Re: Langan in the hospital /

April 23, 2004

-Hi -

Oh my goodness! What an ordeal you are going thru. Thankfully,

Langan appears to be unphased by all that's going on. I just posted a

message about having a rough couple of days. Did Cincy say

that the low bicarbs were a result of the change in metabolism from

eliminating the medication? has been very whiny (I'm not sure

moody is the word - but definitely irritable) What did you mean by

Langan being " moody " ? Come to think of it, he did spit up early

yesterday after b'fast but I had given him some Tylenol which he hates

so I thought he kind of choked that up (it smelled like puke - sorry!)

He's not breathing funny (that I have noticed) but am wondering if

this could be the same problem.

Why did your ped. say Wed. blood work was " normal " when in fact, her

bicarbs were low as identified by Cincy? What blood work did you ask

for? Just a CBC?

Very glad to hear that Langan is doing OK - how scary for all of

you!!! What IV bag did they give her? Wonder why Cincy didn't think

your local hospital could administer the IV with just a phone call -

instead of opting to make the 4.5 hour drive in the first place?

So, moodiness, fast breathing, and refusal to eat are the big signs?

has eaten nearly all of his food the past 2 days - didn't

finish a couple of meals when he was extremely whiny but all but a

couple of bites. UGHHHH....don't know what to do!

Hang in there! Keep us updated w/Langan's progress. Hopefully you

will be discharged this afternoon and can enjoy a peaceful weekend.

I've been thinking of you but have busy following around worried.

BIG BIG Hugs to you and Langan! She's quite a trooper!

-- In ketogenic , " Tucker " <tuckerwing@m...> wrote:

> Hi all. Just wanted to let everyone know that we are in the

hospital. I have seen some recent posts about vomiting and moodiness

and since those were two things we saw with Langan I wanted to pass on

our experience in case it helps anyone.

>

> First of all, we are fine. Were in the ER FOREVER until they got us

a room, which was frustrating b/c they knew early on that they were

admitting us. We got to a room by 9pm. The ER docs had me almost

crazy. They had never heard of keto and were looking at me like I was

some freak for putting my kid on a diet and pulling her meds. I told

them to call our neuro in Cincy and they copped that " god complex "

attitude, so I called Cincy and hooked them up and that seemed to

help. The ped doctors on the floor are much better. They have

actually heard of keto and they are in contact with Cincy, letting

them make the calls.

>

> From what I can gather, the problem is that Langan's blood has

become too acidic. It is amazing, really, that Cincy figured it out

from across the country. I emailed the dietician on Tuesday that I

was concerned that Langan needed some more meal plans b/c she was

starting to refuse meals again and screaming through them. I added as

a side note that she has been really spitty lately, too, so it might

be reflux and not the meals, but that I wanted to try some more

variety. She sent me new meal plans and said she was forwarding my

concerns to the neuro. Wednesday morning, the nurse called and said

the neuro wanted us to go get some blood work, just to be safe. We

went to the ped for the bloodwork on Wednesday evening and they called

my cell Wednesday night saying that the #s were in normal range (???)

and that they were forwarding the results to Cincy. No problemo. I

go to court yesterday and then run to the jail to quickly see a

client. I get out of the jail and there are all these missed calls on

my cell, so I immediately assume Langan had a seizure. But they are

Cincy and my husband. So I call my husband back and he tells me

that Cincy called and everything is ok but we have a small situation

that we need to deal with but it's no big deal but Cincy wants needs

me to get Langan up there NOW to admit her. I am like HUH????? (It

is a 4 1/2 hour drive which I will gladly do but it doesn't make sense

that it is nothing but they want us there) So I call the nurse and

she tells me that Langan's bi-carbs are really low and they can treat

it overnight with an IV and it is something that they see a lot with

the diet etc but they want us up there b/c they know the right IV

fluids to use for the diet and they know Langan, etc. So I am on my

way home to pack her up, still talking to the nurse, and she asks me

how Langan is doing. And I told her that she's fine. She said,

" She's not breathing fast or anything, is she? " And I said, " Funny

you should say that. We've noticed at night and when she's getting

ready to nap that she starts breathing really fast but she doesn't

seem in any distress. I was going to email you about it but now that

you mention it, yes. " She puts me on hold and then comes back on and

says that the neuro doesn't want me driving that distance with her

breathing like that b/c it could be dangerous and to get to the ER

now. She was really comforting and said that she was sure it would be

fine but just to be safe we needed to get to the ER and let them call

her and take it from there. So here we are.

>

> Langan's bicarbs were apparently 9 at the ped Wednesday and 7 here

yesterday, so they put her on an IV overnight (after 7 needle sticks.

grrrr) and then this morning they were only back up to 9. Soooo we

are still here. They are going to give her another bag on the IV and

then check her levels at 3pm and let us know whether we're going home

or staying. They all seem in agreement that they can get the levels

up to where Cincy wants them (16) and we can give her something orally

after that to keep it stable if necessary, but it is a SLOW process.

>

> Langan thinks she is on vacation- no therapy yesterday or today and

other than the 7 needle sticks, the catheter and the chest xray

(compliments of the ER doc who wouldn't call the Cincy folks until

after he tested for everything under the sun), she has been as happy

as a clam. She doesn't act sick or anything. They did say that her

being cranky, refusing meals and spitting can be symptoms of this so

here's hoping those go away when they get the levels up (well, maybe

the crankiness is part of her charm, though....)

>

> Just wanted to post this to update everyone and to let people know

that they might want to be on the look out for this. I feel stupid

that we didn't see it, but thankfully we have a great keto team that

is really on the ball!!

>

> , mom to Langan 21 months old and keto kid since 11/02, med

free since 4/2/04

>

April 23, 2004

Oh my, . Things can change so quickly! At least it sounds like

things are definitely improving and Langan is back on track. How did

she handle all of this seizure-wise? Are you at the big famous

hospital?

SOOOOOO good to read about the response/reaction you've gotten at

Cincinnati. It has nearly moved me to tears thinking that Macie is

in their hands, too. I talked to Sue several times in the last

couple of days. Everything we talk about she runs by Dr. H, which is

also extraordinary, I think. I told her just this morning how much I

appreciated being treated with so much respect and Macie getting so

much attention from them. I told her getting one phone call would be

a big improvement over what we had before, much less 4 in 2 days!

Which neuro overlooked the bicarb levels? Was it the keto one? If

so, that is scary, as he should be up on all that. This makes me so

mad to think that in all that time Macie never had any bloodwork done

for anything. I would have thought that at least when the seizures

came back they would have wanted to check into things further.

OK, I'll quit now before my blood pressure goes up!

I hope you'll be home soon, and that all of this will only help make

things even better for Langan in the long run.

Take good care,

Glenna

April 23, 2004