So yesterday's EEG was bad. Much worse than the one four weeks ago. And just as bad or almost as bad as the one Kalle had at the beginning of diet, in november. What a disappointment, what a setback. Another one. It's not a surprise because we saw so much more seizures during the last couple of weeks. But we hoped that at least the EEG would be as 'good' as the last one.
We also talked to the keto-team today: the two dietitians and the epilepsy nurse. What might be the reason the diet worked in the beginning and kind of stopped working after 2-3 months?
- Sometimes it just happens.
- Kalle's ketosis is realtively high, maybe slightly too high. That might cause more seizures. His nutrition needs some adjustment.
- One of Kalle's meds (Depakine, the dutch brand name of sodium valproate) might have a bad influence on the diet. There is no official proof for that, except lots of stories of keto-kid parents: They experienced that the diet worked during the first weeks, but then the seizures came back. Lowering (instead of increasing) the doses of sodium valproate helped making the diet work again. But it's not clinically proven, so we hope to convince the neurologist that it might be worth a try. The alternatives sound worse: another med, increase the doses....no thanks.
At least we decided to continue the diet for maybe another three months.
To be continued...