Re: Satnam/Kristan

[Guest guest]

Satnam,

I am so sorry about the tough time Kristan is having right now.

Ugh. Seems like you could get a break SOME TIME doesn't it??? I

hope it is the teething. Langan went through HELL with her molars,

if that is any consolation. I guess there is a reason we don't

remember those early years as we get older- the teething thing is so

painful!!!

That is great news about the new sounds and the fake cough!! Langan

does that fake cough thing for attention, too. It is just the

cutest thing! I am glad to hear it puts a smile on your face!!!

I don't know if the carnitore is the secret with Langan, or if it is

a result of getting the acidosis under control, or something else or

a combo or what. But we have seen definite improvements since

increasing the carnitine so I am not going to change anything about

that now. Langan was never tested for carnitine deficiency prior to

going on the carnitine, so I am not sure how those levels were. Our

neuro's thinking was that Langan has something metabolic going on,

which could possibly be a mitochondrial problem. And carnitine is

beneficial in those situations, to help the body transport and

efficiently use energy. So we are on it- 660 mg a day. We are

battling insurance about it right now- they keep saying it is a diet

supplement and making me CRAZY- but we are sucking it up for now and

paying for it b/c the changes in Langan are just too good to risk

losing them now.

I hope things get better for Kristan soon. Please know I am

thinking of her, and that you and that sweet girl are in my thoughts

and prayers!

, mom to Langan, 2 yrs old and keto kid 11/03 through 9/9/04

but keto kid at heart forever; weaned due to severe metabolic

acidosis

> Hi , I read the post where you said Langan took her first

steps

> and is picking up her cheerios! That is so great, I am so happy

for

> you!

>

> Kristan's molars are coming in and the poor little thing is so

cranky

> and won't even take a solid meal right now, I don't blame her!

>

> We are going to go down to 3:1 next week, she is still having

> seizures anywhere from 20-40 a day. If they get any higher than

40

> than we really have to decide if she was better off on the higher

> ratio, but it also could be the teething that is making things

> worse. It's all so frustrating and scary.

>

> Good news is that in the last couple of days I have noticed

Kristan

> trying to make more different sounds, a bit of " oh's " are being

said

> in addition to the " hmm " and " umm " and she seems to be saying a

lot

> more of " ma " . Kristan has lately been doing a cough, I like to

call

> it a " fake cough " and then she gets her voice out, almost as if

her

> voice is stuck and she does the cough and then just starts

> vocalizing. It's so cute that it makes us laugh every time she

does

> it.

>

> So glad to hear the good news on Langan's development.

>

> Satnam, mom to Kristan, 22 months

> Keto kid since August 2003 and currently weaning diet