FOOD INTOLERANCE NETWORK FACTSHEET
Epilepsy and diet
Introduction
Reader reports
The science
Scientific references
More information
Keywords: epilepsy, seizures, absence seizures, convulsions, spasms, additives, salicylates, amines, diet, propionic acid E280, calcium propionate 282
READER QUOTE "When I was a little girl, my brother had severe epilepsy with many seizures every day.
When my mother finally started us on an additive free diet on her own initiative, the number of seizures
dropped by 75%. My brother was able to come outside and play with me for the first time. But it was too
late to prevent the brain damage that had already occurred and he ended up in an institution"
Elimination diets for epilepsy
If there are symptoms of food intolerance other than seizures – e.g. headaches and migraines, irritable bowel symptoms or behavioural problems – elimination diets are likely to help with seizures. The direct link between food and seizures was discovered by accident when researchers who were conducting trials of elimination diets for treatment of ADHD-type behaviours noticed that children who also had epileptic seizures became seizure free during the diets (Feingold 1979, Egger et al, 1989).
The elimination diet that we recommend as the easiest, most effective and most logical is a 3 week trial of the RPAH Elimination Diet. This diet is based on avoiding certain food additives, salicylates and some other food chemicals and gluten and dairy if necessary. There are numerous reports that certain food additives can cause seizures e.g. propionic acid and other propionates are used as preservatives 280-283, most commonly as bread preservative 282. Excessive propionic acid in the body is known to cause seizures in both humans and rats. MSG type additives (620-635) can cause problems in rats, humans and dogs. It is well known that salicylates in drugs can cause seizures, less well known that dietary salicylates can do the same in people who are very sensitive. Epileptics in our network have reported seizures triggered by additives, dietary salicylates and/or amines, see stories below.
Additives in medication: about 25% of epileptic children have been shown to react with seizures to artificial colours and benzoate preservative (E211), so why would you give these additives to epileptics? Some of our readers question whether their children's medication hasn't caused more problems than it cured, since additives such as colours, preservatives and flavours are often used in epilepsy medication, mostly unlisted.
Ketogenic diets for severe uncontrolled epilepsy
Keto diets were introduced in the 1920s and regained popularity due to the 1997 movie with Meryl Streep First do no harm: the true story of one woman's struggle against a narrow-minded medical establishment. It is based on the story of Charlie Abrahams, who went from having 90 epileptic seizures per day to none after going on the ketogenic diet.
* Water only (fasting) diet - the most effective keto diet seems to be water only for 3 weeks, used in the 1920s, and you can see from the stories below that mothers often notice seizures disappear when minor gastrointestinal illnesses leave their children unable to eat for a few days, suggesting that their seizures are linked to their food intake. However this diet is no longer used for obvious reasons.
*The classic keto diet (high protein low carb) is very difficult and requires initial hospitalisation, close supervision by a medical team and total commitment for 3 months at the very least.
* The modified Atkins diet is much easier to use. It was discovered by accident when the parents of a child whose hospital admission for the keto diet was due in one month started to follow the Dr Atkins' New Diet Revolution book as preparation. Within two days her seizure rate went from 70-80 per day to zero. The little girl continued on the Atkins Diet. Eventually she managed to reduce her seizures by more than 90% and halve her dose of anti epileptic medications. This diet is the one now recommended in the latest scientific papers.
Keto diets do not work for everyone and not everyone achieves perfect seizure control. We are concerned about items promoted as completely 'safe' on hospital keto diets such as artificially coloured, flavoured and preserved diet drinks and jellies. Some of our readers report that they have to combine the ketogenic diet with failsafe eating (free of additives, low in salicylates, amines and flavour enhancers) to get best results, see their stories below.
See 8 page collection of stories on epilepsy, epileptic, fits, seizures (includes those below)
[1143] Severe epilepsy improves on additive free diet, too late to prevent brain damage (October 2012)
When I was a little girl, my brother had severe epilepsy with many seizures every day. My mother finally started us on an additive free diet on her own initiative and the number of seizures dropped by 75%. My brother was able to come outside and play with me for the first time. But it was too late to prevent the brain damage that had already occurred and my brother had to go into an institution. – 2012 roadshow report
From [565] Dramatic reduction of seizures on an additive free diet (May 2007)
I took my 4-year-old daughter off all additives, preservatives and colours. In one week she has had a dramatic reduction of mostly myoclonic type seizures, down from her usual 2 - 40 throughout each day. Obviously, 2 or so on a really good day and 40 on the worst of days. – Karen, by email
[118] 102 artificial colour: seizure due to cinema popcorn (August 2001)
My cousin has been having horrendous seizures for the past 2 years since she gave birth to her son. I have been trying to convince her to go on the elimination diet, as she's already noticed some foods trigger the attacks. She feels like she is going to die when she has one. She finally read the section in your book about Kerry and has found out that one of her biggest seizures which was triggered by popcorn at the pictures, was probably due to tartrazine (102) - the cinema just changed the company they buy the popcorn from. - WA
[1151] 104: Quinoline yellow artificial colour and epilepsy (October 2012)
We have been additive-free for over a year. We were able to drop my daughter's epilepsy medication and she enjoyed more than a year trouble-free until experiencing a seizure after eating Strepsils throat tablets during a cold. A call to the pharmacy revealed that all Strepsils tablets contain artificial colours and this particular product, Honey and Lemon, contains Quinoline yellow artificial colour 104, not permitted in Australia (at that time), and not listed on the label. – by email
(After this episode I complained to the TGA that Strepsils with an unlisted artificial colour not permitted in Australian food could be purchased from supermarket shelves next to foods that require artificial colours to be listed on the ingredient label. The TGA official who took my complaint laughed. Soon afterwards, quinoline yellow 104 was approved for use in Australian foods – and colours either artificial or natural still don't have to be listed on the labels of pharmaceuticals according to TGA regulations. – Sue)
[1152] Artificial red colour: cause of seizures in a breastfed baby? (October 2012)
I am scared for my friend and her one year old breastfed baby. While she is breastfeeding, there are many times when the baby seems to "clamp down" on the breast and briefly stay motionless. Doctors have only recently suggested that these episodes are actually seizures. My friend is addicted to a particular red soft drink (artificially coloured of course) and drinks several litres per day. Could this cause the problem? She refuses to give up this drink and doctors are now saying there could be permanent brain damage. – by email
[1153] Colours and flavours in epilepsy medication (October 2012)
When the doctor recommended ADHD medication for our 4 year old daughter, I was reluctant because she was already on high doses of epilepsy medication. Instead, we decided to try the elimination diet. Her behaviour improved out of sight and her general overall health improved ... changing her epilepsy medication to colour and flavour-free was harder than it seems as most kid size doses come in flavoured syrup. – by email
[1154] 282: Bread preservative and seizures, extreme sleep disturbance, 'out-of-control' behaviour (October 2012)
I have a 2 year old son whose diet I have recently changed due to the behavioural problems that we were experiencing with him. My son was a big bread eater. While I was pregnant with him I was eating 10 slices of bread a day with 282 bread preservative and by the age of 18 months my son was eating the same amount. He was always a very difficult sleeper and has been having seizures since he was 18 months old. Since changing his diet to preservative free bread , he has gone from a monster to a reasonably placid child, he sleeps well, and his seizures have improved remarkably. Update: in the last 6 months he has had only three seizures. – by email, NSW
[1155] 282: Bread preservative caused suspected epilepsy (memory lapses) (October 2012)
I thought you might be interested in this story from our group. One of the boys was exhibiting forgetfulness, inattention and memory lapses so noticeable that he was referred for brain investigation of suspected epilepsy. However, he never reached the tests - he stopped eating preserved bread first, and his problems stopped. – by email, Victoria
[1156] Ketogenic and failsafe 10 years on (October 2012)
I contacted you in 2002 when my daughter was 4, and seizures started out of nowhere and we couldn't get them to stop - she had 4 seizures with fever between age 14 months to 3.5 years. Then at age 4.5 years she had a 7 minute seizure without a fever. Eight weeks later she had multiple daily seizures. Nine months later we were on our third med, and she was only continuing to escalate every 5-10 days without seizure control.
You told me that if she was chemically sensitive then the drugs the doctors were recommending may make her worse. So I put her on both the failsafe and ketogenic diet, and her seizures stopped! Thank God!! And thank you!!! Well, she was on the ketogenic diet for 4 years, and near the end the dietician wanted me to put her on carnitine, I emailed you and Howard said it was an amine and so I didn't use it. (It took the dietician years to admit it was the right decision – though she has been an amazing support in helping to create ketogenic failsafe meals!) Three months later we were able to successfully wean our daughter off the ketogenic diet, and she has remained seizure FREE!
She is now tolerating sals but still failsafe re: additives and amines. She gets twitches and jerks at night when she has amines, to varying degrees and in direct proportion to the amount of amines ingested.
Thank you a thousand times over and over again, failsafe eating was key to saving her life! (She was so ill that she had lost her reflexes—if she tripped, her hands didn't even come up to protect herself). She is now almost 14 and thriving!!!!!) – by email, Canada
[922] 635: Epileptic seizures in a dog due to flavour enhancer (June 2010)
My Jack Russell (Eddie) had epileptic fits as a puppy and I noticed that they always seemed to occur after giving him scraps from junk food we were eating. McDonalds food in particular seemed to cause him to have fits. The vet dismissed my theory and offered to give my dog a highly toxic barbiturate epilepsy medication. I refused the medication and adopted a wait-and-see approach. I researched the relationship between food additives and epilepsy in children because there was not much information about dogs. Based on this, I banned all artificial colours/flavours and preservatives and my dog went from severely fitting to having no fits at all for the past 4 years. When I told my vet he dismissed my theory that food additives were the cause of my dog's epileptic fits and stated he had simply 'grown out of it'.
About 2 weeks ago I let my dog lick a cup from which I had just finished drinking instant soup. As I was doing it I thought: I shouldn't be letting him have this. I had become complacent because my dog had not had a fit in so many years. Within an hour of licking the cup he had his first epileptic fit in over 4 years. I felt terrible and immediately read the ingredients list. The instant soup contained flavour enhancer 635.
I have no doubt whatsoever that food additives caused the epileptic seizures in my dog. I have no doubt whatsoever that giving him an all natural diet cured his epileptic seizures. I have no doubt whatsoever that flavour enhancer 635 caused his recent seizure.
The information on your site confirmed that I was on the right track with my treatment of his seizures. Without sites like yours I would be faced with the dismissive attitude of my vet and my dog may have spent a lifetime on toxic medication for no reason. As it is - I have returned to a strictly natural diet for my dog and he has not had another seizure since. I would never risk poisoning him again with these additives and I hope my experience helps someone else. – Pamela, by email
[950] Another dog with fits due to additives in dog food (July 2010)
I was particularly fascinated by the reader story [922] on the dog with fits. One of our rescued dogs was adopted from the vet. She was doing very well on their dry food (additive free) and we decided to keep using this. OK so far. Then we adopted another dog - this time a pure bred and we fed her the same food. But we decided this was getting very boring and in a creative (oh no!) moment, we decided to mix a bit of canned dog food just to give the dry food some taste variety. Although I was aware of failsafe food, I didn't think to read the labels - given that the dogs would eat absolutely anything they can find (we live out bush) the last thing I thought of was food sensitivity. Kai started to fit in groups of three about every 2 weeks. Two vets encouraged us to put her on medication (would have been for life) but we instinctively felt we should wait a little longer before we did this.
Our neighbour had been a vet nurse and casually remarked that they had found additives caused dog fitting. The tinned foods! We stopped them (have since added fresh dog food without additives to their diet). No more fits. We told the vet who was dubious about the cause of them. We had no doubts after one night when, after being fit free after we removed tinned food, she had three fits. I thought that our theory had been disproved until my husband realised that without thinking he had opened a tin I had neglected to throw away -- and had given her a small amount. No more fits ever since. – Jane, NT
From [356] One-liners (Nov 2004)
Our Beagle dog's seizures are related to ribonucleotides (flavour enhancer 635). – SA
[1157] Home cooking has reduced Bear's seizures (October 2012)
Bear stole my husband's heart. At the animal shelter, Dan saw Bear going through his obedience commands and fell in love. We took Bear home on January 18, 2001, and he promptly stole my heart too. Bear had his first seizure in September of the same year. The vet said it could be a 'one off," so we waited. We hoped that the terrifying Grand Mal was a 'one time only"; no such luck. A cluster of 2 GMs, a month after the first, had us back in Dr. Shelton's office and Bear starting on Phenobarbital. All this time, we were feeding him Science Diet. Bear began to gain some weight on the Phenobarbital, so we switched him to Science Diet Weight Control Formula; the seizures just kept coming. We fell into a 7 to 10 day routine, with some variation, but not much.
I found the Guardian Angels website. After a lot of reading, I decided to try the homecooking. I put him on the Healthy Adult Diet. What an amazing change! He went from a seizure cycle of bad clusters every 7 to 10 days to a 43 day stretch seizure free. At the end of that 43 day run, he had one, only one, GM. That was just the beginning of the benefits Bear has reaped from this diet. That extra 5lbs that we couldn't get off him just melted away, he stopped grazing and now licks his bowl clean, and his coat is puppy fur soft and so glossy. Bear's vet says that Bear eats better than he does.- Mary Kearney http://canine-epilepsy-guardian-angels.com/healthy_diet.htm
[1158] Is it really epilepsy – or benign nocturnal myoclonus? (October 2012)
Rhythmic jerking while asleep which stop if gently woken are frequently misdiagnosed as epilepsy in children. A British Medical Journal reports 15 cases of misdiagnosis, seven of which resulted in anticonvulsant medication for periods ranging from three months to seven years, without benefit. And a reader reports it's not just children.
A few years ago, while living in the UK, my then 32 year old very fit healthy husband started to have nocturnal partial seizures (or so it seemed). He was extensively and exhaustively investigated, which was very reassuring. He was told he had epilepsy, put on carbamazepine, and had to leave his job as a result as his work involved driving.
On our second and final visit to the neurologist he was told "there is nothing wrong with you". I took issue with this and asked why in that case he was on antiepileptic drugs, had been told to revoke his driving licence, and had been told he had epilepsy. Eventually we were reduced to the degrading situation of borrowing a video camera to tape these episodes, we felt so much like no-one believed us. On watching the recordings, he was clearly experiencing episodes of paroxysmal nocturnal myoclonus - which I later discovered as an entity in the small print in big fat textbooks.
To cut a long story short, I concluded the problem was stress related - or more accurately, bullying at work (in a very subtle, unobtrusive way) - the bullier (a colleague) took a dislike to him when he made a polite request of the boss to work elsewhere as the open plan office which was full of smokers was causing him some discomfort.
I have learnt from this that stress can cause all sorts of symptoms - and that when specialists say there is nothing wrong with the patient, what they mean is they don't know what is wrong - and frequently have not looked beyond the physical in their considerations. - by email, NZ
Further reading: Benign sleep myoclonus of infancy mistaken for epilepsy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125884/?tool=pubmed
Differentiating between nonepileptic and epileptic seizures. http://www.ncbi.nlm.nih.gov/pubmed/21386814
[011] Epilepsy and food chemicals (May 1999)
Thanks for your book Fed Up and web-site. They're very useful and an eyeopener, especially since I suffer from epilepsy. My epilepsy is well controlled by medication so it is difficult to determine what causes a seizure. However, I know that feeling fuzzy headed, over-talkative & rambling, are precursors to a seizure - especially feeling fuzzy headed. I notice the fuzzy-headedness, first, after not sleeping well.
I will experience a bad night's sleep through restlessness and at some point during the night I will wake up and start scratching my forearms. Waking up in the morning is difficult. The next day I can't think, especially to do math, or to perform conceptual thinking such as writing an essay. Reading is a problem during these times - I'll find that I can't concentrate, nothing seems to "get in" and I keep re-reading the same sentence hoping to extract meaning (eventually I give up).
The worst foods are chocolate (from the food intolerance point of view, this is amines) and dairy - but I have to eat a lot of dairy for about a week before I notice any effects. I went on the "fit for life" diet and noticed that juices were causing similar problems - I sort of became addicted to orange juice (from the food intolerance point of view, salicylates and/or amines) and was having major mood swings. The same problems occurred when I tried the "liver cleansing diet." Chocolate is, by far, the worst. I find that I am not good at sticking to diets, but I keep trying - especially when things get bad! – by email
[434] My daughter's epilepsy (August 2006)
My daughter is 7 years old. She has development delay, autism and was diagnosed with Lennox Gastaut Syndrome at the age of two. She began the ketogenic diet in 2000 and stayed on it for three years and three months.
My daughter became seizure free after 14 months on the ketogenic diet - it took nine months to wean her off all the drugs and another five months to take out all the foods that were causing her problems. I found the diet very difficult as I didn't have enough medical backup to see me through it. A mum from the kuekids list was my only support and I would not have done it without her.
I was so tired and felt so sorry for my daughter being on such a restricted diet and yet still having seizures but I had to see if the diet actually worked on its own. Her last seizures were all occurring during her sleep and I thought "at least she's not hurting herself" but I was forever running into her bedroom to help her get through her seizures. I was so frightened that I had done the wrong thing, weaning her off of all her drugs and the seizures were not getting any better.
Three months before my daughter became seizure free, I was lucky to find a paediatrician who believed in what I was doing. She actually advised me not to reintroduce the drugs. The best thing I ever did was getting rid of the drugs altogether because I was then able to fine tune.
What I did find, however, was that whatever my daughter ate really affected her. Two days before she became seizure free I removed carrots from her diet because that was the only food I was giving her in the last meal that wasn't failsafe and a miracle happened. The following night she had a cluster of 20 very slight myoclonics and that cluster was the last seizure she ever had (April, 2001). She has been off the keto diet since July 2003, however she remains failsafe and dairy free. I have since tried her on carrots (moderate in salicylates - S) and found her to be having staring sessions (were they absence seizures?) and keep her off of foods with beta-carotene .
It's paid off in the long run. She is talking, doing well at school, playing with other children, enjoys her food (although I still have her on a mild diet watching what she eats) and is generally happy 100 per cent of the time. I don't know what I would have done without the ketogenic diet and failsafe foods. – by email
Note: a medically supervised ketogenic diet is available through the Children's Epilepsy Program at Royal Children's Hospital in Melbourne for children with severe uncontrolled epilepsy http://www.rch.org.au/cep/treatments/Ketogenic_Diet
FROM kuekids website: Jessica's keto diet
Jessica was born on the 15th April 1992. There were no problems or complications with the pregnancy or birth. She was a happy baby, developing well, then in October 1992 her life changed. She was sitting on the bed, when her eyes suddenly rolled back and her head rocked. It was so brief that I wondered if I had imagined the incident. After three more of these episodes, the paediatrician decided she should have an E.E.G. Little did I know that this would be the first of many.
By the time she was 4 ½, she had endured numerous E.E.G.s, blood tests, MRI and Lumbar Puncture. Her seizures consisted of absence, atypical absence, myoclonic and atonic drops. The anti-epileptic medication she was given created severe side effects that slowed her development considerably, yet still did not reduce the 50 plus seizures she was having each day. Added difficulties she experienced were cerebellar ataxia, muscle weakness, poor balance and hand tremors. Other problems included aggression, insecurity, bed-wetting, poor circulation, heat sensitivity, dummy sucking, inability to close her eyes and regular waking every night.
In November 1996, Jessica was admitted to the R.C.H. for 3 days of 24-hour monitoring. We left hospital with gastroenteritis where she stopped eating for over a week. (I could not even get her to take her medication.) Even though she was very sick, her seizures had decreased greatly. Because of this, our neurologist offered the opportunity to try Jessica on the Ketogenic Diet. A consultation was organised with the dietician. She held little hope for Jessica having any success with the diet due to her eating habits and food favourites. She had always eaten as much or as little as she wanted each meal and some days would eat a lot while other days very little. Her favourite foods included bread, cereals, pasta and her favourite (and only) drink was milk.
Even with this knowledge, on the 3rd March 1997, Jessica was admitted to the Royal Children's Hospital in Melbourne to prepare for the commencement of the diet on the 5th March. She started the first of two days fasting, still having seizures. She refused all fluids offered to her. She was becoming dehydrated and hypoglycaemic. By the afternoon protocol had to be ignored and the neurologist ordered cordial for her. That was the last time she had a seizure.
The change in Jessica was so dramatic. Her computer teacher wrote, "I am amazed at the difference in Jessica". Her early intervention teacher wrote, "I have noticed a dramatic change in Jessica's behaviour and disposition".
I spent endless hours, sometimes till 4am, creating new meals. Rather than the normal 3 meals a day that you would feed a child on this diet, she required 6 meals a day. Each meal had to be weighed and cooked individually. You cannot prepare one big meal, then divide it into six. Some meals had 15 individual foods in them. (Normally on the diet it is recommended to use 4-5 individual foods in a meal.) I felt my entire waking (and sleeping) hours were consumed with calculating, weighing, preparing, cooking, feeding and washing dishes. I also had a 10-month-old son with his own individual needs – including being fed.
The diet is extremely time consuming. A total commitment from all is required. Family life is changed considerably. Spontaneity is removed from the vocabulary. A doctor once described this diet as "the diet from hell". Living with a child who has numerous, uncontrolled seizures has to be lived to truly understand the anguish experienced. The diet is made more difficult due to the lack of knowledge and support available in Australia. In America, there is a network of support and expertise from professionals to parents - working together. Without the support from my mother, and a computer donated by my father, as well as a program designed by my father to calculate meals more easily, this diet would have been virtually impossible to maintain. It is essential for anyone attempting this diet to have a support person who can ease the continual demands. I did however find that the pressure eased after a while, the unknown suddenly became known and life settled more into a routine.
Jessica's good-natured acceptance of the diet was unbelievable. In planning for both her 5th and 6th birthday parties, Jessica ensured that her guests would not miss out just because of her diet. She insisted that the party food should consist of sausage rolls, party pies, cocktail frankfurts and she helped make the chocolate crackles, honey joys and fairy bread. During the party she even handed around the food without being tempted to "sneak" anything for herself. She requested an ice-cream birthday cake and I managed to include 10 grams into her meal. I tried as often as possible to include into her meal any foods she requested. (Even if this was only 2-3 grams. She preferred some rather than none.)
The total effectiveness of the diet not only gave reason, it also meant she became drug free on the 1st of July 1997. Most children will not have the same success as quickly or with such acceptance (some not at all). To see your child's eyes light up though, make it worth the effort.
We were told by her O.T. that because of her hand tremor she would need a computer for school as she would be unable to write. Her first day of school in 1998 she came home with a drawing. I noticed her name written on the work and I asked her if she had written it. She replied with conviction in her voice "Of course I did." She continues to do well at school and enjoys reading, writing, drawing, computer, tennis, swimming, horse riding and walking her dog. Without this diet, most of these things would not have been possible.
Update: Since February 2001, Jessica has been using "failsafe" foods with the ketogenic diet.
– from http://home.iprimus.com.au/kuekids/story/page1.html
FROM kuekids website: Leah's keto diet
Leah was born on the 11th July 1991. She lives in Adelaide, S.A.
She started having febrile convulsions when she was 9 months old.
At the age of three, Leah was diagnosed with absence seizures.
Prior to commencing the diet, she was averaging 60 seizures per day and was taking Lamictal and Epilum.
Leah came to Melbourne in February 2000 to commence the ketogenic diet at the RCH.
In mid July this year, Jeanette decided to commence weaning the drugs.
Leah is seizure free & med free.
Leah's story as told by Leah.
A KETOGENIC LIFE CHANGE.
Hi, I'm Leah and this is a story about how we fought my epilepsy and how the ketogenic diet has changed my life.
A HARD TIME.
Quick get the ambulance! I was 3 and I had epilepsy and febrile convulsions. They were not fun. I had been born July the eleventh 1991. I was diagnosed with epilepsy when I was 3. My neurologist was doctor Michael Rice. But since then I have been to other neurololgists. My doctor now is Claire Pridmore. Mum and Dad were having a hard time because when me and my sister Rachael were born Mums pelvis split and she had to be in a wheelchair for 9 months. We had a lady come to help us. When Mum didn't need a wheelchair anymore she was still in a lot of pain and also had to deal with me having epilepsy.
GROWING OLDER.
I was growing older and I was going to school. That's when it got harder for me. I was having 100 seizures a day. I would have to have the teacher hold my hand near roads and it would interrupt my work. My friends didn't understand and they still didn't understand when I explained it to them. Some kids teased me and I would get really upset. There were times when I thought, I am sick of it. Why can't I be like a normal kid.
A HARD DECISION.
My Mum had heard about a diet that helps control epilepsy on a program called Good Medicine. She did research on it and asked me if I would go on it. I wasn't quite sure but then I said yes. I was ready to face a challenge! My Mum thought that God had performed a miracle by bringing the diet to her attention and it was.
A TRIP TO MELBOURNE.
To start the diet we had to go to Melbourne but we weren't going to start the diet on our first trip. Mum had to meet the dietitian so that was fun. Our friend came along too. I really liked her. I mean the dietician. I really liked the markets a lot. I had to have an EEG while we were there.
GOING TO HOSPITAL.
We were going to Melbourne a second time to start the diet and my Dad and sister were coming too. When we got there I was admitted to hospital and I met Liz the hospital co-ordinator and the neurologist there. My bed was next to a boy named Billy. He had cancer and he was funloving and always tried to scare me by going raaahh! I miss him a lot. I vomited in the shower once. My sister didn't want to leave me and she cried every time she had to leave the hospital.
HOME AGAIN!
I was really excited to be home! I was now on the diet and having some yummy meals. I was having less seizures now. Mum was cranky because the neurologist had just dumped her. Now she just gets all her help from the ketogenic mailing list. It's good when me and the other kids can write letters to each other.
OUR SUCCESS.
Well I was having 100 seizures a day and now I am having none. I'm off all my medication. I feel great. Mum has worked really hard seeing she has her own problems. The dietician in Melbourne is having a baby, and has retired, so I now have a new one but I haven't met her yet.
TOTALLY FREE.
One day I will be totally free and won't need to be on the diet anymore. I'm ten and the diet has changed my life knowing that I'm not the only one on the diet and that I'm not the only one who has suffered.
THE END.
"By the time I had finished reading this I was awash with tears...tears that released pent up emotions...and tears coz I saw again the miracle that is taking place as my daughter is emerging from the grip of sz'z and medication. Hope you don't mind me sharing this......as the loved ones of these special kids we can all relate to this in some way... "
Jeanette, mum to Leah 10 yrs. – from http://home.iprimus.com.au/kuekids/keto/leah.html
FROM kuekids website: Isabella's keto diet
Our daughter, Isabella, turned 6 in November last year, eight days before commencing the Ketogenic Diet at the Royal Children's Hospital in Melbourne. She has been seizure free since Day 4 in hospital!
Isabella had been having anything in the range of 10-40+ myoclonic, drop attack and absence seizures per day. From the onset at 3 1/2 years of age, the prognosis was pretty bad. I remember her neurologist explaining that myoclonic-astatic epilepsy is particularly nasty because it's difficult to treat and is usually associated with developmental delay. For 2 1/2 years the weight from our shoulders never lifted as we watched Isabella's development and whole person slowly deteriorate.
Isabella has used three drugs, initially Tegretol, currently Epilim and Lamictal in various combinations with no seizure control whatsoever only a myriad of subtle and not so subtle side effects. Nobody told us that after two or more drugs had failed to control seizures, the chances of having success with others were as slim as 10%. So for 2 1/2 years we were blindly optimistic that with every change in medications there would be some hope that Isabella's condition would improve."
"Two weeks before starting the diet, Isabella's EEG showed chaotic brain activity which her neurologist described as "shocking". She queried Isabella's need for a helmet, suggested we start rethinking her schooling and talked about introducing a third drug, Topamax. The outlook was looking as grim as ever and, it seemed, to textbook exactly as her neurologist had prognosed 2 1/2 years earlier.
Slowly but surely Isabella's condition has been breaking our hearts because we knew that behind all these seizures was a beautiful and very normal six year old.
Family and friends had forgotten what the old Isabella was like... Now seizure-free and with Epilim almost eliminated, people find the change in Isabella quite striking she's so switched on, alert, socially aware, agile, and constantly looking for new challenges to make up for lost time. She's feeling brilliant and it shows in so many ways. She's very proud of herself and understands that it is she, herself, who is "getting rid of the jerks". Her eyes are wide open, not half closed.
I'm very pleased to say that Isabella's neurologist was most impressed with the different person she saw before her when we visited her just before Christmas.
Some people envisage that the diet would disable a family's lifestyle (in fact this was one of the reasons many people gave for not trying the diet). Well, not ours! For the first time in 2 1/2 years, Isabella is able to join us at the dinner table (she'd always sit at the "little table" so she wouldn't slam her head). And this is only one example of how the diet has "enabled" us to be a family again. Many, many people said that the diet "is very hard". But nothing's harder than watching your child trapped and lost in a state of uncontrolled epilepsy.
The diet does seem daunting at first, that's for sure. But in no time at all it really does become routine. I enjoy planning and making Isabella's meals because nothing feels as good as having such a positive effect on her wellbeing and, for the first time, having control over her epilepsy.
It is still amazing to us that this diet can have such a profound effect on seizure control when the drugs had failed so badly. We understand that if a patient responds well to the diet initially, then it is likely that the diet will continue to succeed. This too is amazing to us, given the brief honeymoon periods Isabella has experienced with drugs.
No-one talked about the Ketogenic Diet in a positive light until we came in contact with Epilink (a service provided by the Epilepsy Foundation of Victoria) through which we learned of other parents in Australia who'd had success with the diet. We were put directly in touch with these parents and also, via the internet, a huge network of parents around the world currently working with the diet. These parents have helped us through any day-to-day issues that have arisen. We've also worked very closely with two supportive dieticians at the Royal Children's Hospital in Melbourne. Craig and I know that without the support and encouragement from parents who've worked with the diet, and the opportunity to initiate the diet at the Royal Children's Hospital, we would not be in the position we're in today.
If only we'd known more about the powerful antiepileptic effect this diet can have for some children and been given it as an option earlier, then perhaps we could have prevented Isabella's development delay, not to mention all the heartache along the way. Needless to say, our only regret is that we didn't try the diet sooner.
For now we are taking things one day at a time and appreciate that it's still early days. We are extremely grateful for and making the most of each seizure-free day. – Gabrielle, from http://home.iprimus.com.au/kuekids/keto/isabella.html
FROM kuekids website: Samara's epilepsy story: adverse reactions to medication
Samara had her first seizure when she was just over 3 years old. The doctors told me it was a febrile convulsion, but she didn't have a temperature. It turned out to be a grand mal (tonic clonic). It was an isolated incident...until she turned 5.
She started blanking out, staring off into space. 10 seconds here and there. I didn't take much notice of this however, as I thought she was tuning me out as kids tend to do. One day she kept falling off her bike, falling over for no apparent reason and walking around in circles. She did all this in the space of 6 hours. I couldn't figure out why. When she went to have her immunisations for school entry, she blanked out. The doctor asked me if she had epilepsy as she was having a petit mal (absence).
That was the start of the nightmare that became my life. Samara was officially diagnosed with epilepsy on the 1st June 1998. She had an EEG and a blood test. She was started on Epilim and I was hopeful. I couldn't figure out, "Why me?"
The Epilim turned my placid, happy child into a monster. She picked fights with her brother and sister who were 10 and 8 at the time. She either wouldn't eat or would eat non-stop. She was almost uncontrollable. She either suffered with nausea, headaches and lethargy (tiredness) or she would be hyperactive and barely sleeping. I took her to a reputable paediatrician who chose to increase the dosage. This increased the side effects. These gradually lessened, but her seizures increased. She was now having at least 2 dozen seziures a day. The paediatrician again chose to increase her dosage. I told him that the medication was affecting her. In 4 months, she had gone from 10 sec absence seizures every couple of days, to every day falling off her bike, trying to take her clothes off, saying strange things and wetting herself while she was having seizures. He basically told me that she was normal and there was nothing wrong with her and that I was a neurotic, overwrought mother, who was making a mountain out of a mole hill. After consultation with my G.P. (who is a gift from above), we managed to get an appointment with a Neurologist. I was so happy thinking that I would finally get somewhere. How wrong I was.
The Neurologist was supposed to be the best in Victoria. When we went to the appointment, he looked at Samara and asked about her history etc. I told him about the Epilim. He put Samara on Diamox. For about 4 weeks Samara lived on 1 weetbix, 1/4 sandwich and a salada a day. She wouldn't eat and kept saying she wasn't hungry. She started to lose weight, and was walking around like a zombie. I rang her Neuro. He told me to stop the Diamox and restart the Epilim with a higher dose. Her seizures didn't improve. After more phone calls the Neuro decided to give her a video EEG.
In March 99, we sat in hospital for 6hrs. Samara only had six 20sec seizures during that time. The Neuro then decided to add Zarontin to her meds. Her seizures didn't improve. We went back to the paediatrician for a general check up. He told us he couldn't help us and not to make any more appointments. We didn't know what to do! Samara was going to our GP at least 3 times a week trying to get some answers. In September 99, we went back to the Neurologist. Samara was having numerous seizures, and still having all the problems I have mentioned. I also noticed she was having problems with memory, reading words etc. He again increased her meds. At this point she was on 800mg of Epilim and 1500mg of Zarontin per day. Our GP referred us to another paediatrician, who was much more receptive to our problems. He was reluctant to reduce her meds. Samaras problems increased.
One day at school she collapsed. She had an absence seizure that lasted for 25 mins. Her pupils were fixed and dilated, and she was unresponsive. She was rushed to hospital. They couldn't tell me what was wrong. Nearly every day the school was ringing me saying Samara had collapsed or that she was asleep and they couldn't wake her. She would sleep for up to two hours a day even at school. She had a drop attack one day while climbing steps of the slide at our local pool. There were two teachers present and they still couldn't stop her. She needed medical treatment for concussion. She needed stitches after a drop attack while playing in the back yard - she cracked her head on the concrete foot path. We were still seeing the GP a couple of times a week. He decided to do a drug level blood test. Both he and I were shocked her levels were so low, but for some reason, her seizures had lessened number of days. We couldn't figure it out, particularly when she was taking such a large amount. He decided not to reduce her dosage for fear of complications. Samara went from a bright, happy, healthy girl, to a child who suffered major side effects - she dragged herself around, slept all the time and she only ate on a good day. She also started to show signs of developmental regression. She forgot how to write her own name, tie her shoes and write and recognise her ABC's. She couldn't ride her bike - she couldn't remember how to balance properly. Samara knew how to do all these things before she started kinder. It was heartbreaking to watch my daughter slowly deteriorate before my eyes. I was going out of my mind.
On Thu 2nd Dec 99, we saw her Neurologist again . After travelling for 2hrs, we sat in the waiting room for 1hr 15 mins. When we finally got to see him, he looked in her eyes and told her to hold out her arms and wiggle her fingers. I told him about all the problems and he told me not to worry and that she was OK and would get better. We were in his office for 10mins! I couldn't believe the so called experts told me that she was normal.
On Wed 8th Dec 99, Samara vomited (she had been doing this at least once a week for a month). I had a house full of people. I cleaned her up and she vomited. Again I cleaned up and she vomited. She then "passed out". I couldn't rouse her for at least two hours. She woke up, had a drink, then went back to sleep. She seemed OK so I didn't worry. The next day she was tired and didn't eat much. I put it down to the day before.
On Fri 10th Dec 99, I kept Samara home from school just in case. We went shopping with my mum. Samara didn't eat brekky so I gave her a sandwich for lunch. It didn't stay down. She was like a rag doll. I had to put her in the trolley because she was unable to walk. I gave her some water to try and get some fluids into her. They didn't stay in either. I took her to our GP. He took one look at her and rang the ambulance. She was rushed to the Bendigo Base Hospital with severe dehydration. At the hospital she was hooked to a drip. They tried to feed her jelly but it wouldn't stay down. She suffered dramatic weight loss - losing 2.5kgs in 3days. She couldn't keep her meds in, but her seizures lessened. She seemed to improve. By Sunday morning she managed to keep down a bowl of jelly. In the afternoon she dozed on and off. In fact she slept most of the day away. She woke up around 7pm for about an hour, then went back to sleep. She seemed unresponsive but would "come out of it" every now and then.
On Mon 13th Dec 99, Samara slept the whole day. She was awake long enough to have a bath. It was like bathing a newborn because she couldn't support herself. She was now throwing up again. The paediatrician told me she had Gastro as it was going around. She didn't have diarrhea! She continued to lose weight.
On Tues 14th Dec 99, I arrived at the hospital to a mad panic. The paediatrician was concerned as she had not improved over night. That day became the worst day of my life. He told me she was slipping in and out of consciousness, and that we were losing her. If we didn't do something immediately, she wasn't going to make it! Just what every mother wants to hear. I freaked. Thank goodness for my girlfriend. She cried, I cried, even Samaras little friend was crying. Samara was rushed to the Royal Childrens Hospital. Within 3hrs of being there, she had an EEG, X-Ray, blood tests, and urine tests. At one point, they thought she had some sort of encephalitis. The blood tests and urine tests came back. It was the drugs. Samara's pancreas shut down and stopped working. Her liver had started to breakdown and her kidneys stopped functioning. There was a concern she might end up with diabetes. All this was due to the drugs. An MRI showed a shadow on her brain. This was thought to be a growth of some sort but further investigation showed atrophy of Samaras brain. That means her brain started to break down as well. That was why she had developmental problems. The drugs were literally eating away her brain. As I said before, it was the worst day of my life! The drugs were stopped immediately. By the third day, she had improved and was starting to eat. She hadn't been able to keep anything down for a week. HER SEIZURES STOPPED!!! Gradually Samara was able to eat more and more. Samara lost a total of 6.5kgs in 2 weeks. She had another EEG. She was also having blood tests every day and urine tests twice a day. She came to dread those ladies with the striped shirts.
On Mon 20th Dec 99, we brought Samara home. No drugs and still no seizures. I was so happy. The "new" Neurologist told me no more drugs unless her seizures started again. On Xmas day 1999, she had about 20 seizures in about 10 mins. I was devastated. I thought here we go again. We went back to the RCH. She had another EEG which confirmed the seizures. Samara's medical problems improved and so did her developmental problems. She is almost back to normal. She has only just reached her pre-sickness weight. She is still skinny. She didn't gain back her healthy looking body. Samara was started on Lamictal. Due to her previous problems, she was started on a very low dose.
At the start, her seizures lessened, but then they started to increase again. Every two weeks we increase her dose by 1/2 a tablet. It works for the first week, but by the 2nd week her seizures are back to normal. We have tried vitamins - everything - nothing worked. We even tried adding a tiny amount of Epilim. That didn't work either. She was up to 100mg per day. Her Neurologist didn't want to increase her dose any more. He suggested the Ketogenic Diet. I'm very confident, but apprehensive. After all our struggles, I can only hope that this will work.
If there is any advice Sam can give to other parents it is this: "Trust your instincts. You know if your child is not acting normal. When something is wrong, if in doubt get another opinion, even if it's 2 or 6, until you're satisfied. Make people listen to you, especially the medical people. If only someone had listened to me, I wouldn't have had to go through all that I did. Samara probably would have gone on the diet sooner, and would probably be free of seizures and drugs. Once again trust your instincts. You know your child better than any one!" – from http://home.iprimus.com.au/kuekids/keto/samara.html
Medications used
Epilim first drug used - created numerous side effects and increased seizures
Diamox second drug used - created numerous side effects
Zarontin third drug used - given when Epilim had been restarted - created numerous side effects and increased seizures
Lamictal last drug used - effectiveness fades fortnightly
[1159] Hoping for something better and I believe I have found it (October 2012)
I have a five year old who has epilepsy as well as well as host of behavioural and learning problems. From reading your book I think he may have a food intolerance problem because he gets sick when he eats pizza or hot chips. I can't get in to see a dietitian for the elimination diet for five months. At the moment I have eating only from the shopping list in your book. It has only been 5 days and I think I can see an improvement. I am worried about the medication that he is on (Tegretol) as I have read that it can cause some of the aggressive behaviour that he exhibits. I have looked through some of the other medications used for epilepsy and it doesn't seem that any them would be suitable.
2 weeks later: I have had had my son on the diet for about 2 weeks now and have good success. The last 3 days he has been wonderful and I am hoping that it continues. I borrowed your book (Fed up with ADHD) from the library and love it.
Next day: I took my son to his paediatrician yesterday. We are changing him from Tegretol liquid to white Epilim tablets which seemed to be the one with the least additives and hope it all goes well. We have had 4 really good days now, the best he has ever been. I don't think his doc could believe the difference in him because all the time they have only ever offered medication for his behaviour which I refused hoping for something better and I believe I have found it. – Sonia, by email Feb 2007
[568] Epilepsy and additives (August 2007)
I am a new convert to failsafe eating and I am a sufferer of epilepsy. We initially began the diet for my son's problems but having read the information on the effects of additives I am also taking care to follow it myself. My doctor recently changed my medication back to Lamictal and I was surprised and annoyed when I found the drug has had blackcurrant flavouring added to it so that it can be dispersed in water or chewed. This hasn't always been the case. A number of years ago I was taking this tablet and it was free of artificial flavours. I continue to swallow the tablets whole as they are not large or difficult to swallow and find this new format totally unnecessary. I am very disappointed with the fact I have no option to take a tablet that does not contain flavourings as I need this medication for seizure control. I believe many sufferers of epilepsy are sensitive to additives and I remember as a child of 12 when I first started having seizures that I made a connection with dark coloured icy poles and the simple partial seizures I suffered. I voluntarily stayed away from the raspberry flavours.
Many of the anti-convulsants used for seizure control are coloured to differentiate the strengths of the tablets so this problem is not just peculiar to my medication. I would be interested to know if you can help in this area. – by email (The best way for you to cause change is to complain directly to the drug manufacturers. For an account of how the pharmaceutical industry works and why doctors don't understand adverse reactions see http://davidhealy.org/books/pharmageddon-is-the-story-of-a-tragedy/)
- Elimination diets for epilepsy
If there are symptoms of food intolerance other than seizures – e.g. headaches and migraines, irritable bowel symptoms or behavioural problems – elimination diets are likely to help with seizures.
The direct link between food and seizures was discovered by accident when researchers who were conducting trials of elimination diets for treatment of ADHD-type behaviours noticed that children who also had epileptic seizures became seizure free during the diets (Feingold 1979, Egger et al, 1989).
"Of the 45 children who had epilepsy and recurrent headaches, abdominal symptoms, or hyperactive behaviour, 25 ceased to have seizures and 11 had fewer seizures during diet therapy. Of 24 children with generalised epilepsy, 18 recovered or improved (including 4 of 7 with myoclonic seizures and all with petit mal) as did 18 of 21 children with partial epilepsy." Of eighteen others who had epilepsy alone, none improved on diet.
Egger and others. Oligoantigenic diet treatment of children with epilepsy and migraine. J Pediatr 1989 http://www.ncbi.nlm.nih.gov/pubmed/2909707
An additive free diet
Artificial colours and benzoate preservatives: – in the study above, 25% of epileptic children challenged with artificial colours and preservatives reacted with seizures.
Glutamates (MSG) - in the study above, 5% reacted to yeast (glutamates) and there are numerous reports that MSG type additives (620-635) can cause problems in both humans and dogs. MSG has been shown to cause convulsions in rats
Nemeroff CB, Crisley FD. Monosodium L-glutamate-induced convulsions: temporary alteration in blood-brain barrier permeability to plasma proteins. Environ Physiol Biochem. 1975 http://www.ncbi.nlm.nih.gov/pubmed/1213027
Propionate preservatives (280-283) - propionic acid in the body can cause seizures in both humans and rats, including absence seizures in humans. Propionic acid and other propionates are also used as preservatives 280-283, most commonly as bread preservative 282.
Rigo FK et al. Propionic acid induces convulsions and protein carbonylation in rats. Neurosci Lett 2006 http://www.ncbi.nlm.nih.gov/pubmed/16997462
Haberlandt E and others, Epilepsy in patients with propionic acidemia, 2009, http://www.ncbi.nlm.nih.gov/pubmed/20020396
The RPAH Elimination diet
Though not reported in the medical literature specifically for epilepsy, this diet is an easier and more logical alternative to the Few Foods diet that works for the same symptoms .
Allen DH and others, Adverse reactions to foods. Med J Aust. 1984 http://www.ncbi.nlm.nih.gov/pubmed/6482784
- Ketogenic diets for severe uncontrolled epilepsy
Ketogenic diets were introduced in the 1920s and regained popularity due to the 1997 Meryl Streep movie First do no harm: the true story of one woman's struggle against a narrow-minded medical establishment. It is based on the story of Charlie Abrahams, who went from having 90 epileptic seizures per day to none after going on the ketogenic diet.
*(1) The most effective keto diet seems to be water only (fasting) for 3 weeks. In the 1920s, Dr Hugh Conklin's 3 week fasting (water only) diet was said to cure most epileptics, and our readers report their children improve dramatically when temporarily too ill to eat, suggesting that something in their diets is causing the problem. (Warning: do NOT try this at home!) http://en.wikipedia.org/wiki/File:Conklin_Fasting_-_NewYorkTimes.png
*(2) The classic keto diet (high protein low carb) as used by Charlie Abrahams is very difficult and requires initial hospitalisation, close supervision by a medical team and total commitment for 3 months at the very least, more likely 3 years.
*(3) The modified Atkins diet is much easier to use. It was discovered by accident when the parents of a child whose hospital admission for the keto diet was due in one month started to follow Dr Atkins' New Diet Revolution book as preparation. Within two days her seizure rate went from 70-80 per day to zero. This little girl continued on the Atkins Diet and ultimately managed to reduce her seizures by more than 90% and halve her dose of anti epileptic medications.
Doctors are now suggesting that dietary modification for severe intractably epilepsy start with the Modified Atkins and proceed to the classical ketogenic only if necessary.
Why does the ketogenic diet work?Doctors don't know. Foods and food chemicals that have been associated with seizures include artificial colours, preservatives, MSG, salicylate-containing foods and drugs, amine containing foods and cow's milk. These are the foods and food chemicals that are restricted on the RPAH elimination diet and long term failsafe eating recommended on this website. From the failsafe point of view, the ketogenic or low carb diet restricts high carbohydrate foods such as bread, cakes, hamburgers, donuts and snack foods that are likely to contain nasty food additives. It also restricts salicylates because it forbids fruit juice, fruit and many vegetables. This could be a reason why researchers who use the ketogenic diet with epileptic children have observed positive changes in seizures and behaviour as well – and why some mothers find that foods promoted on the keto diet, such as artificially coloured and flavoured jellies, are not suitable for their children. (Speculation for future research: interestingly, since propionic acid is so strongly related to seizures -see below - another reason why the ketogenic diet prevents seizures may be that ketogenesis interferes with natural propionate production in the body. This association has recently been linked to autism: autistic symptoms in children - with Clostridium difficile due to early antibiotic therapy - who take Vancomycin antibiotics which reduce excessive propionates in the gut have been shown to improve during the course of antibiotics and relapse afterwards. Saccharomyces boulardii probiotics - e.g. in Travel Bug probiotics - can achieve the same thing with far less risk. It would be interesting to see whether a course of Saccharomyces boulardii could also reduce seizures - S) .- Adverse reactions to medications
Additives in medications are a major problem for epileptics who would like to try failsafe eating because medications for epilepsy generally contain artificial colours that have been found to be associated with both seizures and behavioural problems.
We have received numerous complaints from epileptics that their medications contain artificial colours (unlisted), preservatives and flavours. One study found that 25% of epileptic children experienced seizures when challenged with disguised artificial colours and benzoate preservative (Egger, 1989). From our reader reports it is hard not to conclude that epilepsy medication prescribed by doctors has in fact made some epileptic children worse. Researchers have also noted that medications may also be a problem with the ketogenic diet - due to high carbohydrates in sugar syrups and other sweeteners (McGhee and others, 2001).
You can see the reasons for this in Dr David Healey's account of why the power of the pharmaceutical industry has caused increasing adverse reactions to medications and why doctors fail to recognize adverse events happening to their patients http://davidhealy.org/books/pharmageddon-is-the-story-of-a-tragedy/
Fasting diet
http://en.wikipedia.org/wiki/File:Conklin_Fasting_-_NewYorkTimes.png
Low salicylate, additive free diets
Feingold BF. Dietary management of nystagmus. J Neural Transm. 1979 Feingold attributed a variety of neurologic and neuromuscular disturbances including grand mal, petit mal and psychomotor seizures to dietary additives and salicylates http://www.ncbi.nlm.nih.gov/pubmed/469522
Allen DH and others, Adverse reactions to foods. Med J Aust. 1984 http://www.ncbi.nlm.nih.gov/pubmed/6482784
Convulsive effects of salicylates
Chyka PA et al, Salicylate poisoning, Clin Toxicol (Phila). 2007;45(2):95-131. http://www.ncbi.nlm.nih.gov/pubmed/17364628
Schubert TA. Salicylate-induced seizures in a dog. J Am Vet Med Assoc 1984 http://www.ncbi.nlm.nih.gov/pubmed/6511630
Few foods diet, effects of food additives
Egger and others. Oligoantigenic diet treatment of children with epilepsy and migraine. J Pediatr 1989 http://www.ncbi.nlm.nih.gov/pubmed/2909707
Ketogenic and Modified Atkins diet
Auvin S. Should we routinely use modified Atkins diet instead of regular ketogenic diet to treat children with epilepsy? Seizure. 2012 http://www.ncbi.nlm.nih.gov/pubmed/22425426
Kossoff EH et al, A modified Atkins diet is effective for the treatment of intractable pediatric epilepsy. Epilepsia. 2006 http://www.ncbi.nlm.nih.gov/pubmed/16499770
Runyon A and So, The Use of Ketogenic Diet in Pediatric Patients with Epilepsy ISRN Pediatr. 2012 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3434405/
Freeman JM et al, The ketogenic diet: one decade later, Pediatrics. 2007 http://www.ncbi.nlm.nih.gov/pubmed/17332207
Propionates and convulsions
Rigo FK et al. Propionic acid induces convulsions and protein carbonylation in rats. Neurosci Lett 2006 http://www.ncbi.nlm.nih.gov/pubmed/16997462
Haberlandt E and others, Epilepsy in patients with propionic acidemia, 2009, http://www.ncbi.nlm.nih.gov/pubmed/20020396
MSG and convulsions
Nemeroff CB, Crisley FD. Monosodium L-glutamate-induced convulsions: temporary alteration in blood-brain barrier permeability to plasma proteins. Environ Physiol Biochem. 1975 http://www.ncbi.nlm.nih.gov/pubmed/1213027
Shovic A et al, 'We think your son has Lennox-Gastaut syndrome'--a case study of monosodium glutamate's possible effect on a child. J Am Diet Assoc. 1997 Jul;97(7):793-4. http://www.mail-archive.com/This email address is being protected from spambots. You need JavaScript enabled to view it./msg03930.html
Arauz-Contreras J, Feria-Velasco A. Monosodium-L-glutamate-induced convulsions--I. Differences in seizure pattern and duration of effect as a function of age in rats. Gen Pharmacol. 1984;15(5):391-5. http://www.ncbi.nlm.nih.gov/pubmed/6510674
Is it really epilepsy?
Benign sleep myoclonus of infancy mistaken for epilepsy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125884/?tool=pubmed
Differentiating between nonepileptic and epileptic seizures. http://www.ncbi.nlm.nih.gov/pubmed/21386814
Adverse effects of medication
Healy, D Pharmageddon, 2012 http://davidhealy.org/books/pharmageddon-is-the-story-of-a-tragedy/
Additives to avoid in food and medication (white tablets are safest)
The easiest diet to do is the RPAH Elimination diet. You only need to try it for 3 weeks to know if it will work. It is best to be supervised by a dietitian. Introduction to Food intolerance factsheet
The Modified Atkins Diet – leading doctors now recommend starting on the Modified Atkins Diet which is much easier than the classical ketogenic diet and seems to work as well for many people. http://site.matthewsfriends.org/uploads/pdf/BDADieteticsToday.pdf
Dr Atkins New Diet Revolution book http://www.amazon.com/Dr-Atkins-New-Diet-Revolution/dp/006001203X
The ketogenic diet is usually for children who have at least daily seizures and have had adverse reactions or failed to respond to at least two antiepileptic medications. It is essential to do this diet supervised by a doctor and an experienced dietitian because it can be very difficult
If you want to try the classic ketogenic diet in a hospital program:
http://www.rch.org.au/cep/treatments/Ketogenic_Diet/
There is more about it here (In Australia, an old website)
http://home.iprimus.com.au/kuekids/keto/page2.html
There is more about it here (in the USA, a current website)
http://site.matthewsfriends.org/index.php?page=getting-started#.UG468FGzFhU
First do no harm - 1997 movie with Meryl Streep "the true story of one woman's struggle against a narrow-minded medical establishment" www.imdb.com/title/tt0118526/ It is based on the story of Charlie Abrahams, who went from having 90 epileptic seizures per day to none after going on the ketogenic diet. http://www.charliefoundation.org/
Introduction to food intolerance
www.fedup.com.au
The information given is not intended as medical advice. Always consult with your doctor for underlying illness. Before beginning dietary investigation, consult a dietician with an interest in food intolerance. You can see our list of experienced and supportive dietitians http://fedup.com.au/information/support/dietitians
© Sue Dengate updated October 2012
