Re: Re: Langan in the hospital /

[Guest guest]

,

I am sure is fine but it wouldn't hurt to get his levels checked, just to

be sure. Langan's crankiness has been more of the whining, wanting to be held

kind. And her spit up smells like vomit, too, so it may be worth checking into,

but don't worry too much.

Cincy didn't say exactly why but I guess it's possible that something in the

meds had an effect on her bicarbs BUT I just learned that the blood tests our

FORMER neuro did in JANUARY had the same reading that we got Wednesday that sent

us here. Nice, huh? Have they ever even mentioned that there was anything

wrong or to worry about? Nope. But it might explain why Langan has been so

moody and spitty. And we thought it was the diet. Grrrrr.

It wasn't my ped but the doc on call who said the results were in normal limits.

I have no idea why, but that is scary. I wonder if he just thought that it was

low b/c of the diet and didn't realize how low was bad. Scary that he would

have just let it go. Glad he's not my doc....

I think Cincy preferred to treat themselves b/c (1) they are sooo hands on; (2)

they were worried that the IV would have glucose otherwise; and (3) they knew

the right oral brand that is glucose/carb free. The ped here has been really in

touch with them and just commented that she couldn't believe how many people

from Cincy were calling her about Langan and she was so glad to have them so

involved. Amen, I say!

OK, gotta go hang with the goose. We are hoping to get out of here this

evening. Wish us luck!

Hugs to ! I hope he is feeling better!

Re: Langan in the hospital /

-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

>

>

>

[Guest guest]

,

I am sure is fine but it wouldn't hurt to get his levels checked, just to

be sure. Langan's crankiness has been more of the whining, wanting to be held

kind. And her spit up smells like vomit, too, so it may be worth checking into,

but don't worry too much.

Cincy didn't say exactly why but I guess it's possible that something in the

meds had an effect on her bicarbs BUT I just learned that the blood tests our

FORMER neuro did in JANUARY had the same reading that we got Wednesday that sent

us here. Nice, huh? Have they ever even mentioned that there was anything

wrong or to worry about? Nope. But it might explain why Langan has been so

moody and spitty. And we thought it was the diet. Grrrrr.

It wasn't my ped but the doc on call who said the results were in normal limits.

I have no idea why, but that is scary. I wonder if he just thought that it was

low b/c of the diet and didn't realize how low was bad. Scary that he would

have just let it go. Glad he's not my doc....

I think Cincy preferred to treat themselves b/c (1) they are sooo hands on; (2)

they were worried that the IV would have glucose otherwise; and (3) they knew

the right oral brand that is glucose/carb free. The ped here has been really in

touch with them and just commented that she couldn't believe how many people

from Cincy were calling her about Langan and she was so glad to have them so

involved. Amen, I say!

OK, gotta go hang with the goose. We are hoping to get out of here this

evening. Wish us luck!

Hugs to ! I hope he is feeling better!

Re: Langan in the hospital /

-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

>

>

>

[Guest guest]

,

I am sure is fine but it wouldn't hurt to get his levels checked, just to

be sure. Langan's crankiness has been more of the whining, wanting to be held

kind. And her spit up smells like vomit, too, so it may be worth checking into,

but don't worry too much.

Cincy didn't say exactly why but I guess it's possible that something in the

meds had an effect on her bicarbs BUT I just learned that the blood tests our

FORMER neuro did in JANUARY had the same reading that we got Wednesday that sent

us here. Nice, huh? Have they ever even mentioned that there was anything

wrong or to worry about? Nope. But it might explain why Langan has been so

moody and spitty. And we thought it was the diet. Grrrrr.

It wasn't my ped but the doc on call who said the results were in normal limits.

I have no idea why, but that is scary. I wonder if he just thought that it was

low b/c of the diet and didn't realize how low was bad. Scary that he would

have just let it go. Glad he's not my doc....

I think Cincy preferred to treat themselves b/c (1) they are sooo hands on; (2)

they were worried that the IV would have glucose otherwise; and (3) they knew

the right oral brand that is glucose/carb free. The ped here has been really in

touch with them and just commented that she couldn't believe how many people

from Cincy were calling her about Langan and she was so glad to have them so

involved. Amen, I say!

OK, gotta go hang with the goose. We are hoping to get out of here this

evening. Wish us luck!

Hugs to ! I hope he is feeling better!

Re: Langan in the hospital /

-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

>

>

>

[Guest guest]

I have seen it happen that after the meds are gone, ratio needs to be

adjusted either up or down. Depakote in particular, you often have to

lower ratio as you wean, then when its gone, up the ratio again. Not

saying thats up with .....

The blood work that is done is blood gasses. Gives you ph, bicarb, CO2

and a few other things. The most important number apparently is the

bicarb. When Jess first started diet and the drs panicked and made us

quit her bicarb was down to 10 and her glucose down to 2. She now needs

bicarb less than 17 for seizure control, does best around 15 or so.

michelle101291 wrote:

> -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

> >

> >

> >

[Guest guest]

Glenna,

Thanks so much for the good wishes. I am with you- Cincy is just on a whole

different level.

We are at " that " hospital. Fun, huh? actually came by yesterday thinking

we were still with their team. I was honest with her about the communication

problems and she said she has heard that from several parents. I really felt

bad for her- I think she is caught in the middle.

We're still here- Sat morning- and not sure when we'll leave. The level is 12

and they want 13 to release us, per Cincy, so they have a call in to them.

They've been increasing agonizingly slowly but it is at Cincy's request,

apparently, b/c overshooting could bring back the seizures. Sooo we're willing

to sit and wait (like we have a choice??). Langan is loving it. She and Jon

are in the playroom having a blast. This new facility is very nice. I'll say

that for it!

It was the neuro who ordered blood work in January and never gave a peep about

it. The Cincy folks had the peds doctor here pull any old blood work and there

it was. Just makes me ten thousand times more thankful that you steered us in

Dr. Holder's direction!!

The ped resident on the floor here yesterday commented that she couldn't believe

the reaction from Cincy. She said " The neuro calls, the nurse calls, another

neuro calls, a dietician calls. These people are really involved! " Made me

smile. Ah, how times have changed....

Seizure-wise, all is happy here. Not going to put it in writing (the jinx

factor) but we are VERY pleased. Even those zone outs seem to be disappearing,

so I wonder if they were related to this??? Or lamictal wean? Who knows.

How is Macie? If you have talked to Sue that much, something must be up.

Please let me know. I think of you guys all the time and pray that all is

peaceful there.

Re: Langan in the hospital /

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

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

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