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Epilepsy, diet and behaviour

Epilepsy in children and adults is frequently associated with ADHD-type behavioural symptoms. Trials of both the Few Foods and the ketogenic low carbohydrate diet have found that symptoms of both behaviour and epilepsy can improve on restricted diets although epilepsy without behaviour problems is unlikely to improve.

 

The Few Foods diet with epilepsy and behaviour in children

 

In a British study in 1989, 63 children with epilepsy tried the Few Foods diet. Most of the children (45) had epilepsy with migraine or hyperactivity or both, and 18 had epilepsy alone. Of the 45 with other symptoms of food intolerance, 75% per cent improved - 50% ceased to have seizures and 25% had fewer seizures. Hyperactive behaviour improved in all those who ceased to have seizures and some of those whose seizures did not improve. None of the 18 who had epilepsy alone improved (Egger and others, 1989).

 

The ketogenic diet with epilepsy and behaviour in children

 

The ketogenic (low carb) diet has been used since the 1920s for children with difficult-to-control epilepsy, and it has long been known that on this diet, children’s behaviour as well as epilepsy improves. In a study using the ketogenic diet at Johns Hopkins Hospital in Baltimore, 65 children with children with difficult-to-control seizures started the diet. After one year, 34 children remained on the diet. Mean seizure frequency had decreased from 25 per day before diet to less than two per day. There were also significant behavioural improvements in attention and social functioning (Pulsifer and others, 2001).

 

The ketogenic diet in rats

 

Medical experts do not know why the ketogenic diet helps with difficult-to-control seizures, nor why behavioural symptoms in epileptic children improve when children go on the ketogenic diet for their epileptic symptoms, although the behavioural improvement seems to be unrelated to seizure control. In an experiment using two different types of ketogenic diets with rats, researchers found that, for unknown reasons, both groups of rats showed a significantly lower activity level than the rats on the control diet and suggested that this behavioral change may relate to the improved behaviour seen when children with symptoms of ADHD are placed on the ketogenic diet (Murphy and others, 2005).

 

A long term follow up of 150 children who had used the ketogenic diet for less than a year found that whether or not the diet was effective, most families did not regret trying it and would recommend it to others (Marsh and others, 2006).

 

The ketogenic diet in practice

 

In Australia, many children on the ketogenic diet eventually switch to failsafe eating for behaviour control after they are able to come off their epilepsy medication, see the kuekids website below.

 

Food chemicals associated with seizures

 

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.

 

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 why researchers who use the ketogenic diet with epileptic children have observed positive changes in seizures and behaviour as well.

 

Medications for epilepsy 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. Medications may also be a problem with the ketogenic diet due to high carbohydrates in sugar syrups and other sweeteners (McGhee and others, 2001).

 

Reader’s stories

[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 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.

 

Note: a medically sypervised ketogenic diet is available through the Children’s Epilepsy Program at Royal Children’s Hospital in Melbourne. You can ask your doctor for a referral, see below.

[565] One-liners (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 before" – Karen.

Further reading - abstracts of all papers mentioned below can be found at www.pubmed.com

 

Egger J, Carter CM, Soothill JF, Wilson J. Oligoantigenic diet treatment of children with epilepsy and migraine. J Pediatr 1989;114(1):51-8.

 

Keene DL. A systematic review of the use of the ketogenic diet in childhood epilepsy. Pediatr Neurol. 2006 Jul;35(1):1-5.

 

Lefevre F, Aronson N. Ketogenic diet for the treatment of refractory epilepsy in children: A systematic review of efficacy. Pediatrics 2000;105(4):E46. (free full text at www.pubmed.com)

 

MacCracken KA, Scalisi JC. Development and evaluation of a ketogenic diet program. J Am Diet Assoc 1999;99(12):1554-8.

 

Marsh EB, Freeman JM, Kossoff EH, Vining EP, Rubenstein JE, Pyzik PL, et al. The outcome of children with intractable seizures: a 3- to 6-year follow-up of 67 children who remained on the ketogenic diet less than one year. Epilepsia 2006;47(2):425-30.

 

McGhee B, Katyal N. Avoid unnecessary drug-related carbohydrates for patients consuming the ketogenic diet. J Am Diet Assoc 2001;101(1):87-101.

 

Murphy P, Likhodii SS, Hatamian M, McIntyre Burnham W. Effect of the ketogenic diet on the activity level of Wistar rats. Pediatr Res 2005;57(3):353-7.

 

Najbauer J, Schuman EM, Mamelak AN. The aspirin metabolite sodium salicylate causes focal cerebral hemorrhage and cell death in rats with kainic acid-induced seizures. Neuroscience 2000;99(1):107-17.

 

Nemeroff CB, Crisley FD. Monosodium L-glutamate-induced convulsions: temporary alteration in blood-brain barrier permeability to plasma proteins. Environ Physiol Biochem 1975;5(6):389-95.

 

Nordli DR, Jr., Kuroda MM, Carroll J, Koenigsberger DY, Hirsch LJ, Bruner HJ, et al. Experience with the ketogenic diet in infants. Pediatrics 2001;108(1):129-33.

 

Pulsifer MB, Gordon JM, Brandt J, Vining EP, Freeman JM. Effects of ketogenic diet on development and behavior: preliminary report of a prospective study. Dev Med Child Neurol 2001;43(5):301-6.

 

Schubert TA. Salicylate-induced seizures in a dog. J Am Vet Med Assoc 1984;185(9):1000-1.

 

Australian support website for children with difficult-to-control epilepsy using the ketogenic diet and/or progressing to failsafe eating: http://home.primus.com.au/kuekids/home/

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 find a supportive dietitian through the Dietitians Association of Australia (http://www.daa.asn.au/find_a_dietitian/index.asp?pageID=2145835649) or write for our list of supportive dietitians (confoodnet@ozemail.com.au)

 © Sue Dengate update September 2006