Depakote wean

[Guest guest]

go real slow with it. We were (until our last bout of the commit vomit)

going at it about 20-30 mg a week, with my husband weighing out each pill on

the scale. Anything fast can be very very ugly.

mother of jackie

[Guest guest]

Laurie,

I suspect (and this is just my guess) the ratio is causing ketones to be too

high and perhaps that's why he's " out of it " . I know being too ketoic can make

a child feel horrible. I would be tempted to drop more than .2...I'd go to

3.0:1. When we decreased depakote we were at 3:1 and the only difference we saw

were seizures for about a week after the drop and then they would taper off. We

did it slowly, 1/2 a capsule at a time, about every 2 weeks or more. She didn't

seem " out of it " as you described. You could offer the child a small amount of

apple juice or something sugary to help with high ketones...see if that makes

him feel better. I think most here report that while decreasing medication you

tend to see a pattern of increased seizure right after the drop and then the

slow down. Look back and see if what he's doing now is part of a pattern

experienced after previous drops.

Good Luck. None of this is easy. We still have one capsule of depakote on

board at night that I just can't drop even though I'm sure it's not doing

anything for her. Seems like every time I don't give it to her she has a

seizure so I just leave it alone. I don't want to rock the boat right now.

in KS

[Guest guest]

Laurie,

Yes, they can do an evaluation to check him for reflux. Call your neuro.... or

whoever is supervising the diet with you (dietician or whatever)...... and let

them know right away. Reflux is sooooo common on the Keto diet (from all the

fat) that I'd be shocked if they did not immediately recognize reflux just based

on his symptoms. The belching would be yet another clue, I would think. Does he

ever seem to be in pain.... or uncomfortable after eating? Does he ever refuse

to eat or drink (especially the cream)? They might just prescribe a reflux med

for a trial run....... although they can do more extensive testing (more

intrusive though). Don't let them even bother with Zantac........ it's a waste

of time for most kids. Our clinic ends up putting almost every kid on Prilosec.

We found adding a supplement of digestive enzymes to be very helpful, too.......

that and lowering the ratio (hence less fat to deal with) were very helpful.

Patti

Re: depakote wean

Patti,

The smell seems to be more in his perspiration but also his breath. He does

have a little belching (which is new) and a lot of thick saliva.

Is there a way to test for reflux and other than lowering the ratio, what

should we do?

Thanks,

Laurie (mom to , 10, stroke at age 4, vns, kgd as of 11/11/02)