Hi everyone. I am in England but would like to share my daughters experience.
For 8 months the doctors have been pumping Hannah with anti-epileptic medicine. It started as one medicine in November last year, then increased to 2 medicines a month later as she was too hyperactive and they wanted to calm her down. She continued to have seizures. She has had MRI, EEG's and various other tests to rule out the more unpleasant conditions. At my last meeting with the neurologist three weeks ago I asked to be put on ketogenic diet as I was sick of all the side effects of the medicine. She is irritable, emotional, her speech is undeveloped and it is noticeably worse since starting on the medicine. The doctors would say this is the epilepsy and not the drugs. She is clumsy and although they wont confirm this I believe that it is a cocktail of the drugs she is receiving. I hate the drugs and I feel so upset having to put three syringes in her mouth every morning and night. Because of the hope of the diet (but it being a 6 month waiting list) I began to do my own research on the internet regarding diet and epilepsy and that is when I started to think that I could make changes myself in a safe manner with a view to reducing her seizures. Here I read about G.A.R.D

Hannahs seizures are mild in the sense that they are not grand mal seizures and involve only her head nodding and muscles twitching slightly in her arms and hands. Before she started on the medicine 8 months ago they were very infrequent. The daily amount of seizures has fluctuated since then and would be anything between 2 and 6. The medicine in my opinion has made absolutely no difference other than make my daughter unhappy and makes myself and her family more concerned. Her seizures last a couple of minutes, maybe a little longer and she is always tired after. She has a cluster of head drops. When I first started to notice them before she went on the medicine it was like she was falling asleep with her head going down, but then she would wake up again. Imagine someone sitting in a chair nodding off. It was like that. Other than 2 episodes in the last 8 months where she was a bit rigid and her lips went a little blue, hannah has not shown any signs of any other type of seizure. However, this hasnt stopped the hospital from feeling that it is an evolving form of epilepsy.


I have spent hours scanning the internet every night but always making sure that it is information and suggestions that are repeated more than once on different epilepsy web pages and not just some random person saying what they would do. I read a great detail about Glutamate and its affect on the brain. The doctors hate the internet. I hate talking to them about what I have read. I feel like they will laugh at me. From what I understand, I think Glutamine is an amino acid involved in transmitting information in the brain. Glutamate in food can cause harm to the brain when messages are overwhelming. Glutamic acid from food sources can get into the brain injuring and killing neurons. I am not saying I know all of this. I am just saying this is familiar and repeated information I have come across.

By adapting her diet and eliminating the harmful ingredients that are contributing to her seizures, I want to increase Hannahs health and raise the threshold for epileptic fits to occur. Does this make sense? I am trying to find the cause of the seizures as epilepsy is a symptom of a condition or illness, where as the hospital are trying to control the symptoms. This to me isn’t a solution. Its just delaying something.

Apparently, our genetic make up makes some people more prone to illness and disease than others. We all have viruses in our body that usually remain dormant until something aggravates them so much to the point that the body cant cope and the person become ill as their immune system cannot fight it any longer. My mum died of breast cancer aged 34. Completely random as no one else in our family had it. Prior to getting epilepsy, Hannah had more than her fair share of chest infections. The doctors actually gave her an inhaler to use which did absolutley nothing. To me it seemed like she had quite a weak immune system. I have read that one of the causes of seizures is chronic infection. Maybe Hannahs genetic make up didnt give her the protection that she needed (like my mum) and this infection buried itself in her brain and started to cause seizures. I dont know I am just looking for answers.

I saw that dairy and wheat have high levels of glutamate. I stopped these at first. Within one day hannah stopped having her seizures that occurred in the day. Prior to this it was common for her to have one or two when lying in bed after waking in the morning and she would always have one or two later in the day. However, she continued to have them in the morning. Hannah had loved her milk. She would have about 8oz in the morning to drink. 6oz with her breakfast and another 8oz at night. This is full fat too. I was lead to believe by what you read and see on the television that milk was so important. I know different now. She also used to have weetabix and banana for breakfast. She now has oats and fruit of wheat

I have since excluded soy and corn and gluten

Hannah has adapted well to the changes I have made. Lots more poos. She seems happier but that could be because I insisted that the neurologist decreased the third medicine as I really didnt like the side effects. I am in touch with a qualified Nutritionist who is a tutor in nutritional healing. I am providing Hannah with foods that contain calcium which she will be missing from her dairy.My neurologist has advised me to speak to a dietician also through my doctor which I will also do. He wasnt appreciative of the reduction in seizures through her change in diet.

I have read that Medicines that control seizures may interfere with the bodys ability to use certain nutrients. Most vulnerable are those on multiple drugs and high doses. This is Hannahs situation. How do I know if her body is absorbing everything it should be and that my hard work isn’t going to waste?

Hannahs seizure seems to occur in the morning now either on waking when she is still lying down or within an hour of waking up. I am now trying to get a lot more water into her as that is SO important. Her body needs to become more alkaline. Simple things like soaking her oats in water overnight and giving her warm water with a splash of orange juice at night instead of rice milk. I am learning so much along the way.

I really believe her diet will be the key to controlling her seizures. Who knows what the long term effects of medicine might be.


So many tests they could do but I guess it boils down to the fact that the dont want to spend money. Like hair strand test would tell them about any inflammation in the brain. Seizures could be as a result of nutrient def, enzyme def, intolerance tests and so on. Because they don’t want to do all these tests they just say its idiopathic meaning they don’t know the cause. I feel that if they tried hard enough they would find it. Instead they offer the simplest and easiest method for parents which are the drugs. As no one knows the long term side effects of the drugs people are usually happy to just deal with the symptoms. I want more. All these possible tests are diet related and not one mention of the importance of diet and controlling seizures has passed the doctors lips. I know they are trained in a certain way and that probably using prescribed medicine is the way to go but they are human after all. Surely if someone like me can look deeper into a problem, then why don’t they have the same instincts? I guess if they offered a natural approach then they wouldnt be a doctor would they? Doctors treat symptoms.

I really believe that it is possible to reverse some conditions by cleansing the body of all the horrible things that have been thrown at it and by introducing nice things in the way of good food to help it heal. I understand it can take time especially as Hannah has been having daily seizures for 8 months. It angers me so much that the medical profession pray on the vulnerability of parents who have to trust their doctor because they know nothing else. I believe that if hannahs medicine had worked after the first drug was introduced and her seizures stopped then I would have settled for that. I believe I have been given the chance to do what should have been suggested to me in the first instance by the doctors rather than shoving this unnatural rubbish down my poor daughters throat. Doctors dont have to recommend seeing a dietician or nutritionist but for a parent like me who was gobsmacked to discover she had epilepsy, being given all options would have been nice so that i could decide which I thought was best for her.

Thank you for reading this. I just wanted to give some insight into my experience with epilepsy and diet. Obviously, it is up to every person or parent what they think is right and I am by no means suggesting changes you can make. Hannah still has her medicine but I will be speaking to the neurologist about weaning her off when he gets back from holiday. I know that medicine must never just be stopped. Good luck everyone. Sometimes simple changes can make a difference, thats all I am saying and it doesnt have to be forever. Just until they are better.
Debbie
xxx