/'s Mom

[Guest guest]

,

Sorry to take so long to get back to you. Things here are crazy as

ever. We are moved in but have no furniture in most of the rooms,

so it is a little wild. In a span of 2 weeks, we moved, flew to

Rhode Island to visit the in-laws and spent 3 days in the hospital

in Cincy. Oh, and trying to work through all of that. Whew! What

a whirlwind! It has been nice to be home this past week, even if we

are sitting on the floor. = )

Great news on those test results! I know how nerve-racking it can

be to have tests " out there " for bad stuff. An answer would be

nice, but no answer sure is better than some of the bad ones! I am

also so glad that you have made the dairy discovery with .

What are you giving him in place of the cream? We are still using

the yo-gourmet yogurt maker and Langan loves the yogurt, which is a

bonus!

We're at 3:1 right now and our neuro has given me the choice of

staying her for a while or going completely off keto and starting

meds. We're seeing how the weekend goes before we decide. So far,

so good. They added a 1/2 meal, which is nice, b/c Langan's

appetite has really increased with this lower ratio. I'm in no

hurry to make any changes. As long as she's stable, we're good.

She is so much happier these days! Her bicarbs were 20 on Thursday

so maybe this ratio is what we needed- who knows. She has a history

of going up and down, though, so I'll need to see a few more levels

before I am convinced. It gave us hope about staying on keto, so

we'll see. You know, I daydreamed about feeding her whatever and

whenever, no scale involved, and that was nice. But then the meds

entered the daydream and it became a nightmare.... so we'll see. I

hate that we have to make these choices and that these kids can't

have it all, but I guess that's why we're the moms!!

Monday is Langan's second birthday and we held off scheduling any

party until we were off the diet (when we thought we would be

weaning quickly). Now we may be scheduling something with a

cheesecake, if all continues to go well.

OK, gotta get a few things done while Jon and Langan are out on a

run. Enjoy the rest of your vacation and keep me posted on the

little guy when you can!

Hugs to !

> 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. = (

>

>

>

> " 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!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>