
with improved seizure control and few
side effects. If you are doing all you
should and there are still seizures or side
effects, then a change of medication or
treatment strategy may be in order.
Antiepileptic drugs have dramatically
changed the face of epilepsy for most
people. It is usually the first line of
defense against seizures and allows most
people to eventually gain full control
over seizures.
However, medications must be
managed much more carefully than
most parents realize. Some children
require trials with several different
medications before the best one is found.
This takes time and can be frustrating,
but stick with it. You and your child
could be rewarded with good results. Do
not forget to pay attention to lifestyle
as well. Lifestyle changes have the
advantage of having no bad side effects.
For some people proper medication with
lifestyle changes can mean freedom
from seizures.
Surgery
The third revolution in epilepsy
treatment is surgery. In over half of the
people who have epilepsy, seizures start
from a specific spot in the brain. This
is called a seizure focus. That focus
can be surgically removed, or with a
new procedure, surgically isolated from
the rest of the brain. One of the most
common causes of uncontrolled seizures
is a condition known as mesial temporal
sclerosis. It is an abnormality that
usually occurs in one temporal lobe. It
often can be found with a high resolution
MRI scan. If your child has it, research
suggests there is only about a 10 percent
chance that medications will control
his or her seizures. On the other hand,
surgery for seizures caused by mesial
temporal sclerosis is reported to have
success rates of up to 80 to 90 percent.
Surgery can result in a cure for
epilepsy. If the source of seizures is
removed, there is no epilepsy (though it
is good practice to keep the patient on
antiepileptic medications for a year or
two after the surgery to make sure it was
a success.) It turns out epilepsy surgery
is one of the most successful surgical
treatments for any kind of medical
disorder. Overall success rates can range
from 65 to 85 percent or better.
The success of surgery depends upon
22
the success with which the seizure focus
is identified: its exact location, exact
size, and degree of certainty it is the
only source of seizures. While surgical
skill is important, it is the skill of the
diagnostic team in finding the seizure
focus that is critical. As a result, if you
are thinking about surgery, go to an
epilepsy surgery specialty center that
has lots of experience in finding seizure
focuses. That is the expertise you want.
With a clearly defined focus, the chance
of surgical success skyrockets.
Parents have a number of
understandable concerns about
epilepsy surgery – after all it is brain
surgery. It sounds dangerous, but the
complication rate is relatively small.
Infection and bleeding is probably the
most common of these unusual events.
Stroke can occur, and rarely death. The
neurosurgeon should explain these and
any other risks that could be present for
your child prior to deciding on surgery.
In comparison to the hazards posed to
the child by uncontrolled seizures and /
or the prospect of multiple medications,
the risks of surgery could be quite
small. Parents are also afraid if you
cut out part of the brain, the child will
lose some mental abilities. By far the
most common epilepsy surgery is a
temporal lobectomy. This is where the
surgeon takes out the front portion of
the temporal lobe. There are decades of
research looking into the consequences
of this procedure, and it has little impact
upon mental abilities. There could be
some reduction in short-term memory
and learning, but these abilities are
often more impaired by seizures. If the
surgery is on the temporal lobe on the
left side, the person might have mild
difficulty with coming up with the right
word they want to use in the middle of
a conversation. It is the “its on the tip
of my tongue” experience we have all
had. This usually improves with time.
Temporal lobectomies can sometimes
slightly reduce a person’s field of vision,
though not enough to interfere with
daily life. The epilepsy specialist and
neuropsychologist should be able to give
you a good idea of whether any of these
changes might occur. Epilepsy surgery
does not change personality and it does
not fix behavioral problems. It only deals
with the seizures.
Sometimes the seizure focus is located
in a part of the brain that cannot be
removed because it would cause an
important impairment. Fortunately,
this situation is more the exception
than the rule. However, there is a
surgical procedure called “multiple
subpial transection” that isolates the
seizure focus from the rest of the
brain without removing brain tissue. A
review of worldwide experience with
this procedure found excellent rates of
seizure reduction, with 62 to 87 percent
of patients having a 95 percent or better
reduction in seizures, depending upon
seizure type. This opens new prospects
for patients who were not surgery
candidates before due to the location of
their seizure focus in the brain.
There are many parents who are
reluctant to make a decision on surgery
for the child. They want to wait until
the child is old enough to help decide
whether or not to have surgery. That may
be a big mistake.
Waiting years before surgery means
that the child is subjected to years of
seizures, years of medications, and
years of the disabling impact of epilepsy
on development. By the time the child
is old enough to help decide, epilepsy
has already taken its toll on social,
emotional, and academic development. I
know it is hard, but my advice to parents
is to make the decision as early as
possible if medications are not working
and surgical treatment is an option. Not
only may you stop seizures, but you may
also save your child’s development and
give your child a better quality of life
throughout his or her entire life.
Brain stimulation
The fourth revolution in epilepsy
treatment is brain stimulation. This
is the newest treatment revolution. It
started in 1997 with the FDA approval
of the Vagus Nerve Stimulator (VNS).
Brain stimulation involves the use of
small amounts of electricity to stimulate
the brain or nerves. The VNS does
not directly stimulate the brain, but
stimulates the vagus nerve in the neck,
which in turn is thought to stimulate
the brain indirectly. The VNS has an
electrical stimulator – a disc 50mm
across and 7mm in thickness – that
is implanted in the body right below
the collarbone. A wire goes from the
stimulator to the vagus nerve. The
stimulator gives a small amount of
electrical stimulation to the nerve for a
set amount of time, and then it shuts off
for a set amount of time. The doctor can
change the length of this on and off cycle
and the amount of stimulation given to
fit the needs of each patient.
The Vagus Nerve Stimulator is not a
silver bullet. According to a summary
of the first five years of experience with
the VNS after FDA approval, about
56 percent of patients who have the
stimulator for a year have a 50 percent
reduction in seizures. About 20 percent
have a 90 percent reduction in seizures
or greater. Few patients become seizure
free, though it does happen. What makes
these results remarkable is patients
getting the VNS have usually failed to
respond to medications and are often
poor candidates for surgery – in other
words they are patients with some of
the most difficult to control epilepsy.
When you consider how difficult their
cases are, the improvements with VNS
become more impressive.
There are new brain stimulators in
development. These directly stimulate
the brain, either on the surface of the
brain (the cortex) or deep inside the
brain. One of the interesting parts of
this research is that some scientists are
trying to create what is known as an
“intelligent” brain stimulator. Unlike
the VNS which has a pre-set on and off
cycle, the “intelligent” stimulator detects
when the brain is about to have a seizure
and stimulates prior to or during the
seizure to stop the seizure.
Detecting a seizure before it happens
has been a “holy grail” in epilepsy
research for decades. Only recently has
computing power, miniaturization, and
a sophisticated understanding of brain
activity begun to allow for the creation
of devices that can sometimes detect
pre-seizure brain activity. I think this is
an extremely exciting development. Even
if direct brain stimulation does not work
(though like everything else in epilepsy
treatment, I think it will work for some
people and not others), the possibility
of being able to predict seizures before
they occur is extremely important. How
happy would people be to have a small
implant near their ear that would beep
some minutes prior to a possible seizure?
Would having a warning in advance be
helpful to you? Such a device does not
yet exist, but I see it on the horizon. As
I said in the beginning of this series,
this is a very exciting time for epilepsy
treatment.
Gene therapy
The fifth revolution in epilepsy
treatment has not happened yet. The fifth
revolution is gene therapy for epilepsy.
The first tests of this approach are
just beginning in animals. Right now
researchers are investigating placing
a gene for an antiepileptic protein into
brain cells of mice using a virus. Other
researchers are beginning to understand
the genetic basis to some kinds of human
epilepsy. Certain genetic variations
in the way brain cells work may
appear related to the risk of epilepsy.
Researchers are trying to understand
how these variations work to make
epilepsy more likely. There appears
to be an incredible number of genetic
variations that can contribute to epilepsy.
To get an idea of how many variations
there can be – and to get an idea of how
incredibly far researchers have gone in
studying the genetics of epilepsy – take a
look at the diagram below.
The results of genetic research
could be monumental. Benefits could
include the ability to intentionally
design medications to compensate for
genetic problems in order to control
seizures, the use of genetic testing to
aid in the selection of the most effective
medication for a particular person, and
the possible development of genetic
treatments like the one being tested in
mice. All of this is in the future. It is
not here now. But advances have been so
incredibly fast paced that some of these
things might come to be in the not-toodistant future.
Now you know about the four basic
treatment options and about a fifth
approach that is on the horizon. You
know how to get the most from each
treatment option. You understand
both the challenges and the careful
attention required to treat seizures with
medications. From the first article in
this series you know what epilepsy is
and how it is diagnosed. You know how
you can make a difference through your
ability to observe and record your child’s
seizures carefully.
In the next and final article about
the medical aspects of epilepsy, we are
going to put this all this information
together and use it to give your child the
best chance for seizure control. The goal
is no seizures and no side effects.
Different genetic abnormalities in a brain cell which can
cause just one type of epilepsy
23
Romy’s story
living with Dravet Syndrome
by Patrice Scales
R
omy Parks-Earl was a baby – just
4 ½ months old – when she had
a severe seizure. She was admitted to
hospital for a week to undergo various
tests which found no explanation for the
seizure. Just four weeks later, Romy had
another seizure, which was followed by
constant seizures.
“We had no idea what the seizures
were. At the time, we were seeing a
neurologist and our own doctor. We then
consulted a paediatric neurologist who
specializes in epilepsy. At 11 months
old, Romy was diagnosed with Dravet
Syndrome.”
Dravet Syndrome is a severe form of
epilepsy which usually appears in the
first year of a baby’s life and generally
does not respond well to antiepileptic
medication. Dravet is also known as
Severe Myoclonic Epilepsy of Infancy
(SMEI). Most of the children will have
varying degrees of intellectual disability,
physical difficulties and require ongoing
care.
Romy’s seizures were severe and
24
unpredictable. “It was frightening. For
over six months, it was ambulance trip
after ambulance trip. Every night I
packed a bag and slept in my track suit
so that I was ready to just o…it was
terrible, terrible,” are Danni’s memories
of those few years.
“When Romy was diagnosed with
Dravet Syndrome, at least we could put
a name to her medical condition. But we
know through genetic testing that Romy
carries the SCN1A gene which means
that this condition will be with her for
life,” says Danni.
Anyone who knows anything about
epilepsy can tell you how distressing it
is for parents to see their young child
experience severe tonic clonic seizures.
“I can only explain the tonic clonic
seizures that Romy has as being ‘full-on’
convulsions,” says Danni. They last
on average 25 minutes, sometimes up
to 80 minutes. She goes white; her lips
turn blue; her little body stiffens; her
back arches so badly, you think it will
break. For anyone not used to it, it is a
frightening experience. I look back and
wonder how we survived.”
In the early years of Romy’s diagnosis,
the situation became overwhelming for
her parents. “For the first three or four
years, we really tried to manage things
by ourselves. We really just bunkered
down and didn’t go anywhere,” recalls
Scott.
“I got to the stage where the only
people we were seeing were medical
people. Someone would tell us one
thing; then another person would tell us
something else,” says Danni. “We had
information coming from everywhere.
In the end I literally threw my hands
in the air, locked myself in the house
– it all got too much. I was completely
overwhelmed. Life was pretty grim with
seizures all the time.”
“Now it doesn’t seem as bad to us
as it was back then. I suppose we have
got used to it, and accept that this is
our life. Some of the seizures are more
violent than others. But to give you an
indication, in one bad period Romy had
While Romy has some behavioural
issues which are common in children
with Dravet Syndrome, the hope is
to keep Romy at mainstream school.
Later this year, she will have a
neuropsychological assessment to assess
her learning development.
For Scott, the most difficult thing
is not being able to do the things they
would like to do in life. “If we want to
go out or away somewhere, we can’t.
But if that’s the way it is, that’s just life.”
Danni feels the control over life has been
taken away from her. “I like everything
to be in its place, to be well-organised,
but I can’t control life any more. There’s
nothing I can do to change the way it is.”
At a recent first-time Dravet
Conference in Melbourne, Dannielle
and Scott, came into contact with 25
other families with children with Dravet
Syndrome. “The best thing was to know
that we are not alone in this. All the
issues that came up – the behavioural
challenges, short attention span, and
medical concerns – well, we knew it all.
It was just good to be connected with
other families who go through the same
things we do.”
Scott found the conference more
daunting. “I found it hard to listen to
the problems we might have to face in
the future. I guess I don’t need to hear
about tomorrow; we just have to deal
with today. We know nothing is going to
change, we just have to get on with it.”
Dannielle and Scott say that it is
probably only in the past twelve months
that they have really come to terms
with Romy’s condition. “We accept that
nothing is going to change, and that this
is our life. All of us, including Jack, have
roles to play in dealing with Romy’s
seizures and development, and we just
get on and do it.”
“Maybe sometime in the future, we
may be able to help and support other
families who are going through what
we’ve been through,” says Danni. “I
think we have a lot to offer other people;
information that we have learnt that
could be shared. Just to be able to speak
to someone else who knows what you
are going through can help share the
burden.”
Photo: Romy, with her brother, Jack.
FAST FACTS
seven seizures in 10 hours – one after
the other. Then, of course, we might
have a week or two without seizures, but
the anxiety is always with you.”
It is the severity and unpredictability
of the seizures that limits what Danni,
Scott, Romy and her brother Jack, aged
10, can do as a family group. A short
family holiday to Tasmania turned into
a saga when Romy was admitted to
hospital for eight days. On a trip to visit
relatives in Queensland, Romy had a
seizure in a car park. Shopping trips are
limited because inevitably Romy has a
seizure in the shopping centre.
“Really, Romy can’t experience what a
child of her age normally does. She can’t
have sleep-overs, or go to friend’s places
to play. But at the same time, she’s also
quite happy playing by herself.”
Last year, despite some initial
reluctance, the Parks-Earl family spent
a weekend at the Epilepsy Foundation
of Victoria Family Camp. “I remember
Jean Ewing, our counsellor from the
Foundation, ringing me to invite us to
come to the camp,” says Danni. “I told
her it’s easier to stay at home. But then
she said ‘This is one time when you
don’t have to apologize for your child’s
behaviour’. That was good enough for
me.”
“It was just fantastic, especially the
siblings program. We didn’t see Jack all
weekend – he had a ball. It was such a
sense of relief for Scott and me to know
there were so many other people in the
community living our life.”
This year – 2009 – Romy has started
school at a local mainstream Catholic
school. For Danni and Scott, it is a great
milestone for their daughter to reach.
“I was a wreck at the thought of Romy
going to school, but we have had great
support from the principal and teachers,”
says Danni. “It was important for us to
have a nurturing environment, and that’s
what the school provides.”
“The Schools Co-ordinator from the
Epilepsy Foundation visited the school
before Romy began and ran a session for
teachers explaining Dravet Syndrome,”
says Danni. “She then followed that visit
up a few weeks later which made the
staff feel much more confident about
dealing with any situation with Romy.
That sort of support is irreplaceable.
It’s really positive to see what Romy is
doing at school, but the anxiety is always
there.”
Dravet’s
Syndrome
French psychiatrist and
epileptologist, Charlotte Dravet
(1936–) first described severe
myoclonic epilepsy in infancy
(SMEI) in 1978.
Beginning before the age of
one with febrile convulsions
that are often prolonged,
affected children go on to
develop a wide variety of
seizures. While development
is normal prior to the onset
of seizures, at about the age
of one development usually
slows considerably. Most
or all children will develop
psychomotor retardation and
other neurologic deficits.
Seizures are difficult to
treat and usually involves
polytherapy.
SMEI is not associated with
previous significant brain
pathology. The most probable
etiological background is of
genetic nature.
SMEI is a rare disease, with an
incidence probably less than
1 per 40,000. In 2002 Dravet
and colleagues found at least
445 published cases. Males
are more often affected than
females in the ratio of 2 to 1.
In 2001 the ILAE recognized
the eponymous name Dravet’s
Syndrome instead of SMEI in
recognition that not all cases
experience myoclonic seizures.
For a description of Dravet’s
Syndrome by Charlotte Dravet
visit
www.ilae-epilepsy.org/ctf/
dravet.html
A video by Professsor
Ingrid Scheffer, Professor of
Paediatrics Neurology Resarch,
University of Melbourne, on her
insights into Dravet Syndrome
can be viewed at
www.virtualmedicalcentre.
com/videopage.
25
Who is the diet for?
The ketogenic diet is usually
recommended for children whose
seizures have not responded to several
different seizure medicines. It is
particularly recommended for children
with Lennox-Gastaut syndrome while
the diet has been shown in case reports
and case series to be particularly
effective for other epilepsy conditions
including infantile spasms, Rett
syndrome, tuberous sclerosis complex,
Dravet syndrome, Doose syndrome, and
GLUT-1 deficiency.
Doctors seldom recommend the
ketogenic diet for adults. However, in the
limited studies that have been done, the
diet seems to work just as well, although
it is very restrictive for most adults.
Studies are underway to evaluate the
modified Atkins diet in this population.
Does it work?
Ketogenic diet
explained!
T
he ketogenic diet is a special highfat, low-carbohydrate diet that helps
to control seizures in some children with
epilepsy. It is prescribed by a physician
and carefully monitored by a dietitian.
The name ketogenic means that it
produces ketones in the body (keto =
ketone, genic = producing). Ketones
are formed when the body uses fat for
its source of energy. Usually the body
uses carbohydrates (such as sugar,
bread, pasta) for its fuel, but because
the ketogenic diet is very low in
carbohydrates, fats become the primary
fuel instead. Ketones are not dangerous.
They can be detected in the urine, blood,
and breath. Ketones are one of the more
likely mechanisms of action of the diet;
with higher ketone levels often leading
to improved seizure control.
26
The ketogenic diet is a strict,
medically supervised diet. This
high ketone state (ketosis) decreases
seizure activity in some circumstances
by mechanisms which are not fully
understood. The diet deliberately
maintains this build up of ketones by a
strictly calculated, individual regimen
with rigid meal plans.
The ketogenic diet is not a "natural
therapy". Less is known about the
beneficial and adverse effects of the
ketogenic diet than other treatments for
epilepsy eg. antiepileptic medications
and surgery. The ketogenic diet has not
been subjected to the usual clinical trials
that establish efficacy and safety of a
treatment for a medical condition.
The ketogenic diet does not control
seizures in all children. In fact, only a
relatively small proportion of children
benefit significantly from the ketogenic
diet. At the Royal Children’s Hospital,
Melbourne, a recent review of the
ketogenic diet in 30 children revealed:
• 36% of children had a significant
improvement with more than 50%
reduction in seizures (16% became
seizure free);
• 28% of children had a small
improvement with less than 50%
reduction in seizures;
• 36% of children had no response.
This roughly equates to 1 in 3 children
having a significant reduction in
seizures, 1 in 3 having only a slight
improvement in seizures, and 1 in 3
having no improvement in seizures.
Some centres around the world report
up to 50% of their patients having a
significant improvement with the diet,
however, it should be noted that patient
selection and reporting differ between
centres.
Children who are on the ketogenic
diet continue to take seizure medicines.
Some are able to take smaller doses
or fewer medicines than before they
started the diet, however. The time when
medications can be lowered depends on
the child and the comfort level of the
neurologist.
What does it look like?
Food is usually divided into three
or four meals per day and allows for
the child to receive enough energy
requirements for normal growth. Meals
tend to be small and very oily and water
is the main fluid allowed, the volume
being restricted to 120-150mls over each
1 hour period.
The diet mainly consists of butter/
margarine, double cream, mayonnaise,
eggs, bacon, tuna in oil, cheese, oil
– vegetable or olive oil, lean mince,
chicken, vegetables, salad, nuts and fruit.
Below is a typical breakfast menu:
45 grams whole raw egg
15 grams butter
3 grams nuts
30 grams raw granny smith apple
13 grams fresh olive oil
10 grams regular butter
5 grams thickened cream Because the diet does not provide
all the vitamins and minerals found in
a balanced diet, supplements will be
recommended. The most important of
these are calcium and vitamin D (to
prevent thinning of the bones), iron, and
folic acid.
Working with a dietitian
When children (or adults) are treated
with the ketogenic diet, the dietitian is a
very important member of the medical
treatment team. The dietitian works out
how much of one type of food or another
should be served together to make the
diet work. He or she helps the family
plan the child’s meals, and works out
how many calories the child needs for
healthy growth.
Meal plans serve small amounts of
fruits or vegetables (carbohydrates) and
meat, fish or chicken (protein) with lots
and lots of fat (such as cream, butter,
eggs, or mayonnaise), and no sugar.
Families initially find planning and
preparing the diet very time consuming,
but with practice this becomes easier
and faster. Shopping practices change,
but costs are comparable to normal
household budgets.
What problems can arise?
Each portion of food must be prepared
very carefully by the parents, who often
use a gram scale to weigh items exactly.
That’s because a tiny mistake in
weighing and measuring foods can break
the diet’s effects.
Even if the child eats a few biscuit
crumbs, or puts anything containing
sugar – including medicines and
toothpaste – in the mouth, it can be
detrimental to the diet’s efficacy.
Other factors that cause the loss of
ketosis include incorrect nutritional
content documented on food
product labels, inappropriate food
related behaviours such as refusal
of certain foods, and compliance of
children (especially in some social
circumstances), or if the child is unwell.
Adverse effects
The ketogenic diet is not a benign
holistic or natural treatment for epilepsy;
as with any serious medical therapy,
there may be complications. These are
generally less severe and less frequent
than with anticonvulsant medication or
surgery.
The most common adverse effect is
constipation. There are dietary options
to prevent this problem including eating
high fibre vegetables that are allowed
on the diet and drinking enough water.
Less common adverse effects that might
occur with long-term use of the diet
includes kidney stones, high cholesterol
levels in the blood, slowed growth or
weight loss or gain, and bone fractures.
Discontinuing the ketogenic
diet
The ketogenic diet should not be
stopped abruptly. It is usually tapered
slowly over a three- to six-month period,
during which the levels of protein and
carbohydrate are gradually increased
and the level of fat is reduced. Your
child’s dietitian and doctor will work
with you to discontinue the diet.
Need for medical
monitoring
Important: Don’t Try it Alone
The ketogenic diet has special appeal
to families because changing what a
child eats seems like a more “natural”
way of preventing seizures than taking
pills.
Useful websites
For more information about
the ketogenic diet, support,
diet calculating software,
recipes, FAQs, forums, and
personal stories, visit:
Kuekids
http://home.iprimus.com.au/
kuekids/keto/page2.html
Matthew’s Friends
www.matthewsfriends.org
The Charlie Foundation
www.charliefoundation.org
The Royal Childrens
Hospital, Melbourne
www.rch.org.au
KMO-Home software
www.ketosoft.com
NutriGenie software
http://nutrigenie.biz/
ngkdmp48.html
Electronic
Ketogenic Manager
www.edm2000.com
Or call the
Epilepsy Australia helpline
1300 852 853
The diet is anything but natural. It is a
highly unnatural choice of foods and it
reverses the body’s natural way of using
food to gain energy. In fact, the ketogenic
diet, like taking medications or having
surgery, is a serious medical treatment.
It is not a ‘do it yourself’ diet
Trying to put a child on the diet without
medical guidance puts a child at risk of
serious consequences. Every step of the
ketogenic diet process must be managed
by an experienced treatment team,
usually based at a specialized medical
centre. A qualified healthcare professional should
be consulted before using any therapy or
therapeutic product discussed.
Sources:
The Royal Children’s Hospital, Melbourne
epilepsy.com
Matthew’s Friends
Epilepsy Foundation of America
27
Melbourne to host
Epilepsy Congress
T
he 8th Asian Oceanian Epilepsy
Congress will be held in Melbourne
from the 21-24 October 2010.
Organized jointly by the International
League Against Epilepsy (ILAE) and
the International Bureau for Epilepsy
(IBE), and hosted by the Epilepsy
Society of Australia and the Joint
Epilepsy Council of Australia, this
Congress will be held at the new stateof-the-art Melbourne Convention and
Exhibition Centre.
The Congress will bring together
recent scientific, clinical and social
developments in the field of epilepsy
from across the Asian Oceanian region
encompassing China, Japan, Korea,
Malaysia, Mongolia, New Zealand,
Philippines, Singapore, Taiwan,
Bangladesh, Hong Kong, India,
Indonesia, Nepal, Sri Lanka, Thailand,
and Australia.
The Scientific Programme
Topics for the main sessions will be
Depression and Epilepsy, Prevention of
Epilepsy in Asia and Oceania, Predictors
of Outcome of Epilepsy, and Epilepsy
and Driving.
Post main sessions will be mixed
with enlightening parallel sessions
and workshops on topical issues.
Additionally, videos, debates and ‘how
to’ sessions will run concurrently in the
afternoons. World-renowned experts in
their respective fields will share up-todate knowledge during the plenary
sessions.
This programme provides a great
opportunity for medical and allied
health professionals to learn of the latest
research in the understanding, diagnosis
and management of epilepsy.
IBE People’s Programme
For people with epilepsy, their carers,
and for those working with people with
epilepsy there will be an independent
programme organized by the IBE, held
in conjunction with the Congress.
This programme is currently under
development and promises to be one
of great interest to all those living with
epilepsy, their carers, for parents of
children with epilepsy, and for allied
health professionals working with people
living with epilepsy.
Participation in the IBE People’s Day
provides the opportunity for participants
to connect with people living with
epilepsy from across the regions. In the
sharing of experience, you will have the
chance to discover how universal the
epilepsy experience is. Regardless of
whether you are living with epilepsy in
Mongolia or Melbourne, when it comes
to personal challenges and aspirations,
parental fears and concerns, or the need
for better understanding of epilepsy in
the community and the workplace, it
is the commonality of experience that
unites us all.
Epilepsy Australia encourages all
people living with the experience of
epilepsy, allied health workers and those
with an interest in the impact of epilepsy
on daily living to participate in what will
be a very informative programme for
consumers.
Ongoing information on programme
details, announcements, and registration
can be obtained from the 8th Asian
Oceanian Epilepsy Congress website
www.epilepsymelbourne2010.org
We look forward to seeing you in
Melbourne in 2010.
Epilepsy: Top of Mind
Symposium
T
he Epilepsy Society of Australia
will hold their 24th Annual
Scientific Meeting in Perth in November
2009 at the Perth Convention Exhibition
Centre, WA.
Dr Charles J Vecht, an international
expert on tunour and epilepsy, and Dr
Kurupath Radhakrishnan, renowned
neurologist and epileptologist, will be
the keynote speakers. More information
can be obtained from http://sapmea.asn.
au/conventions/esa2009/
28
A
one day symposium for people with
epilepsy will be held on Sunday 1st
November, preceding the ESA Scientific
Meeting.
The varied programme includes: the
issues of generic medications, epilepsy
and sleep, longer term effects of AEDs
and future treatment options; key
challenges for adults living with epilepsy
including enhancing seizure control,
the impact of epilepsy on cognition and
memory, and employment; a session
focused on topics relevant to parents
of children with epilepsy looking at
intractable epilepsies, the effects of
epilepsy and medication on learning and
behaviour; and key challenges and issues
for adults living with Tuberous Sclerosis
Complex.
The preliminary programme and
registration form can be downloaded at
epilepsyaustralia.net
The Epilepsy Foundation of Victoria (EFV) invites you to become an
occasional participant in the Epilepsy Foundation’s ongoing research
programme into the social effects of living with epilepsy and caring for
those with epilepsy. We need people to tell us about their experiences and
views of living with epilepsy.
What is EFV Research Participant Register (RPR)?
The Epilepsy Foundation of Victoria’s Research Participant Register is an
ongoing initiative created in 2006 to establish a unique research source
from which we can learn much valuable information about epilepsy that
can be used to improve the lives of people affected by this condition. This
is the only register of its kind in Australia and we have not so far learned of
another anywhere else in the world.
Why is it important to join in this register?
The World Health Organisation has stated that: the social consequences of
epilepsy are often more difficult to overcome than the seizures themselves.
They are talking about issues like finding and keeping a job, transport and
driving and the attitudes of other people towards epilepsy. Yet in Australia,
there is hardly any reliable research into these social consequences. If the
Epilepsy Foundation of Victoria gathers detailed factual evidence of this
kind, we will be even more successful in lobbying governments for a better
deal and a fairer go for all those living with epilepsy.
Who is eligible to join in RPR?
Following individuals are eligible to join the register.
o Individuals who have epilepsy/seizure disorder
o Carers who look after someone with epilepsy/seizure disorder
Are there risks to me as a research register participant?
This is not a medical or clinical research register. From time to time, we
might contact you and ask if you would be prepared to answer some
questions over the phone or fill in a mailed questionnaire. Sometimes there
will be small group meetings of participants at the Foundation’s office in
Camberwell or a regional centre to which you might be invited.
Does putting my name in the RPR obligate me to
participate in future research projects?
Putting your name does not obligate you in any way. You may be too busy
or just not feel like participating at that time – that’s fine! But if you do, any
information you provide will be confidential, anonymous, safeguarded and
only used for specified research purposes.
How would I benefit by joining the register?
There may be opportunities to talk with people living with epilepsy and
those who work with them. Most importantly, this is an opportunity to be
part of a longitudinal study of living with epilepsy – the first of its kind.
If you are interested in learning more about this research contact:
Dr Jaya Pinikahana ,Principal Social Researcher
Phone: (03) 9805 9125 Fax: (03) 9882 7159
jpinikahana@epilepsy.asn.au
29
Recommendations
from the Epilepsy Library*
Beyond my Control
Stuart Ross McCallum. Bloomington, iUniverse Inc. 2008
When it comes to
sourcing information
about epilepsy, from
the obscure to the
most up-to-date
research, Pauline
Brockett, specialist
librarian at the Epilepsy
Foundation of Victoria,
cannot be outdone.
The EFV Library is the
most comprehensive
epilepsy collection
in the Southern
Hemisphere and her
intimate knowledge
of the collection is
outstanding, given that
it includes more than
2,500 books, audio
visual materials, CDs,
journal and extensive
information files
containing both current
and retrospective
literature on many
subjects associated
with both the study
of, and living with,
epilepsy.
* Books, DVDs and CDs
are available for members
to borrow from the EFV
Library.
30
S
tuart Ross McCallum shares a true account of his battle with
epilepsy – beginning with the peculiar sensations he experienced
as a teenager that led to his diagnosis and concluding with his eventual
recovery from temporal lobe lobectomy. McCallum shares how the
perception of the disease and the socially unacceptable behaviours
that occurred as a result of his seizures eventually forced him to risk
everything – he made the life-altering decision to undergo two brain
operations that he hoped would provide freedom from a life of instability,
danger, and stares from strangers.
Walking the Black Dog
Ingi, St Vincent’s Foundation, St Vincent’s Hospital,
Melbourne. 2008
D
epression is one of the most common and disabling health
problems of modern times with profound impacts both for the
individual sufferer as well as family members and their offspring. This
booklet is by a remarkable individual who has walked the difficult road
of bipolar disorder and has learnt ways in which to cope with it better,
and to live her life well and fully despite it. It is written in a very simple
way but its content is profound. It ends with a message of hope and
gives some guidance to help people in a practical way by using the
extended metaphor of the Black Dog. The Illustrations and the layout
make it particularly suitable to younger readers. This will be a valuable
resource for people who are struggling with a mood disorder, as well
as, in particular, their children. Copies can be ordered from the St Vincent’s Foundation:
www.svhm.org.au email: foundation@svhm.org.au phone: 03 9288 3365
Control
A film by Anton Corbijn. DVD 2005
Ian Curtis has aspirations beyond the trappings of small town life in
1930’s England. Wanting to emulate his musical heroes, such as David
Bowie and Iggy Pop, he joins a band, and his musical ambition begins
to thrive, Soon though, the everyday fears and emotions that fuel his
music, slowly begin to eat away at him. Married young, with a daughter,
he is distracted from his family commitments by a new love and the
growing expectations of his band. The strain manifests in his health.
With epilepsy adding to his guilt and depression, desperation takes
hold. Surrendering to the weight on his shoulders, Ian’s tortured soul
consumes him.
face2face
Wayne Pfeiffer is the newest addition to the Epilepsy Foundation of
Victoria. Joining the EFV in January this year as General Manager
Client Services, this position is integral to the EFV Strategic Plan to
build the capacity of the organization to meet the needs of people
with epilepsy and their families.
B
eing a strong believer in
education and the capacity this
has to change lives, has a lot to do
with my background. Born in Ballarat
and growing up in a caravan park in
Sunshine (part of Melbourne’s Western
Suburbs), I realized early the importance
of education and working together to
bring about change, and developed
the belief that my work should carry a
greater meaning and purpose to make a
difference in people’s lives.
After completing a Bachelor of
Education in Secondary Education I
discovered teaching secondary school
wasn't for me and quickly moved into
health promotion and research with the
Cancer Council of Victoria’s SunSmart.
From here I moved to adult education
and community development and,
while working in lower socioeconomic
areas of Melbourne's West, developed a
passion for working closely with people
and communities.
Completing a Graduate Diploma in
Community Education from Monash
University triggered a move to a
Problem Gambling Counselling Service;
firstly as a Community Educator,
promoting harm minimization, and
then as manager of the team of social
workers, psychologists and community
development workers.
A move to Ireland in 1999 was
the catalyst for a career change into
disability services when appointed
Disability Services Manager for County
Clare with the Mid Western Health
Board. The position had a budget of $12
million and management responsibility
for all Disability Services delivered by
the Health Board, and accountability
for monitoring of service agreements
with funded community organizations
in the County. At this time, to bolster
my management practice, I undertook
a Graduate Certificate in Management
with the Australian Institute of
Management.
Ireland features strongly in my life
as my wife Irene and son Lucas (7)
are both Irish born while my daughter
Chloe (11) and I wave the Australian
flag. Irene is currently completing a
Masters in Health Promotion.
On my return to Australia I joined
Scope (formerly the Spastic Society
of Victoria) as a member of the senior
management team. At Scope I was
at the forefront of the organization in
exploring person-centred approaches,
and in using Australian Business
Excellence tools to improve the
organization’s systems and processes,
resulting in better outcomes for
individuals.
Scope continues to contract the
Epilepsy Foundation to provide training
to its disability support staff because
of the level of expertise the Foundation
provides and the critical nature of
epilepsy. I believe people working in the
health, aged care and disability sectors
need greater skill development in
epilepsy care and management. Crucial
to this is the development of epilepsy
management plans that accurately
record the person’s epilepsy medication
and seizure management.
While at Scope, I was awarded a
Department of Human Services Ethel
Temby overseas study tour to Italy,
Ireland and the United Kingdom to
examine individualized services.
Further study and Ireland will no doubt
feature strongly in the future.
To date, time has been spent mapping
and reviewing services offered to
people with epilepsy and their families,
identifying achievements to date and
working on the design of a state-wide
service delivery model. An evaluation
and gap analysis will soon be done, with
feedback from the people we support
helping to further define our work.
I enjoy working collaboratively and
inclusively with a team to bring about
change, and have found the EFV team
very welcoming and extremely open
and willing to try new things and
consider new possibilities.
I therefore have no doubt that the
opportunities and challenges I saw
when I accepted the position will hold
true for the future.
“
“
Wayne’s role is to take what EFV does best and to grow and
develop this in a sustainable way. With a firm belief in taking a
person-centred approach that builds programs around individuals
and families across their life cycle, he has substantial experience
working with people to promote self-management and wellbeing, with a strong commitment to
social justice. He has a broad range of community work and management experience in health
promotion, adult education, community development, counselling and disability services both
in Victoria and in the Republic of Ireland.
31
32

Issue 1 - Epilepsy Australia

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