As a kid, I was eating mainly carbs and fats and lots of fruit, but very small amounts. I was a tearaway with ADHD so I was burning through energy like no tomorrow. As a result, I was a pretty lean kid and my dieticians expressed concern that while I was a tall child, I was pretty light.

As a result, I was put given Calogen supplements which I took in the form of a milkshake with a beautiful zero-protein fruit ice cream called Nectacream. While the Calogen suppliments had their desired effect (I went from a lean skinny lanky kid to a reasonably solid and well-padded youngster) the company that made Nectacream folded, and that was the end of that. It saddens me that Nectacream doesn’t exist today – I’m sure it would have made a killing as a PKU ice-cream if it had gotten the global exp

osure the internet may have been able to afford it. Rest in cold, creamy peace, my long-lost friend.

Anyway, I was around 73 kilos going into college and struggling with my diet. I was taking my Aminogran supplement less and less because the morning doses made my breath smell horrible and I quickly spun out of the habit. In a bid to teach me some responsibility, my mother made me make it for myself. It backfired and I just stopped.

So I went off diet for a while – approximately five years. During that time I found college extremely difficult, and my life was somewhat turbulent. Needless to say, I made it through college and into university. My first year was typical – wild parties, lots of alcohol and lots of bar food – I developed a ‘healthy’ taste for garlic bread and fries, and spent many a sunny afternoon with my textbooks, beer and snack food. After a fun season during my final year of college, I went back to rugby and played in an Under 85 kilo weight grade. Due to my lifestyle and my regular dinner (pork crackling + mash potato + oven fries) I put on a lot of weight, and soon found myself weighing out of my games. After some problems with my then on-again off-again girlfriend and being forced to watch most of my team’s game from the sideline, I became pretty down. The fact I was not getting anywhere near what my body needed in terms of nutrition was no doubt a contributing factor.

Things culminated when a series of high blood test levels and my regular appointment at our national metabolic clinic saw me faced with the very real possibility that I was doing myself serious damage, and my B12 levels were a cause for concern. I knew I had to take my Amingran more seriously, but I could not get myself into the habit of making it. Thankfully, I was introduced to Easiphen, which our national pharmalogical body was contemplating funding.

In the four years that have followed, I have gone from being disorganised, irresponsible, clueless, incapable and dangerously incompetent with my diet to having a really good handle on it. My extra weight, which was putting me at risk of a series of other problems such as high cholesterol and diabetes is now firmly under control. I have regained a svelter figure through an aggressive low-cal diet with rigid Easiphen intake and have re-registered for the Under 85 team I had to effectively walk away from in 2005. I’ve gone from 103 kilos to around 81kgs, and there’s more to come off. I’m also trying to build some muscle mass, although the low protein diet is proving to be a bit of a stumbling block in this regard. If anyone knows of any good suppliments for this purpose, please message me! I love to cook and while I am getting very good at making breads and pizzas, I also enjoy some treats like popcorn in grapeseed oil (absolutely beautiful!).

I’m proud to have PKU. It’s no longer a stumbling bloc, it’s something that I know know a lot about and have read many things on. Understanding my condition has helped me take care of myself and given me something to be proud of.

I’m sorry for how long this is, but there is a silver lining to going back on the diet. If you’re on it now as a teen, for the love of all things awesome, stay on it! Learn to cook for yourself using things like LoProfin and discover the small wonderful things about your condition that other people don’t get to experience. Most other people will rarely smell bread fresh out of an oven – PKU lets you do that all the time! You can also make scones, pizzas and all sorts of wonderful goodies with relative impunity! I love the taste of my baking, I look forward to mucking around with recipes and it’s pretty much the most rewarding skill I’ve ever learned. And there’s nothing wrong with learning to cook – I’m a 22 year old rugby-playing New Zealand university student, and I consider myself to be every bit as rugged and articulate as the next Tom, Dick and Harry.

While I was lucky to have a seemingly mild case of PKU and to not have done too much damage during my more care-free years, I can assure you that life with PKU is far more enlightening and interesting – and ultimately more rewarding – if you have tale the time to understand the science behind your condition, how it works, what you can eat and how it can affect how you live your life.

Best Wishes

Dan

Ms. Caitriona Hensey, Senior Dietitian Crumlin, provided an informative overview on the points to consider when starting a patient on a ketogenic tube feed. Attendees were also introduced to the new ketocalculator available to healthcare professionals for designing new recipes and using current recipes depending on the ketogenic diet ratio (http://blog.nutricia.com/myketocal/). Everyone then got a chance to try out some of the new ketocal recipes including pizzas, tartlets, omelettes and smoothies. The main comment about these was that they tasted great and would provide great variety for patients on the ketogenic diet.

If you would like any further information on Ketocal please contact Nutricia on 0151 230 5242

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.

At this meeting we were lucky enough to meet Mr Brugt Warnar. Brugt followed the Ketogenic Diet from 1953-1957.

It all started for Brugt when he was 6 years old. After a childhood accident triggered a form of epilepsy in him, his parents took him to a doctor in Utrecht, Holland. The doctor informed his worried parents that he was “sorry” and “there was nothing we can do, your son will be like this for the rest of his life”. This was a devastating blow for Brugt’s parents but his mother did not give up hope. After much searching and researching, she discovered a centre just outside Amsterdam in the Haarlem district that specialized in paediatric epilepsy. Brugt was 9 years old when he entered the centre and was put on the Ketogenic Diet, which back then was called the “Fat Diet”.

The results were almost instantaneous, Brugt’s seizures went from nearly 20 an hour to virtually none! The biggest difference could be felt by Brugt himself as he said he could physically feel himself “getting better” and was no longer so emotional and aggressive. After 9 months of residential care at the centre, he left but continued on the diet for a further 3 years. At the age of 14 he came off the diet and hasn’t looked back since. He went on to university, got married and had two children.

As Brugt says himself, “It’s so important to find methods without medication, food gives you more control”

Follow the link to watch the video in full

Mr Warnar

The Ketogenic Diet – The 1950’s & Now

The first scientific report on fasting as a treatment of epilepsy was in France by Guelpa and Marie in 1910 who reported that seizures stopped during absolute fasting. Later on, other investigators observed cessation of seizures and improvement in mental activity during starvation . These results prompted the reproduction of ketosis and acidosis by means of a high fat -low carbohydrate diet in 1921 by Wilder at the Mayo Clinic who was trying to prolong the state of ketosis in diabetics.

Dr John M. Freeman reports that almost concurrently at the Johns Hopkins Department of Paediatrics, Howland and Gamble observed that “prayer and a water diet which involved starvation for three to four weeks” improved the seizures of the nephew of a professor of paediatrics. They decided to use the diet because prayer alone was ineffective. And so the ketogenic diet was born. Other investigators like Drs Lennox and Cobb In Harvard University started investigating the ketogenic diet concurrently.

The Johns Hopkins version of the diet was found to be best tolerated in a study that compared it with the use of medium-chain triglyceride (MCT) oil in 1989.

By the 1960’s with the introduction of other anticonvulsants, the ketogenic diet became gradually more of a curiosity. The general feeling amongst neurologists was that it was ineffective.

By the end of the 80’s and beginning of the 90’s the interest for the diet was revived by the studies of Dr Freeman who found by 1992 that the diet was followed by complete seizure control in 30 percent of children with uncontrollable seizures, and that an additional 38 percent showed marked improvement

One of the children treated successfully with the diet by the Johns Hopkins team was Charlie Abrahams. His parents in response have created the Charlie Foundation which has given widespread national publicity to the diet.

Find out how patients, parents and carers manage whilst living with the related conditions.