New to Group

August 7, 2003

I think, based on the experiences of many others, that being off of

those meds and on the diet will have a huge improvement. Our goal once

on the diet has been to get rid of the meds, and thereby avoid all the

enhanced side-effects and withdrawal effects of those meds. It is a

terrible cycle. My daughter is also on felbatol and the diet. We are

weaning felbatol slowly... And she is having less than 5 drops a day

(her only seizure type). See what everyone else suggests, but I would

say go for it.

Love and Welcome,

Ann

New to group

I am new to the group, here goes the story, I'll try to keep it short:

My son is 6 years old he was dig. w/ IS when he was 18mths. When he

was first diagnosed they did a B6 drip for several hours and

concluded that it was not a B6 deficiency. He still has clusters of

seizures several times daily. We have tried the following

drugs/therapies: ACTH, Vigabatrin, Prednisone, Topamax, Lamictal,

Keppra, Depakote, Zonegran, Zarontin, Diamox, Topamax (again), and he

is currently taking Felbatol & Dilantin and still has clusters daily.

We also tried the Ketogenic diet, he has the VNS implant (which we've

been throughmost all setting and now he is on rapid cycle), has had a

course of IVIG infusions and was in a study on Transcranial Magnetic

Stimulation (TMS).

The doctor recently told us to try to think of which drugs worked

best and we can again recycle them! The only one we thought was worth

recycling was topamax and we did and it did not have the same effect

anyway.

There is no focus for his seizures and his EEG is constantly active,

and his MRI is normal.

We did try the ketogenic diet two years ago for almost four months

and there was a change in his behavior (for the better) and his

seizures did decrease a little but he was on a high dose of depakote

and lamictal, we did not lower either drug at all. He was always

crying for food. On felbatol he has NO appetite so I thought this

might make it easier for him. My question is, if we can recycle

drugs can we recycle the ketogenic diet? Has anyone gone off of it

and then back on? Have the results been the same, worse, better? Any

suggestions?

Thanks, Suzanne

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August 24, 2003

Pam- I have a couple of personal opinions for you.

First, you should be seeing your neurologist more frequently, especially because

things are not under control. My daughter has had hundreds of seizures everday

for almost 2 years and we see our neuro every 2 weeks. (we just switched to him

in Feb 03). Don't be afraid to get a second opinion.

Secondly, I feel that it is very dangeroud to just stop the meds at once.

Eventhough he has only been on them for 12 days, the levels are probably built

up and still need to be weaned over a week or to at least. We have stopped one

or two meds abruptly, but that was only because there was a problem.

Thirdlt, my daughter has different types of seizures than your son, but I will

say (and i'm not trying to scare you) that the first month or so of her

seizures weren't nad, but as each day passed she got worse and worse. Do your

research and decide what you want to do (It;s your child) If your neuro won't do

the diet, changed dr's.

Lastly, we start the diet on Sept. 9th. We passed up he opportunity to start 8

months ago because it seemed so difficult and we figured we would try some more

meds. 8 meds later nothing has helped. Now I kick myself for not starting

sooner. Yes, you do have to try out different meds and combinations of meds, but

at some point you just have to say to yourself, ok what are our other options.

Best of luck

Keri

New to Group

Hello,

I am new to this group. I am also new to seizure disorders. I am

getting a crash course tho. My 7yo son, , began having seizures

(probably absence or atypical abs) about 4 weeks ago. He began with

dozens a day and progressed to hundreds/day by 2 weeks ago week. At that

point, 12 days ago, he was put on depakote, 125mg 3x/day. He is still

having about 4-8 seizures an hour. I don't know if he has them while

sleeping. His brief eeg, done after about 4 days on the depakote, showed

lots of abnormal brain waves, generalized with a lot of activity in the

left side according to the eeg tech. I am not sure what all that means

and I will be ordering a copy of the eeg reading when it is ready. I am

waiting for the MRI result, but from what I understand it will show us

nothing.

So, I am trying to figure out what we are going to do with . I am

very interested in the keto diet, but haven't talked to his neurologist

about it yet. I've only seen him once so far. We have an appointment

with him again in 5 weeks which seems a lifetime away. I went to a

epilepsy support group for parents and learned a lot, but they were

discouraging about the ketogenic diet.

I have a million questions........

I am considering taking off the depakote now, then trying the diet

(or a diet). Should I call the neuro to discuss it with him, or should

I just take him off? (I figure I should discuss it with him, but I also

figure I don't want a scolding) After being on it for about 12 days, does

he need to wean off it already? I thought it would be best to be off

meds before starting the diet. How damaging are absence type seizures if

they are not controlled?

Can the diet really be a first resort instead of last as I have been

told? I am getting the sense that with seizures, a person just goes from

med to med. What you would do if you were at the very beginning of a

seizure disorder?

I probably don't even know what questions to ask. I know this group has

a wealth of information!

tia,

Pam, mother to 10, grandmother to 4

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August 24, 2003