Re: Langan in the hospital = (

[Guest guest]

Hi , how scary, but I am glad Langan is doing better.

Your staying in the ER story is very similar to what's happened to us

in the past before we are admitted to a ward even though they know

you are going to be admitted. It's so stupid, the reason I got was

that your daughter has to be stable in the ER before we move her up

to the ward. Yah right.

I hope you will be able to go home shortly. You are in my prayers.

Satnam

> 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

>

>

>

[Guest guest]

Thanks, . I like your take on it. My husband and I have been terrified

that the acidosis was causing the seizure control. I much prefer your positive

spin. = )

Re: Langan in the hospital = (

I hope all is ok now , if it's not one thing eh???

If Langan has been having an undiagnosed problem with acidosis, this may

be your missing puzzle piece as to why she hasn't attained 100% seizure

control up till now, here's hoping...

----- Original Message -----

> 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.

" 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

[Guest guest]

That is true for some unique kids ('s Jess being one), but certainly not

the status quo for keto kids. I would bet against that being your problem. And

since her bicarb was so low....she would be feeling sicker, etc. and you don't

want that. You can keep her fairly acidic and not loose seizure control without

going over the edge and being too low.

Hope that makes some sense.....and keep thinking positive!

Barb Swoyer

Re: Langan in the hospital = (

I hope all is ok now , if it's not one thing eh???

If Langan has been having an undiagnosed problem with acidosis, this may

be your missing puzzle piece as to why she hasn't attained 100% seizure

control up till now, here's hoping...

----- Original Message -----

> 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.

" 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

[Guest guest]

Thanks, . I don't think I was clear on where they want Langan. Our

keto team's goal is 16. But they don't want to send us home until she is up to

13. Then she'll be taking sodium bicarb by mouth to keep things stable, so it

looks like we have a good dose of blood draws in the near future so we can

figure out what dose she needs to stay stable but not go too high. Hopefully

we'll find a happy medium....

Thanks!

Re: Langan in the hospital = (

>

>

> ,

> It scared me to death when I first saw your posting about Langan

> in the hospital. At first I feared bad seizures. After reading

> your posting, though, my reaction is thankfulness for the astute

> care you are recieving from the Cincy team. Its great to know you

> are in such good hands.

> Thanks for taking the time to post the details. In addition to

> the care and concern we all feel for eachother, the wanting to know

> how Langan is doing and that she is OK, there is the fact that we

> can learn from eachother's experiences, too. I will certainly be

> watching for the rapid breathing

> I have heard some of you talk about changes in ketones as the

> medinces decrease/increase. Considering that Ethan has not been

> very hungry, lately, and that he is on a 4.5:1 ratio, I am watching

>

> for signs of too high ketosis. After reading your posting, I'm

> going to give him a rasperry to go with his alloted celery at lunch

> time.

> I hope you are home very soon; and that Langan stays well.

> Gretchen

>

>

> > 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

> >

> >

> >