Callum’s story

“Callum is our 19 year old son who has Ring 20 Chromosome disorder. Callum went on the modified KD just before his 12th birthday. He did it for 2 years and 2 months. After 6 months he became drug free and seizure free. This was amazing!”

We noticed his seizures started coming back gradually after 2 years, Callum was now 16. There was the odd one or two a week, then by the time he was 17 he was having several partial absence seizures lasting 5 to 20 minutes daily.

We saw Dr Fuller the consultant at Gloucester Royal Hospital who suggested going back on KD diet.

I said to Callum it was his choice and I would help him do the diet if he was willing. He replied wanting to do the diet and said he liked being on it because it made his head feel clean! We are under Birmingham Childrens Hospital for the diet.

We did Low GI diet and high fats. This really helped reduce seizures. We had foods that were 50 or under GI.

Callum did this for a year and a half then gradually came off it. Straight away he had more seizures and after 8 weeks of daily seizures we went back onto KD.

Callum is still on the diet, now 19 years 5 months old. He has on average one seizure a day lasting from 5 to 20 mins. This still is much better than if he was off the diet. He is a lot more alert. At the moment he is on 3g Carbohydrate per meal and 60g fats. He takes Acetazolaminde 250g twice a day.

The diet has a lot more supplements to offer now than 7 years ago.

Vitaflo, Nutricia and Ketocare supply Callum’s diet supplements.

We test his blood twice sometimes 3 times a day for blood sugars and ketones. Callum’s ketones are usually around the 2 level when we test him.

He is really good doing the diet. He even cooks food for us and he can’t even eat it. I’m sure I wouldn’t be as disciplined as he is!

It amazes me how food can do this and as we know with R20 does not respond to AED’s.

By Dawn Gray (Callum’s mum).

Ring chromosome 20 epilepsy syndrome, also known as r(20) syndrome, is a rare chromosomal anomaly resulting from a break on each arm of chromosome 20 resulting in ring formation. In r(20) syndrome, the breakpoint of most patients is in the p13q13.33 region of chromosome 20.

Two distinct forms are recognized, mosaic and non-mosaic ring chromosome 20 epilepsy syndrome. This syndrome is characterized by medically intractable  epilepsy, nocturnal subtle seizures, behavioral problems and mild mental impairment. Unlike other chromosomal aberrations, dysmorphism (major or minor
congenital malformation) is rarely reported.

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