seizure increase with lamictal decrease: our new plan

[Guest guest]

Thanks , , Jonna for your letters.

I have been posting some individual messages, but perhaps this is

not a good idea. First of all, my yahoo mail box fills with all

posted messages, so sometimes I miss your letters and then don't

write back. Also, I'm sure other families can learn from our

experiences, so it is probably better if I post messages to the

group, even if they are primarily meant for one person.

As I mentioned a few weeks ago, after good initial seizure control

on the diet, Ethan's seizures returned worse than ever. This

started as we were lowering his lamictal dose every week or two. I

got very discouraged, but thankfully I recieved some wonderful words

of encouragement from many people in this group, and I learned from

postings of people going through the same thing. ( I know we have

all had this experience and it is incredible!)

After visiting Ethan's doctor on Thursday, April 15 we have a new

plan. It is not to increase the lamictal, nor to add a new drug.

It is to do a rapid wean. We will decrease lamictal by 12.5 mg

every 4 - 7 days. We are armed with diastat and a nasalspray. The

Dr. suggests we try the nazal spray for prolonged seizures.

Ideally, I guess a controlled wean would be preferred. But we do

not have that. Ethan has already missed 3 weeks of school. Why

prolong things? The plan is to get off the meds sooner rather than

later, and so we will know sooner rather than later if the diet is

going to work. Ethan likes this plan, because he is hoping the diet

will not work and he can get back to his favorite foods and on with

his life. I like this plan, because I think it is going to work, so

he can get on with his life (and me with mine!)

THe dr. said that sometimes kids are hospitalized for an even

quicker wean. But Ethan's seizures are not hurting him. He makes a

funny throat noise for about 4-10 seconds during which time he can

sit or lie down, and then he becomes relaxed, unconscious and unable

to move for 2 - 20 minutes. They occur about every hour.

HOpefully this information, especially if it works, will help others

who have been very discouraged with worsening siezures on the diet.

And once again, I am amazed by the outpouring of love I see in the

posted messages. I have a hard time keeping track of everybody and

everything I read here, but I am touched by your experiences and

stories. I send my best wishes and prayers out to you all! I know

this is tough!

Gretchen