Joni’s Story
Hello parents,At first, forgive me for my bad English writing. I’d like to introduce myself and my son to the group members.
My name is Soma, a 37 year old university teacher in communications and mother of three fabulous kids: Joni (male, 7 years, born 16-06-1999) and Abel (male) and Lotte (female), healthy twins of 3 years old now. My husband has quit his job and looks after our children at home while I’m working.
I’m also one of the moderators of a succesful Dutch forum (www.sos-mies.nl) for parents with a child who have an epilepsy syndrome or a difficult to control, epilepsy. Many of our children are on the diet, or have been on it, or will be on it soon. The diet is gaining popularity in Holland, I’m glad to say so.
Joni is handicapped due to brain damage, caused by non-ketonic hypoglycaemia in the first few weeks after he was born. Ironically he didn’t produce ketones during fasting as an infant, within few hours after drinking his blood sugar level was too low, dangerously low, and they found out he couldn’t burn fats. He was examined on all kinds of (metabolic) diseases but there was never found an explanation. However, the repeating hypoglycaemia caused brain damage. He clearly has grown over the previous hypoglycaemia, which was proved since he is successfully on the ketogenic diet (LCT). He started on the classic ketogenic diet (LCT) in June 2004 in a Dutch epilepsy-clinic.
Joni appeared handicapped due to the brain damage, he has developed very slowly. He is mentally functioning as a 1-year old now. He can’t walk, stand or crawl and is depending on a wheelchair and stroller. He is able to sit up by himself and can roll over and back. He can’t talk but understands simple, basic language and he knows very well how to communicate with expression and sounds. Over all he is a very happy and social boy in spite of his serious handicaps.
The epilepsy started when he was 1,5 years old with myoclonic seizures after waking up out of sleep and absences seizures during the day. First choice AED (valporate/Depakote & Orfiril) didn’t work and combination therapy neither; in 4 years we’ve tried many combinations:(I’ll first name the generectic name because brand names are different in Dutch sometimes) topiramate/Topamax, ethosuximide/Ethymal & Zarontin, clobazam/Frisium, clobazepam/Rivotril, lamotrigine/Lamictal, levetracitam/Keppra, Phenobarbital/Luminal, felbamate/Taloxa or Felbatol.) We’ve tried 10 AED in different combinations but nothing helped a bit, except clobazam for a few weeks, until he got used to it, seizures got back and the dose was increased and so on. We realized he is really resistant to AED; he only suffered a lot of different side effects.
When he was 3 years old the EEG showed a typical pattern for Lennox Gastaut syndrome, in this period he also developed complex partial, atonic and tonic-clonic seizures. The EEG showed 90-99% epileptic activity al the time. We saw most seizures during the night in the beginning, later he got many seizures during the day too.
In the two years that followed after the LGS diagnosis, we lost contact with our boy and saw an unhappy, always dozy, non-responding little boy that suffered from many, many seizures a day and didn’t develop anymore.
We decided to try the ketogenic diet when Joni was almost five years old. In the first week we saw a clear difference already: the seizures became less frequent and were milder. After fine-tuning for three months we saw hardly any seizures anymore. In the mean time we stopped giving him 2 out of 3 AED (we weaned etosuximide because the Zarontin contained wrong sweeteners and Topamax because of the risk kidney stones.) He remained on 10 mg clobazam.
After 6 months on the diet the EEG showed only a mild epileptic activity; less than 30% instead of 90-99%, that was a big surprise for the neurologist who called this a remarkable success. The LGS-pattern disappeared! So he’s not 100% epilepsy-free but we see hardly any seizures anymore and the better EEG makes his prognosis for development so much better.
In 6 months we’ve slowly reduced the last 10 mg clobazam by weaning 0.5 mg per 3 weeks. The weans were difficult, we saw seizures (big TC’s) breaking through the diet each time we reduced 0,5 mg but after one week he got stable. We waited two more weeks before weaning 0,5 mg again and saw the pattern over and over again. But since February 2006 Joni is free of clobazam and all AED!
He only gets his supplements and vitamins, carnitine, melatonin for sleeping and a reflux-medicine to prevent him from vomiting.
Our son was lucky and came back out of the hell he was in. He is happy and active again, makes good contact and is developing better than we ever hoped before (but he stays seriously handicapped, that is a fact.) We rarely see any seizures anymore. Only when he is ill, when the food wasn’t right or when he refuses to eat his whole meal, we see break-through seizures, big ones. The ketosis is most times too low in these cases. As soon as he gets better or ketosis is 3-4+ again, he stabilizes. We do test ketosis in the blood. Urine checks were not reliable for Joni.
Knowing what I know now about the diet and AED, I regret so much that we’ve waited so long to try the diet. We had heard many negative stories about how difficult the diet is for kids and parents and we were convinced this diet could not work for our boy. Now I wish we had tried it after the second or third AED didn’t help. No doctor told us by then that the chances for the diet are better compared to trying more and more AED. We could have prevented so many seizures and side-effects of AED and he possibly would have had a better development too when seizures had been controlled earlier.