Re: a little upset -felbatol

[Guest guest]

My son has been on Felbatol since January of this past year. He

has been on the keto diet for 3 years and we took him off in December due to

control for 2 yrs and EEG clean for 2 years and they came back full force

within 3 weeks. So, we decided to try Felbatol along with an Atkins type diet.

We had really good control with the combination up until this past July

when he had a obstructed bowel and now we are battling leaky gut and

constipation and not good seizure control. has head drops or nods

where his

eyes close and his head bobs down a little bit. EEG shows a generalized

myoclonic type epilepsy. Prior to the diet he was having 150-200 a day and was

diagnosed with Lennox Gasteau. We have seen a few little ones in the

mornings since the constipation issues but the Felbatol and diet together have

given

him a huge reduction and some total control when helath is good.

It did cause insomnia and severe decrease in appetite therefor, he gets one

dose of 600 mg in the am. It is a sub therapeutic dose but has worked. If

we don;t get control back soon, we may have to add a later dose and give him

something for sleep to off set the insomnia.

Good luck. We have not had any problems with the anemia but ou have to

watch it closely.

Hang in there. It is a long frustrating disease that we all are delaing

with.