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

[Guest guest]

,

What a sweet thing to say! Thank you so much. I have gotten so much

inspiration from you and the other parents here. It is really nice

to think that someone has gotten some from Langan and me.

I remember the posts about your son and think of you more than you

know. Your strength amazes and humbles me. Hang in there. I know

what you mean about the parents that don't stick it out. I can't

imagine doing things any other way than we have done them, but I feel

for those kids whose parents can't or won't do it. I learn from

Langan every day. Those parents are missing out so much from not

being there for their little angels.

I'll be around- promise!

Take care!

> > 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. = (