Re: Langan Update/Satnam

[Guest guest]

Satnam,

I have been following your posts about weaning Kristan and was

actually planning to send you a message but you beat me to it! I am

sorry that Kristan is still having seizures but relieved to see that

the wean does not seem to be causing her to have an increase. I hope

that continues as you continue to wean from the diet, and that the

seizures get less frequent. We were so scared about what would

happen but were incredibly fortunate to see even less seizures than

on 4:1 after our rapid wean. I sure would have preferred to do

things more slowly, but it couldn't be helped with Langan's

situation. Please keep me posted on how the wean goes for Kristan,

and know that I'll be thinking of you guys and praying for an easy

wean for you and her.

I know how hard it is to work on OT and ST on the diet, although I am

sure it can be done. But you are right- without seizure control it

just doesn't make sense. We couldn't work with finger feeding while

on keto b/c it was just too messy and we needed every bite to get

into her mouth instead of on the floor. She's working on it now and

there sure are lots of bites hitting the floor! LOL The bags of

food in the mouth sound like a great idea. I bet Kristan will get

lots of great chewing practice from that once you are able to do it.

Hang in there and keep me posted. Hugs to that sweet little girl!

> > Hello everyone. I have been lurking but not posting much these

> past

> > few weeks. I have been following the news on all my favorite

keto

> > kids and have noticed the number of new kids starting to diet.

How

> > exciting that there are so many more kids out there who will

> > hopefully find that keto is the answer they are looking for!

> >

> > I just wanted to update on my little one. She has now been

> > completely off of keto for 2 full weeks, after that 8 day rapid

> > wean. We have not seen one of her typical seizures since the

first

> > night of the wean, although we keep expecting to wake up and find

> > that they are back. We have seen some very short partials here

and

> > there in sleep but so far even those have been, knock on wood,

> > scarce. I finally put the scale away. In a bit of a panic the

> other

> > day when adding a new food, I pulled it out just to get an idea

of

> > what I was giving her and it wouldn't come on. Maybe a sign from

> God

> > that I really need to put it away. I am still trying to keep

> things

> > healthy for Langan, but she is enjoying her new-found freedom

with

> > foods. She finally had that Happy Meal last Saturday- ketchup

> > everywhere and she ate the whole cheeseburger. Her favorite

thing

> in

> > the whole meal was the juice box- I guess I should be thrilled

that

> > while most kids think cookies are a treat Langan thinks juice is,

> but

> > you know I still get nervous thinking of all those carbs!

> >

> > We did a blood gas test yesterday and, for the first time since

> this

> > whole acidosis nightmare started, her bicarbs were NORMAL. The

> > nephrologist is very happy with the results and we will repeat in

a

> > month. Her other levels were normal except for slightly low

> > creatine, but he is not worried about that for now. We are still

> > supplementing with bicitra but I am just so happy to have a

normal

> > bicarb that I don't know what to do. It appears that the

acidosis,

> > if it was pre-existing as it now appears, may have been a huge

> factor

> > in the seizures we were seeing. At least we are hoping so....

> >

> > Langan's development continues to move forward, too, probably due

> to

> > the acidosis finally being under control. She is getting

stronger

> > every day and now much prefers standing to sitting, which for a

> child

> > who several months ago didn't want to sit or hold her head up is

> > amazing to me. She is still too wobbly to stand without

something

> to

> > grab onto and still hasn't figured out the whole walking thing,

but

> > we are hopeful that if she remains stable that will come.

> >

> > I just wanted to post an update and to let everyone know that we

> > think about you and these precious keto kids every day. I hope

> > everyone is well. We'll be lurking.... and praying for the best

> for

> > all of these great families!

> >

> > , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04;

> weaned

> > due to severe metabolic acidosis, but keto kid at heart forever!