Re: Re: vomiting, won't keep food down, no meds down in over 48 hours

[Guest guest]

I was under the impression that it took a lot longer than 72 hours for the med

level to drop......at least a week, possibly two......we have been decreasing

depakote too and we have learned through past experience to go slow. Rebekah is

very sensitive to any changes.....it's taken us since last Fall to get 'close'

to weaning one capsule.....she still has another two to go......just our

experience.......

LaVerna, mom to Rebekah...wishing we could go faster.....

Re: vomiting, won't keep food down, no meds down in over

48 hours

We did the broth and cracker thing. He didn't like the broth and

liked the crackers. LOL No big surprise there. I am hoping things

will be better tomorrow.

Still no meds and no seizures. Working on 72 hours now. We are on

less than 2 pills a day of the 125mg Depakote Sprinkles, we were on

62.5mg 3x a day. Our pedi expects that they level we drew today

will come back less than 10 if not zero point something.

Many of you all mentioned getting the levels back up and weaning. I

was wondering what the rational would be to do that? If any big

events were to happen from the drop it would have happened 3 days

out from any meds given??? I agree that the meds would be easier to

add back in if needed. That's our dream is to be med free and just

diet. I am hoping it will come true!

> My feeling-is to STOP the med

> If seizures return when he starts eating--fine-tune the diet

> The vomiting and sickness is actually showing you " starvation-

state " --which

> is what the Keto diet " mimics " --is keeping seizures to a minimum-

to 'null

>

> The Keto-soup is for when they are sick

> It was posted a short time back-I believe when Jake was sick--

> T. Lee posted it--

>

> " Emergency Soup Recipe " :

> 4 gms Granulated Bouillion

> Add 1 cup boiling water-older child & 2-4 saltine crackers

> OR 1/2 cup--younger child & 1-2 saltine crackers

>

> This adds salt & potassium in something warm with a small amount

of easily

> digested carbs

> When the child is getting nothing else they will stay in ketosis

> DO NOT use more than 2-3 meals consecutively

> This is similar to Pedialyte

>

> 1 Saltine = 2.5 gms CHO

> 2 Saltines = 5 gms CHO

> 6 Saltines = 15 gms CHO

>

> Hope this Helps

> Sandi

>

>

>

[Guest guest]

I was under the impression that it took a lot longer than 72 hours for the med

level to drop......at least a week, possibly two......we have been decreasing

depakote too and we have learned through past experience to go slow. Rebekah is

very sensitive to any changes.....it's taken us since last Fall to get 'close'

to weaning one capsule.....she still has another two to go......just our

experience.......

LaVerna, mom to Rebekah...wishing we could go faster.....

Re: vomiting, won't keep food down, no meds down in over

48 hours

We did the broth and cracker thing. He didn't like the broth and

liked the crackers. LOL No big surprise there. I am hoping things

will be better tomorrow.

Still no meds and no seizures. Working on 72 hours now. We are on

less than 2 pills a day of the 125mg Depakote Sprinkles, we were on

62.5mg 3x a day. Our pedi expects that they level we drew today

will come back less than 10 if not zero point something.

Many of you all mentioned getting the levels back up and weaning. I

was wondering what the rational would be to do that? If any big

events were to happen from the drop it would have happened 3 days

out from any meds given??? I agree that the meds would be easier to

add back in if needed. That's our dream is to be med free and just

diet. I am hoping it will come true!

> My feeling-is to STOP the med

> If seizures return when he starts eating--fine-tune the diet

> The vomiting and sickness is actually showing you " starvation-

state " --which

> is what the Keto diet " mimics " --is keeping seizures to a minimum-

to 'null

>

> The Keto-soup is for when they are sick

> It was posted a short time back-I believe when Jake was sick--

> T. Lee posted it--

>

> " Emergency Soup Recipe " :

> 4 gms Granulated Bouillion

> Add 1 cup boiling water-older child & 2-4 saltine crackers

> OR 1/2 cup--younger child & 1-2 saltine crackers

>

> This adds salt & potassium in something warm with a small amount

of easily

> digested carbs

> When the child is getting nothing else they will stay in ketosis

> DO NOT use more than 2-3 meals consecutively

> This is similar to Pedialyte

>

> 1 Saltine = 2.5 gms CHO

> 2 Saltines = 5 gms CHO

> 6 Saltines = 15 gms CHO

>

> Hope this Helps

> Sandi

>

>

>

[Guest guest]

We started the diet mainly to get Langan off of the AEDs also. More seizure

control was an added bonus. I was also of the opinion that there was no need to

go back on the meds when Langan was off of them for a VEEG, but went along with

our neuro when they insisted or would have refused to treat her. And, once we

started keto, I didn't understand why we needed to go so slow with weaning her

lamictal when the half-life was not that long. BUT my experience is similar to

those on this board. Although the levels would show that the lamictal had

leveled off in Langan after only a few days, we have seen the worst withdrawal

effects (seizures, insomnia, wild behavior, strange shivering) 10 days after

each reduction. You can set your watch by it. And that was only with small

reductions (12.5 mg each 14 days, starting at 75mg. Our weans have screeched to

a halt after the last one b/c we saw so much backlash- again, starting 10 days

after- that we are staying where we are until things level off and then going

slowly. I hate to think what would have happened if I had just stopped the

lamictal cold-turkey. I have heard of some kids stopping meds cold turkey and

being fine, but what I have seen from my daughter after these tiny reductions

has made me a believer in the need for a slow, careful wean. Just my two

cents....

, mom to Langan, 18 months old and keto kid since 11/03

Re: vomiting, won't keep food down, no meds down in over

48 hours

We did the broth and cracker thing. He didn't like the broth and

liked the crackers. LOL No big surprise there. I am hoping things

will be better tomorrow.

Still no meds and no seizures. Working on 72 hours now. We are on

less than 2 pills a day of the 125mg Depakote Sprinkles, we were on

62.5mg 3x a day. Our pedi expects that they level we drew today

will come back less than 10 if not zero point something.

Many of you all mentioned getting the levels back up and weaning. I

was wondering what the rational would be to do that? If any big

events were to happen from the drop it would have happened 3 days

out from any meds given??? I agree that the meds would be easier to

add back in if needed. That's our dream is to be med free and just

diet. I am hoping it will come true!

> My feeling-is to STOP the med

> If seizures return when he starts eating--fine-tune the diet

> The vomiting and sickness is actually showing you " starvation-

state " --which

> is what the Keto diet " mimics " --is keeping seizures to a minimum-

to 'null

>

> The Keto-soup is for when they are sick

> It was posted a short time back-I believe when Jake was sick--

> T. Lee posted it--

>

> " Emergency Soup Recipe " :

> 4 gms Granulated Bouillion

> Add 1 cup boiling water-older child & 2-4 saltine crackers

> OR 1/2 cup--younger child & 1-2 saltine crackers

>

> This adds salt & potassium in something warm with a small amount

of easily

> digested carbs

> When the child is getting nothing else they will stay in ketosis

> DO NOT use more than 2-3 meals consecutively

> This is similar to Pedialyte

>

> 1 Saltine = 2.5 gms CHO

> 2 Saltines = 5 gms CHO

> 6 Saltines = 15 gms CHO

>

> Hope this Helps

> Sandi

>

>

>

[Guest guest]

Good luck. Like I said, I have heard of kids having no problems with weaning.

I actually thought Langan was one of those kids, and so I kept reducing by the

same amount instead of tapering more as we got lower. I did learn from that,

though, to trust the people in this group who have been there. Also, FYI,

although I do think our neuros have lots of knowledge on this stuff, I don't

think they are as educated about the withdrawal problems as the parents here who

have lived with it. My neuro told me that lamictal didn't have any withdrawal

problems. Wrong....

I hope all goes well! No matter what, your child is lucky to have such a

wonderful and caring mom!

Re: vomiting, won't keep food down, no meds down in over

48 hours

This is helpful. This is what I was wondering about. Thank you. I

am suppose to hear what the doctor says in the morning and I will

mention this too. I will let you know what happens. Thanks for the

info!

> > My feeling-is to STOP the med

> > If seizures return when he starts eating--fine-tune the diet

> > The vomiting and sickness is actually showing you " starvation-

> state " --which

> > is what the Keto diet " mimics " --is keeping seizures to a

minimum-

> to 'null

> >

> > The Keto-soup is for when they are sick

> > It was posted a short time back-I believe when Jake was sick--

> > T. Lee posted it--

> >

> > " Emergency Soup Recipe " :

> > 4 gms Granulated Bouillion

> > Add 1 cup boiling water-older child & 2-4 saltine crackers

> > OR 1/2 cup--younger child & 1-2 saltine crackers

> >

> > This adds salt & potassium in something warm with a small

amount

> of easily

> > digested carbs

> > When the child is getting nothing else they will stay in

ketosis

> > DO NOT use more than 2-3 meals consecutively

> > This is similar to Pedialyte

> >

> > 1 Saltine = 2.5 gms CHO

> > 2 Saltines = 5 gms CHO

> > 6 Saltines = 15 gms CHO

> >

> > Hope this Helps

> > Sandi

> >

> >

> >

[Guest guest]

txmomwithkids wrote:

> Yes, I agree w/ the going slow thing. I understand the reasons for

> it. Our situation is somewhat different in that he has virtually no

> drug on board since the illness. I just curious what the rationale

> could be to restarting the med when it's gone and there are no

> seizures.

The rationale would be, no matter what the half life of depakote,

experience has shown withdrawl seizures commonly up to 10 days later and

with some kids the problems occur up to a month later.

Go ahead and do a quick wean and we will all be wishing you the best of

luck, for some kids it would likely work, for some it would be

difficult. But if you are feeling brave.........

Good luck

, 's mom