New to group

[Guest guest]

Hi,

I just joined this group and thought I should introduce myself.

My 7 year old daughter is currently on the waiting list for the keto program at

Hopkins (they tell me it will likely be until January), and I am hoping to

prepare myself as well as possible by learning from the group. Her tentative

diagnosis is idiopathic atypical absence seizures or juvenile absence. My

daughter has been on Zarontin, Depakote and Topamax. Her seizures were much

worse on all three drugs in terms of frequency, duration, and seizure type. She

also experienced other side effects such as excessive weight gain, dizziness,

sadness, and agitiation. While she was taking the drugs, I felt that my

daughter had completely disappeared. She is not taking any medications at the

moment. I am giving her various supplements. Eating junk food, sugar or a

great deal of carbohydrates seems to be a seizure trigger for her in my opinion.

I believe strongly that a dietary approach will likely help her significantly.

I am wondering if anyone who has done the program at Hopkins would be willing to

provide more detailed info about what " it's really like " , especially during the

first week of hospitalization. This could be off-group if you prefer, since

probably not everyone is interested in the logistical specifics of Hopkins.

On a separate note, does anyone have any experience with the Atkins Diet for

seizure control? I know that they are in the early stages of research on this,

but I would be curious to hear other's opinions on this since this was something

that was offered to us as a possible option for my daughter.

Thanks for your input.

Re: Heavy cream

Bill,

Lately, the only thing we could think of was that about the same time we saw

an increase in seizures was the time we changed creams. We have used

thesame brand for years and have been fine. All of the sudden, these

seizures

started happening daily and we thought it might be the probiotics or the

cream.

We stopped the probiotics and the seizures have slowed down but not

completely. Now, I'm going back to the old cream. All of this has happened

since the

constipation issues in July. We just can't get him back on track. Its

sooooooooo frustrating. You would think after 3 years on this diet, the fine

tuning would be over. Not so.

Thanks for your help