Re: Wish Us Luck!!!/Gretchen

[Guest guest]

Gretchen,

Thanks so much for the support. I hope you are right and things go

well and that the wean is not too bumpy. Everything crossed here

about that!

Langan's seizures pre-diet varied in frequency, from 1 every 3 days

to 1 every 10 days to, on 2 meds, 34 days apart once. Except prior

to being medicated, she has only had one day with 2 seizures in her

life. BUT before the meds she was having up to 18 seizures a day.

Which is part of my reason for being so scared....

We'll see how things go and take it from there. We have a video on

the VNS and will see if it comes to that, but I am not sure if we

would go that route if the seizures are once a week or so. I just

don't know. I am trying to take it one day at a time and see what

this wean brings.

Thanks again for everything! I'll be sticking around and will keep

everyone posted!

> > Hello all. As most of you know, we have been s-l-o-w-l-y weaning

> > Langan from keto because of her persistent acidosis issues. We

> were

> > at a 3:1 ratio for quite a while and moved down to 2:1 last

> > Saturday. When we lowered, our neuro agreed to let us stay at a

> very

> > small dose of trileptal (75 mg 2X a day) to see what happened,

> > instead of increasing with the diet change. We saw a seizure the

> > first night and one 3 days later and then they started tapering

> off.

> > Strangely, though, Langan had low ketones when we first dropped

> and

> > then they jumped to large by the middle of the week. And,

> > unfortunately, even at 2:1 her bicarbs were 16, which is just not

> an

> > acceptable level given her history. Soooo the neuro and

dietician

> > have given us an 8 day weaning schedule. And I am TERRIFIED!!!

> What

> > am I going to do without the scale???? If we saw seizures with

> each

> > change when we were moving at a snail's pace, how bad is it going

> to

> > be at this pace? I totally agree with the neuro that it needs to

> be

> > done so we can see what is going on metabolically with Langan,

but

> at

> > the same time I am so scared. We're staying where we are

medicine-

> > wise to see what happens and hopefully we can weather the storm

> and

> > stay at a low dose. PLEASE wish us luck. We'll keep everyone

> > posted, and I'll still be around this wonderful keto family, but

I

> am

> > just sooo scared to take this step.

> >

> > Thanks!

> >

> > , mom to Langan, 2 yrs old and keto kid since 11/03; weaning

> > from keto due to metabolic acidosis, scared to death!!