Re: Could This Be the Trileptal?/Jill

[Guest guest]

Jill,

Langan is on 75 mg at night and 75 mg in the morning. We tried just

a night dose but got simple partials until we added the daytime

dose. And since we are coming off of keto b/c of Langan's severe

acidosis problem, we will have to take it 2X a day b/c of the short

half-life. I have heard from some others using trileptal that they

had sleep disturbances early on but that they went away. Here's

hoping that happens with Langan! She is close to her regular

schedule today so I am hoping that we are getting there. We are not

increasing the meds for now but are lowering the keto ratio again so

I have my fingers crossed!

That is so great that Claire is doing so well with just the night

dose and that her development has kicked in. I am so happy for you

and for her!! Yay, Claire!!

Thanks again for the info. Keep me posted on that sweet little

girl's progress!

> >Hello all. As I wrote a while back, because of Langan's dangerous

> >acidosis levels, we have reluctantly agreed to start her on

> >trileptal and slowly wean keto. Well, no surprise that we are now

> >in a quandry!!

> >

> >For the first 4 days of trileptal, I worried that Langan wasn't

> >napping at all and wasn't going to sleep until 10pm each night.

Days

> >5 and 6, she was taking long naps in the day and seemed too

sleepy.

> >Night 6 (last night) she was up ALL NIGHT playing. And then today

> >she has been super sleepy and cranky. Could it be the trileptal

> >doing this to her sleep schedule? It is just crazy. And I am

having

> >a tough time with the sleep deprivation- worse than usual b/c she

> >won't just " play " at night alone- she demands company and it has

to

> >be mommy. = 0

> >

> >I also checked her blood ketones this evening, during her beauty

> >sleep, and her ketones are off the charts. They shouldn't be that

> >high on this lower keto ratio and haven't been that high since we

> >lowered, that I have found. Could the trileptal be interacting

with

> >the diet?

> >

> >The neuro and I kept missing each other today b/c I was stuck in

> >court, but it sounds like they are leaving the next step up to me.

> >Any advice? No seizures in 10 days and developmentally, until this

> >sleep thing became a problem, Langan has made big advances. So it

> >is tempting to leave well enough alone. At the same time, this

> >strange sleep thing and Langan's lethargy during the day and these

> >high ketones have me concerned. Ketones naturally drop overnight,

> >right, so I am wondering if that's why the energy bursts

> >overnight??? No one told me I would need a neuro degree and a bio-

> >chem degree to raise a child. But since there are so many super

keto

> >experts here, I thought I would see if I could get some help from

> >you guys!

> >

> >Thanks!

> >

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

> >

> >

> >

> >

> >

> >

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

a last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

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