The life of Brugt Warnar with epilepsy.

My name is Brugt Warner and this is the story of me living with epilepsy. I was born on the 18th February 1943. You can see a copy of my birth certificate here:

It was very simple because I was born during the  Second World War. It is only a piece of paper typed by my father.

So, how did I end up with epilepsy? I am not really sure, but as a child I had once fallen of a small wall injuring my head: you can still feel the dent there.

At first, there were no problems, but then I started experiencing absences (or “petit mal” / loss of consciousness seizures). In the beginning I only had a few of these but later they became more frequent: finally I was experiencing 20 seizures an hour. Most people use bicycles in Holland, unfortunately I was not allowed to cycle anywhere anymore because I became a danger to myself and others in the street.  I had become a problem for my parents and I was only 8 years old. I ended up staying in hospital for 9 months until the doctors finally said that they could do nothing for me. At that stage my parents and I had to live with a disease knowing that there was no possibility for cure.

My parents tried alternative therapies, but these had no effect. Then they heard of an institution, Meer en Bosch in Heemstede (a village 30 kilometres west of Amsterdam). I was sent there and they gave me a diet of 2:1*. It was successful and I was sent home again. I went to a normal school and everything seemed to be solved.

There was only one problem: I was always hungry. We spoke to the specialist about this but he said everything was alright. I should have been getting enough calories to live and grow. He couldn’t understand why I was always hungry. I felt well though and was happy not to be losing  consciousness. However because I was always hungry I started eating sweets and other snacks including bread and fruit. This was the beginning of the end for me: my epilepsy started again. I was again experiencing 20 seizures an hour.

My parents sent me back to Meer en Bosch in Heemstede and they gave me the same diet again. This time however it did not work. So they changed the ratio of my diet to a 4:1* mix.  I was instructed to fast for two days first, living only on a little bit of water. After these two days I was given the diet and it had an immediate impact. The seizures went as quick as it came.

I was later told that the fasting played a big part in my recovery. I thought it was just the diet. Unfortunately I could not stand the diet and kept vomiting: this went on for many days. It was about a week before I could start eating again. Everybody was convinced that the diet had a positive affect on the epilepsy but I could not keep any food down.
 
In Heemstede 50 % of the boys in my house some form of high fat diet. They were either on a 1:1, 2:1 or 2.5:1*. The staff had little experience with the 4:1 diet. Finally a decision was made to allow my body to recover and become healthy and strong again. I enjoyed my time in Heemstede and I was allowed to eat anything but I was still experiencing the seizures.
 
After a few months they started me with the diet 1:1* and then a month later with 2:1* and again months later with 3:1* and at the end they gave me 4:1*.  The results were fantastic. I did not experience any seizures. My epilepsy had been cured and I was healthy again.  

So, what did my diet consist of?

For breakfast

1. About 70 grams of butter.
2. A small piece of bread: 2 x 4 centimetres.
3. A matzo of 30 x 30 cm
4. A 1/8 litre of cream
5. An Egg
6. Vitamins
7. May be there was more but I don’t remember.

I had to eat the butter with a lot of water.

For lunch I had meat and vegetables every day. The evening meal was the same as breakfast with one exception: Instead of the cream I was given 50 grams of peanuts.

The diet did have some side effects:

• I was small for my age.
• My curly hair went straight.
• I ended up with a lot of acne on my back.

                                             This a photo of me at that time.

Did it all end well? Not quite, I spent two and a half years at the institution and when the insurance company heard what the diet had done, they decided to stop paying for my stay at Heemstede. My parents were worried that I would become ill again if I returned home. But thanks to the government a solution was found: I was allowed to stay on because of a concern related to food poisoning.

During my stay at Heemstede I did not see my parents much. My father came every month but my mother only ever visited me once. I still had a good and busy time there. I did my schooling, here is a photo of my class:
 

I am the one in the middle with my arms around my knees. This photo was take during my heavy diet period and I still had curly hair. To keep busy I took part in many activities, I was in the scouts, I sang in a choir and I was an actor for a play given to our parents and the workers of the institution. The play was called: Jaap Holm and his friends, a play made from a Dutch book for boys. You can see me acting below:

 

 

This picture shows me standing on the right. My diet went from 4:1 to 3: 1 to 2:1 and my hair turned curly again. The other boys were also from the Institution in Heemstede.

I thank the Dutch government for changing the regulations: this allowed me to stay at Heemstede and ultimately cured my childhood epilepsy. The question which I am sure you are keen on finding out about is, what effect did it have on the rest of my life?
 
Well, after my stay at the institution Meer en Bosch in Heemstede I went to high school.  I was now getting a normal Dutch education like every other young man in Holland, all be it a bit late. I start at high school when I was 14 years old: all the other pupils of my class were 12 years old. It was a difficult start, but I succeeded and from high school and went on to university and got my diplomas to become a teacher and director of a basic school. I continued my studies after getting married and finished my university degree. I had a good position and I was working with success.

Then in about 1992 I was working in a very stressful situation and I experienced a `grand mal` attack whilst driving. I was prescribed Diophantine which cured the problem and after 5 years my neurologist decided to stop this medication. Unfortunately I experienced another attack so the decision was to continue this medication for the rest of my life.

During the last 15 years I have had about 5 attacks, two very heavy. I now hope that the epilepsy is under control again. 

Some time ago I wrote my second book called “Broken Head”, it had nothing to do with my epilepsy. It was later on that I really understood the underlying meaning. During my life time I have experienced a number of problems but I was always sure I would  be healthy again, or in my case I’d be able to function again. I now have spondylitis ankylopoetica and have to travel to a special spa in the Czech Republic. Here I can stop the pain without having to use any medication.

My final point is, I have always managed to I solved my problems and I believe that there is a solution for everyone out there for a healthy life.

The Netherlands, Houten, 13 October 2008

* This is the ration of Fat to Protein and Carbohydrate.