Re: Re: Keppra Wean Questions- -ne

[Guest guest]

Hi- we are thrilled, of course! Each month it just gets further & further away

from our time of seizures! Soon after we started the diet we began a slow wean

of Keppra. So, when we were finally weaning off, I think he was on 1/2 pill in

the morning & 1/2 pill at night. So, we did 1/4 pill morning, 1/2 pill at night

for 1st 2 weeks. Then 1/4 pill in morning and 1/4 pill at night for 2 weeks.

Then no pill in morning & 1/4 pill at night for about 6 days (that's when the

prescription ran out and we weren't about to go buy more!!)- doctor ok'ed this

and Noah was fine!!

Noah's development is outstanding- right now he is doing a jigsaw puzzle (24

pieces, mind you) but still, that is great for him since about 9 months ago he

was in a vegetative state in his highchair all day long. He has Doose Syndrome

or Myoclonic-Astatic Epilepsy and at his worst was having seizures constantly

all day long. But, as soon as we started the diet, his speech, memory, etc took

off and now he is on track to being advanced! His neuro continues to be amazed-

as do we. He does great around other food that he can't have- we have a 2 yr old

that eats everything and Noah loves to feed him. We were at a party over the

weekend and he was adoring these fancy sprinkled cookies. He knew he couldn't

eat it, but he just wanted to hold it and maybe feed . I let him hold it-

and there was no way he was going to eat it (I had my eye on him and he knows it

isn't allowed.) Someone there told him to eat his cookie and he said, No- I

can't have it. They said, sure you can! And he said-

no I can't. Everyone there knows he's on the diet, but it's easy to forget or

not understand. I am proud that he knows and acts upon it. This also shows

development... most adults don't even have that restraint with food!!!

Our neuro plans to start weaning the diet a little after 1 year (beginning next

summer) and he should be off the diet before starting pre-school.

Mom to Noah- age 3, med-free, & seizure-free on the keto diet

smclague claguelaw@...> wrote:

--how terrific--you must be thrilled! What was Noah's

dosage of Keppra and do you recall how much you weaned at a time.

Because is only on a 1/2 pill (125 mg), I'm wondering if we

should just pull it altogether in a couple weeks when we're done

monitoring for seizures since stopping depakote. Did you go slower

toward the end of the wean (ie. smaller doses removed at a time?)

How is Noah's development coming along? is doing incredibly

well--the diet has helped with her sensory processing issues as well

as her speech. She even became potty trained (still pullups at nite-

-I can live with that) within a week or two of starting the diet.

It's amazing what eliminating the " static " (ie. subclinical seizure

activity) does for a person. She started preschool this fall and is

sticking to the diet without too many problems (ie. she isn't asking

for other kids' food). So we remain extremely hopeful for her.

I hope your seeing many developmental strides for Noah as well!

Thanks for your message!

ne

>

> Hi all,

>

> Been monitoring the posts for awhile now when I can snatch a

> moment. Seems like anytime I post it's always with more questions

> so I just wanted to first say: To all that are experiencing great

> success with the diet both with seizure control and developmental

> strides for your kids--keep those wonderful stories coming! To

all

> those still working so hard to gain/keep seizure control for your

> kids--keep up the hard work, your kids are so worth the effort!

>

> Here's the background to the question:

> As for our daughter, (age 4 and 1st seizure on 12-6-04 and

> keto kid since 7-19-04 and seizure free since 7-1-04) we are still

> so excited to say that continues to do extremely well on the

> diet. started the diet on 2 meds--Depakote (1125mg/day) and

> Keppra (125mg/day). Keppra we had started just 2 weeks before the

> diet as our neuro was out of the country and had her longest

> T/C (7 minutes). As of yesterday (10-4-04) took her last

> depakote pill (pending a 2 week monitoring period); we had been

> lowering 125mg per week beginning on Day 2 of diet initiation and

> then for the last 375mg (ie last 3 pills) we weaned 125 mg per two

> week period (1 week to lower blood levels and 1 week for

> observation). Now we have the 125mg of Keppra to wean. Just

spoke

> with our neuro today who wants us to wait to wean the Keppra until

> our appointment and EEG on November 19th (ie 6 weeks). I of

course

> want to start the wean in about 2 weeks after we make sure she

> maintains seizure control with no depakote. The debate centers on

> whether her 2 weeks of being seizure free prior to diet initiation

> on July 19th was due to the addition of the 125 mg of keppra or

> whether it was because we had begun in earnest changing 's

diet

> to include only those foods on the diet (although not limiting her

> portions).

>

>

> Any advice, information on how your kids faired weaning off

keppra,

> or questions to consider given this brief overview would be very

> much appreciated.

>

> Thanks again!!

>

> ne and Mike

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

last resort! "

>

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