Re: Sad Day- Langan coming off keto = (/Satnam

[Guest guest]

Satnam,

I am so sorry that Kristan is having a hard time. It seems like so

many kids are right now- I wonder if it has to do with summer???

I'll be thinking of you guys and checking in on Kristan's progress.

Hang in there and thanks for the words of encouragement!

> > Hello all. I have delayed posting this message b/c I really

didn't

> > want to face this myself, but we are doing what we have to do.

> After

> > yet another hospitalization last week due to metabolic acidosis,

we

> > have reluctantly decided to take Langan off of keto. I am so sad

> > about this, but I do believe in my heart that it is the right

thing

> > to do for her. For whatever reasons, her little body can't

handle

> > the diet. We have given it seven + months and have had the

> pleasure

> > of seeing her med free for the past 3 + months, but things have

> once

> > again gotten out of control. Her bicarbs bottomed out again and

> she

> > started having seizures every day, which hasn't happened since

she

> > was first diagnosed. As per our neuro's advice, we are slowly

> taking

> > her off of keto. She was on a 4:1 ratio and will be at 3:1 for

two

> > weeks and we'll see where we are. There is a tiny part of me

that

> is

> > hopeful that she can gain seizure control and avoid acidosis at

one

> > of the lower ratios, but I don't know how realistic that is. She

> was

> > taking more bicarbonate than it looked like her little body could

> > take and it just wasn't helping. The kidney doctor thinks that

the

> > acidosis is clearly pre-keto and may explain some of her issues

and

> > give us a clue as to her diagnosis. That alone is enough to make

> me

> > grateful that we tried keto, as we would have never known what a

> > bicarb even was before. But it does make sense- the reflux;

growth

> > delays; moodiness. We are hoping that we can get the acidosis

> under

> > control once she's off keto and see how she does when she is

> finally,

> > probably for the first time in her life, feeling good. Our neuro

> has

> > given us samples of trileptal but doesn't want us to use it until

> we

> > see how Langan does as she comes off keto. That is terrifying-

> like

> > walking a tightrope without a net- but I am thankful that she is

> not

> > super-eager to start the meds. I HATE the meds. I just hate the

> > acidosis and the seizures more. = (

> >

> > I plan to stick around and participate in the group when I can.

> You

> > guys have gotten us through so much that I would feel like I was

> > leaving family to check out now. And who knows. If it turns out

> > that the acidosis is not pre-existing, maybe we can try keto

again

> > down the road. Despite the complications, it really has been

worth

> > the ride.

> >

> > Hugs to all of your little ones!!

> >

> > , mom to Langan, 2 yrs old on 7/19 and keto kid since 11/03;

> > starting to come off keto now b/c of acidosis problems; med free

> > since 4/2/04 and not looking forward to meds again. = (