Re: Re: Depakote-withdrawl and neurontin Ariane

[Guest guest]

Ariane,

Thanks so much for all of your words of wisdom. I told my hubby tonight that

I was not going to start the neurontin until we get the antibiotic in his

system and see how he does with the withdraw. I think we'll give it a few days

or week until we drop again. Problem is, my hubby just wants this drug out of

him and wants to follow the neuro by the book. I'm with you on letting him get

back to himself before we drop again.

Thanks so much! It is so nice to know we're not crazy and others have been in

the same spot. Just curious. Dillon is not a keto diet kid anymore? and on

Tegretol? Whats going on with him??

[Guest guest]

Ariane,

Thanks so much for all of your words of wisdom. I told my hubby tonight that

I was not going to start the neurontin until we get the antibiotic in his

system and see how he does with the withdraw. I think we'll give it a few days

or week until we drop again. Problem is, my hubby just wants this drug out of

him and wants to follow the neuro by the book. I'm with you on letting him get

back to himself before we drop again.

Thanks so much! It is so nice to know we're not crazy and others have been in

the same spot. Just curious. Dillon is not a keto diet kid anymore? and on

Tegretol? Whats going on with him??

[Guest guest]

,

Thanks for the compliment....I rarely feel wise. Your post brought back lots

of memories!

We weaned the diet last June. We lost control the previous fall after the

depakote wean, got it back and lost control again last March. We struggled

until

June and finally added Tegretol and got control back. The diet just seemed

to stop working for Dillon. He got 14 months seizure free except for weaning

breakthrus. I think he is still better off for it. We did the diet thru

Hopkins with Dr. Freeman so I don't think we could have done it any better.

Hopkins

stats go something like 40% no change, 30%cured and 30% better. Dillon seems

to at least fall in the latter category. He has simple and complex partials.

I understand your husband wanting to just get rid of the drugs but as far as

has come you do not want to trigger any seizures. Dr. Freeman

wanted us to go slow with each drop and wait until he stabilized each time. He

told me many, many times, " never do more than one change at a time every two

weeks. Illness counts as a change as well.

will come around once all the depacrap is out of his body. It is

a good med for some kids but the weaning is the worst.

That's our story and I can't seem to remove myself from this list. I still

like to hear how the kids I have followed the last 3 years are doing.

Ariane

Dillon,7

[Guest guest]

,

Thanks for the compliment....I rarely feel wise. Your post brought back lots

of memories!

We weaned the diet last June. We lost control the previous fall after the

depakote wean, got it back and lost control again last March. We struggled

until

June and finally added Tegretol and got control back. The diet just seemed

to stop working for Dillon. He got 14 months seizure free except for weaning

breakthrus. I think he is still better off for it. We did the diet thru

Hopkins with Dr. Freeman so I don't think we could have done it any better.

Hopkins

stats go something like 40% no change, 30%cured and 30% better. Dillon seems

to at least fall in the latter category. He has simple and complex partials.

I understand your husband wanting to just get rid of the drugs but as far as

has come you do not want to trigger any seizures. Dr. Freeman

wanted us to go slow with each drop and wait until he stabilized each time. He

told me many, many times, " never do more than one change at a time every two

weeks. Illness counts as a change as well.

will come around once all the depacrap is out of his body. It is

a good med for some kids but the weaning is the worst.

That's our story and I can't seem to remove myself from this list. I still

like to hear how the kids I have followed the last 3 years are doing.

Ariane

Dillon,7

[Guest guest]

lloydandleslie@... wrote:

> Problem is, my hubby just wants this drug out of

> him and wants to follow the neuro by the book. I'm with you on

> letting him get

> back to himself before we drop again.

Remind hubby that neuro's plan will just substitue one AED (depakote)

for another (neurontin)

[Guest guest]

lloydandleslie@... wrote:

> Problem is, my hubby just wants this drug out of

> him and wants to follow the neuro by the book. I'm with you on

> letting him get

> back to himself before we drop again.

Remind hubby that neuro's plan will just substitue one AED (depakote)

for another (neurontin)

[Guest guest]

,

He doesn't want to do the neurontin, just off the drugs asap. I always knew

this depacrap was bad but when you watch your child go through withdrawl you

realize how really bad it must be for them. But, at the time we started it, it

was our only option.

Thanks

[Guest guest]

Dear Ariane,

I hear you. I can't imagine not being on this list to. Its been such a big

part of our journey and we all have either done keto, going to do keto or are

keto it seems. I remember a long time ago you gave me a great recipe for the PB

cookies. Those were a god send for 2 years.

Well, slept for 8 hours last night. Good old antibiotics seem to

be helping. He is still having some major behavioral issues. he thinks he

pretty much controls me. Its really frustrating. We'll probably start the wean

again once he's recovered. We only have 125 mg to go. I'm ready for it.

But, we'll go slow.

Glad to hear that Dillon is doing ok on the meds. Are there many side

effects??

Thanks for your help