Re: vomiting

[Guest guest]

Michele,

I wish I had some ideas to offer but I don't. You and Aubrie are in my

prayers.

Lynn

vomiting

Help-

Aubrie is still sick!! She began with vomiting a week and a half ago on

Thu. She was vomiting fairly frequently thru the night. For about a

week, we got no sleep because she was vomiting thru the first half of

each night. She'd be ok during the day, but start again each evening.

This past Thu, we went to the pediatrician and had a full check. She

could find nothing in the office. No symptoms except the vomiting.

(She'd also been checked the Thu afternoon before the vomiting started

cuz I thought she could have an ear infection.) She had blood work and

an xray and those were both normal.

Last night, she finally slept thru the night without vomiting, but woke

up this am and puked twice! When her stomach is empty, she's throwing

up yellow bile. Sometimes she wretches for an hour before anything

comes out. Sometimes she just wretches hour after hour with nothing

coming up.

Her appetite is weird. She'll say she's hungry, but can only eat a bite

or 2 before she's done. Last night she ate a full dinner -- so I was

really hopeful that she was better.

The ped is calling in a referral to GI in St Louis. Of course, they're

closed today so I don't know when we'll get in. I hate for her to miss

another week of school -- but how do I know if she is safe to send when

she can seem fine one minute and puke the next?? I don't even want to

go get groceries today (which I haven't gotten since before Christmas)

because I don't want her to get sick in the store or get sick at home

with big brother.

I am worried that it's a return of reflux. Could that be brought on

after having the stomach flu? Could a virus lead to longterm reflux--

like it gets the cycle going and it just doesn't stop?? The vomiting

doesn't seem to be related to positioning. I mean, it's usually

starting in the evening, but often it's before she's laid down for the

night. Sat night it began in the car after a day of being up and around

all day. It just makes no sense. It's not related to anything she's

eating.

If anyone has any info or thoughts that might help, let me know!

Remember in the weeks before this I was talking about OCD etc? She had

been whiny and extra " weird " in the weeks before this started. So I

think it's been coming on for some time. I will feel very foolish if

she suddenly gets better and it seems that it was just a stomach virus.

It's so frustrating when our kids respond to things in unique ways and

make it so hard to figure out!

Michele W

Aubrie's mom 7 yrs

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Wow I really hope she gets better soon!

-Patty

[Guest guest]

Thanks. It's so strange. I think it's probably not CHARGE-related, but

I just don't know what it is. If it's really just the flu wreaking

havoc on her little body, I'll be frustrated.

Michele

LEM wrote:

> Michele,

> I wish I had some ideas to offer but I don't. You and Aubrie are

> in my prayers.

> Lynn

[Guest guest]

Has she complained of pain? My son did a lot of vomiting before they

took out his gallbladder last year. His blood work would come back normal,

but he would vomit everything. He vomited so much he has a large hiatal hernia

now. Something to keep an eye on. He would vomit so hard, and then get the

yellow bile, which turned to green bile. Keep us up on what is happening.

Good luck.

mom to 22 yr old cHaRGE'r

[Guest guest]

is the same way on not trusting the pain concept. just looked

sick, it was one of those looks that Mom's know. He lost a lot of weight (20

pounds). His started on Thanksgiving day and I thought he was just overeating.

I thought about viruses, cyclic vomiting. I just had an idiot doctor that

wouldn't put him in the hospital. I don't know about this vomiting. There

are just so many things it could be. Let us know.

Mom to

[Guest guest]

Sounds like reflux again. When ever I get sick the reflux acts up - flairs up,

and my swallowing goes downhill. I'll be hungry, but my swallowing just won't

let me eat. Ask her if she has a burning sensation in her throat, if so - then I

would have it checked out as soon as possible.

Sincerley yours; Krista.

Michele Westmaas wrote:

Help-

Aubrie is still sick!! She began with vomiting a week and a half ago on

Thu. She was vomiting fairly frequently thru the night. For about a

week, we got no sleep because she was vomiting thru the first half of

each night. She'd be ok during the day, but start again each evening.

This past Thu, we went to the pediatrician and had a full check. She

could find nothing in the office. No symptoms except the vomiting.

(She'd also been checked the Thu afternoon before the vomiting started

cuz I thought she could have an ear infection.) She had blood work and

an xray and those were both normal.

Last night, she finally slept thru the night without vomiting, but woke

up this am and puked twice! When her stomach is empty, she's throwing

up yellow bile. Sometimes she wretches for an hour before anything

comes out. Sometimes she just wretches hour after hour with nothing

coming up.

Her appetite is weird. She'll say she's hungry, but can only eat a bite

or 2 before she's done. Last night she ate a full dinner -- so I was

really hopeful that she was better.

The ped is calling in a referral to GI in St Louis. Of course, they're

closed today so I don't know when we'll get in. I hate for her to miss

another week of school -- but how do I know if she is safe to send when

she can seem fine one minute and puke the next?? I don't even want to

go get groceries today (which I haven't gotten since before Christmas)

because I don't want her to get sick in the store or get sick at home

with big brother.

I am worried that it's a return of reflux. Could that be brought on

after having the stomach flu? Could a virus lead to longterm reflux--

like it gets the cycle going and it just doesn't stop?? The vomiting

doesn't seem to be related to positioning. I mean, it's usually

starting in the evening, but often it's before she's laid down for the

night. Sat night it began in the car after a day of being up and around

all day. It just makes no sense. It's not related to anything she's

eating.

If anyone has any info or thoughts that might help, let me know!

Remember in the weeks before this I was talking about OCD etc? She had

been whiny and extra " weird " in the weeks before this started. So I

think it's been coming on for some time. I will feel very foolish if

she suddenly gets better and it seems that it was just a stomach virus.

It's so frustrating when our kids respond to things in unique ways and

make it so hard to figure out!

Michele W

Aubrie's mom 7 yrs

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Hmmm... let's keep in touch as both kids see the GI. Maybe we'll find

out something that will help the other. I hope you get the eye thing

figured out too.

Michele W

>

[Guest guest]

Thanks for the tip, Krista. We'll be seeing GI before the end of the

week. They aren't in the office to take appts today so I won't know for

sure til tomorrow. We loved the GI that we worked in infancy, but she's

moved away. I hope we get someone good again.

Michele W

>

[Guest guest]

Michele,

Has she ever had migraines? Especially abdominal migraines, which can cause

cyclical vomiting. Unfortunately, I believe the abdominal migraines are

CHARGE related. That would fit in nicely with the weird OCD episodes she

was having. Just an thought.

Debbie Matasker

Re: vomiting

Thanks. It's so strange. I think it's probably not CHARGE-related, but

I just don't know what it is. If it's really just the flu wreaking

havoc on her little body, I'll be frustrated.

Michele

LEM wrote:

> Michele,

> I wish I had some ideas to offer but I don't. You and Aubrie are

> in my prayers.

> Lynn

[Guest guest]

Michele, was Aubrie tested for roto-virus? Thats an extremely

contagious, long lasting stomach virus that can live for up to two

weeks, and re-infect. My girlfriend's daughter had it last year,

and as soon as she thought she was rid of it, it came back. My

other thought is that our GI told us to expect Sara's reflux to

flare up any time she was not feeling 100%, so maybe it is reflux.

Can they prescribe her phnergan suppository to help some?

thinking of you!

Mark

>

> > Michele,

> > I wish I had some ideas to offer but I don't. You and

Aubrie are

> > in my prayers.

> > Lynn

>

>

>

>

[Guest guest]

She's never had that that I am aware of. I have read the posts related

to abdominal migraines, but never really understood it since it wasn't

happening here. I'll mention it to the GI when I go. Anything specific

about that I should remember?

Bill Matasker wrote:

> Michele,

>

> Has she ever had migraines? Especially abdominal migraines, which can

> cause

> cyclical vomiting. Unfortunately, I believe the abdominal migraines are

> CHARGE related. That would fit in nicely with the weird OCD episodes she

> was having. Just an thought.

>

> Debbie Matasker

[Guest guest]

My dr didn't mention roto-virus. I will ask when they call me back

about the GI tomorrow. I can't help but have the reflux thought in the

back of my mind, but I really doubt that's it because Aubrie outgrew her

reflux by age 1.5 or 2 yrs and hasn't had any trouble with it since.

Why would it act up now? A long lasting virus makes the most sense to

me. But, of course, I have to be sure. I wonder if that was something

that would have shown up in the blood work she had done last week.

Michele W

Mark wrote:

>

> Michele, was Aubrie tested for roto-virus? Thats an extremely

> contagious, long lasting stomach virus that can live for up to two

> weeks, and re-infect. My girlfriend's daughter had it last year,

> and as soon as she thought she was rid of it, it came back. My

> other thought is that our GI told us to expect Sara's reflux to

> flare up any time she was not feeling 100%, so maybe it is reflux.

> Can they prescribe her phnergan suppository to help some?

> thinking of you!

> Mark

>

>

[Guest guest]

Michele,

my friend had to get a stool sample to test it. I thought the boys

had it one time, I think I found info on web md? I think it takes

10 days to two weeks to run it's course. Oh good luck Michele. I

hope for Aubrie's sake that it is Roto or something like it, and not

something chronic!

hugs,

>

> >

> > Michele, was Aubrie tested for roto-virus? Thats an extremely

> > contagious, long lasting stomach virus that can live for up to

two

> > weeks, and re-infect. My girlfriend's daughter had it last year,

> > and as soon as she thought she was rid of it, it came back. My

> > other thought is that our GI told us to expect Sara's reflux to

> > flare up any time she was not feeling 100%, so maybe it is

reflux.

> > Can they prescribe her phnergan suppository to help some?

> > thinking of you!

> > Mark

> >

> >

>

>

>

[Guest guest]

Well, I see someone beat me to it. My goddaughter had roto-virus

during the Christmas holidays. I took a good 2 1/2 weeks to clear

up but it don't come back. At least not yet...

>

> >

> > Michele, was Aubrie tested for roto-virus? Thats an extremely

> > contagious, long lasting stomach virus that can live for up to

two

> > weeks, and re-infect. My girlfriend's daughter had it last year,

> > and as soon as she thought she was rid of it, it came back. My

> > other thought is that our GI told us to expect Sara's reflux to

> > flare up any time she was not feeling 100%, so maybe it is

reflux.

> > Can they prescribe her phnergan suppository to help some?

> > thinking of you!

> > Mark

> >

> >

>

>

>

[Guest guest]

Whitney went through a spell when her stomach wasn't emptying, and she would

throw up bile. The G.I. prescribed prevacid and caafate for two weeks, but

the day after she saw the G.I., she became so dehydrated, that caused

breathing trouble, so she was admitted. She was then given an I.V.for about 3

days.

She also was given an antibiotic. It all seemed to clear up and it didn't

come back. I still do not know what caused it, or really what it was that

stopped it, so I don't know if this even helps, but thought I should share

anyhow. Their guess was that the medication after surgery slowed everything

down,

and so the food just wasn't going through fast enough, and so it just

started backing up. Good luck, I'm sure her Doctors will figure out the cause

and

so she can get back to normal soon.

DeAnn, Mom to Austin 9, 6, and CHARgE Whitney 18 months

[Guest guest]

So-- if it's migraine-related, then advil would be the thing? I have

some children's advil. She is totally fine right now. Has been for

hours now. Do I give her some before bed? Or wait til the first sign

of feeling bad?

Michele

Kim Lauger wrote:

> That is true Debbie. Advil is not something you would normally try for

> vomiting, but giving her some tonight and seeing how she does might

> give you

> an idea if it is a migraine or not. For Dylan there is improvement within

> 10 - 20 minutes.

>

> Kim

>

>

>

>

>

> >

> > Michele,

> >

> > Has she ever had migraines? Especially abdominal migraines, which

> can cause

> > cyclical vomiting. Unfortunately, I believe the abdominal migraines are

> > CHARGE related. That would fit in nicely with the weird OCD

> episodes she

> > was having. Just an thought.

> >

> > Debbie Matasker

> >

> > Re: vomiting

> >

> >

> > Thanks. It's so strange. I think it's probably not CHARGE-related, but

> > I just don't know what it is. If it's really just the flu wreaking

> > havoc on her little body, I'll be frustrated.

> >

> > Michele

> >

> > LEM wrote:

> >

> >> Michele,

> >> I wish I had some ideas to offer but I don't. You and Aubrie are

> >> in my prayers.

> >> Lynn

> >

> >

> >

> >

[Guest guest]

She's vomiting a lot of bile. But isn't she young for gall bladder

trouble? But, then, do our kids do anything on a typical schedule??

She's not complaining of any pain. But this is a kid who typically

doesn't complain of pain. She had an infected splinter that she never

told me about! And complained of no pain after her hip surgery.

Nothing hurts her, but it's excrutiating to get her nails clipped or

hair washed -- so I don't trust her pain concept.

Michele W

Crickmore7@... wrote:

> Has she complained of pain? My son did a lot of vomiting before

> they

> took out his gallbladder last year. His blood work would come back

> normal,

> but he would vomit everything. He vomited so much he has a large

> hiatal hernia

> now. Something to keep an eye on. He would vomit so hard, and then

> get the

> yellow bile, which turned to green bile. Keep us up on what is

> happening.

> Good luck.

> mom to 22 yr old cHaRGE'r

[Guest guest]

Michele,

I'd give it a whirl; it's Advil, so I can't imagine it can hurt anything. Let

us know how it goes.

LIsa

Michele Westmaas wrote:

So-- if it's migraine-related, then advil would be the thing? I have

some children's advil. She is totally fine right now. Has been for

hours now. Do I give her some before bed? Or wait til the first sign

of feeling bad?

Michele

Kim Lauger wrote:

> That is true Debbie. Advil is not something you would normally try for

> vomiting, but giving her some tonight and seeing how she does might

> give you

> an idea if it is a migraine or not. For Dylan there is improvement within

> 10 - 20 minutes.

>

> Kim

>

>

>

>

>

> >

> > Michele,

> >

> > Has she ever had migraines? Especially abdominal migraines, which

> can cause

> > cyclical vomiting. Unfortunately, I believe the abdominal migraines are

> > CHARGE related. That would fit in nicely with the weird OCD

> episodes she

> > was having. Just an thought.

> >

> > Debbie Matasker

> >

> > Re: vomiting

> >

> >

> > Thanks. It's so strange. I think it's probably not CHARGE-related, but

> > I just don't know what it is. If it's really just the flu wreaking

> > havoc on her little body, I'll be frustrated.

> >

> > Michele

> >

> > LEM wrote:

> >

> >> Michele,

> >> I wish I had some ideas to offer but I don't. You and Aubrie are

> >> in my prayers.

> >> Lynn

> >

> >

> >

> >

[Guest guest]

I'll sure keep you posted. I'm thankful that our local ped takes me

seriously and leaves no stone unturned with Aubrie. I hate to jump the

gun on something that may end up being nothing. But she has lost nearly

4 lbs -- and had just surpassed 40 lbs finally! After making the big

goal, she's back to less than 38. 10% of your body weight is

significant for anybody -- and more so for a kids who's tiny anyway.

Now that she's feeling so well, I am thinking she'll be all good

tomorrow and I'll be the big foolish mom -- but that's what I thought

last night!

Michele W

Crickmore7@... wrote:

> is the same way on not trusting the pain concept. just looked

> sick, it was one of those looks that Mom's know. He lost a lot of

> weight (20

> pounds). His started on Thanksgiving day and I thought he was just

> overeating.

> I thought about viruses, cyclic vomiting. I just had an idiot doctor

> that

> wouldn't put him in the hospital. I don't know about this vomiting.

> There

> are just so many things it could be. Let us know.

> Mom to

[Guest guest]

She says nothing else hurts. She was complaining of a headache early on

in the illness, but not anymore. She says nothing feels bad except her

stomach. And she'll say that feels all better just seconds after

puking-- then have her head in the bucket again one second later...

Michele W

>

[Guest guest]

I am not sure, I have only used tylenol. However, 's migraines were

severe enough to put him on Depakote, so we rarely have to give him anything

else for it. He usually complains with a headache, he gets terrible

headaches. He also use to retch all the time. He hasn't retched since on

Depakote. He was never hungry, only after starting the depakote did he ask

for his tube. I am sure he would throw up if he could, but he has a fundo.

Is she able to tell you what hurts her? Maybe she can give you information

as to what she feels like before throwing up, if a headache comes before or

after or not at all. My son always gets a headache along with the nausea.

If it continues I would definitely investigate, if it disappears soon you

know it is viral or some sort of flu or bug, but that usually comes with

fever. I do know that when gets sick his stomach can take up to 3

weeks to return to normal. I know it is frustrating to decipher what is

actually going on.

Debbie Matasker

Re: vomiting

> >

> >

> > Thanks. It's so strange. I think it's probably not CHARGE-related, but

> > I just don't know what it is. If it's really just the flu wreaking

> > havoc on her little body, I'll be frustrated.

> >

> > Michele

> >

> > LEM wrote:

> >

> >> Michele,

> >> I wish I had some ideas to offer but I don't. You and Aubrie are

> >> in my prayers.

> >> Lynn

> >

> >

> >

> >

[Guest guest]

You're right, I don't think it's the GI tract. We had an xray and

everything seemed to be moving fine. Since she's doing ok now, I'm

feeling on the foolish side and thinking it'll all be better tomorrow

and it was a virus. But... when we saw the dr on Fri and had all the

tests done, she was better and I felt foolish. Then she got sick that

night, Sat night, Mon morning... weird.

I know it's not a big thing -- not like some of the crisis we deal with

here. But it has made me feel better to have a conversation with

someone. I've been out of touch with friends thru all this and DJ just

doesn't see it as seriously as I do. Plus, he doesn't like to talk

something to death the way I do :-)

Michele W

Kim Lauger wrote:

> Michele,

>

> This reminds me one time Dylan's stomach did stop emptying, he could not

> keep anything down during that phase. I don't know how we stayed out

> of the

> hospital, one of the few times I would have been glad to have had him

> admitted. I am sure all of these answers are making you even more

> nuts, it

> could be this, it could be that, but each one really is different. If she

> is eating at all and only getting into vomiting cycles occasionally

> then it

> doesn't seem like a problem of the GI track stopping.

>

> Kim

[Guest guest]

I know this is a too late to help...'s doctors trust me to dispense

phenergan (I have a stockpile of liquid and supositories) when she has vomiting.

Couldn't they have given you anything to at least relieve her symptoms! I have

a very low tolerance for vomiting!

Lori Myers

-------------- Original message --------------

>

> Help-

> Aubrie is still sick!! She began with vomiting a week and a half ago on

> Thu. She was vomiting fairly frequently thru the night. For about a

> week, we got no sleep because she was vomiting thru the first half of

> each night. She'd be ok during the day, but start again each evening.

>

> This past Thu, we went to the pediatrician and had a full check. She

> could find nothing in the office. No symptoms except the vomiting.

> (She'd also been checked the Thu afternoon before the vomiting started

> cuz I thought she could have an ear infection.) She had blood work and

> an xray and those were both normal.

>

> Last night, she finally slept thru the night without vomiting, but woke

> up this am and puked twice! When her stomach is empty, she's throwing

> up yellow bile. Sometimes she wretches for an hour before anything

> comes out. Sometimes she just wretches hour after hour with nothing

> coming up.

>

> Her appetite is weird. She'll say she's hungry, but can only eat a bite

> or 2 before she's done. Last night she ate a full dinner -- so I was

> really hopeful that she was better.

>

> The ped is calling in a referral to GI in St Louis. Of course, they're

> closed today so I don't know when we'll get in. I hate for her to miss

> another week of school -- but how do I know if she is safe to send when

> she can seem fine one minute and puke the next?? I don't even want to

> go get groceries today (which I haven't gotten since before Christmas)

> because I don't want her to get sick in the store or get sick at home

> with big brother.

>

> I am worried that it's a return of reflux. Could that be brought on

> after having the stomach flu? Could a virus lead to longterm reflux--

> like it gets the cycle going and it just doesn't stop?? The vomiting

> doesn't seem to be related to positioning. I mean, it's usually

> starting in the evening, but often it's before she's laid down for the

> night. Sat night it began in the car after a day of being up and around

> all day. It just makes no sense. It's not related to anything she's

> eating.

>

> If anyone has any info or thoughts that might help, let me know!

> Remember in the weeks before this I was talking about OCD etc? She had

> been whiny and extra " weird " in the weeks before this started. So I

> think it's been coming on for some time. I will feel very foolish if

> she suddenly gets better and it seems that it was just a stomach virus.

> It's so frustrating when our kids respond to things in unique ways and

> make it so hard to figure out!

>

> Michele W

> Aubrie's mom 7 yrs

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information

> will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact

> CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

hi Michele,

can't help on the vomming front, hope you find a solution soon.

had to wonder if you can grocery shop online where you are though? - i

did a lot of grocery shopping like that when ds was really little and i

couldn't get out to the shops easily... it costs a little bit for the

delivery but i always found it a life saver!

cheers,

Jo

ds Ben 5, ds Josh 2 my little CHaRGE'r who just spent a few hours at the

beach today complete with ski goggles and togs :0)

Michele Westmaas wrote:

>Help-

>Aubrie is still sick!!

>

>

[Guest guest]

Of course, she's fine (so far) this am. Just as soon as I call the dr

and give the call for help to you guys, she seems to be fine. Anyway--

her vomiting was so sporadic that I probably wouldn't have given her

medicine for it. It never went on too long continuously. If it was

" all " night, it was every hour for 4 hours at most with rest in

between. In any case, let's hope it's all over for good!!

Michele W

myerstl@... wrote:

> I know this is a too late to help...'s doctors trust me to

> dispense phenergan (I have a stockpile of liquid and supositories)

> when she has vomiting. Couldn't they have given you anything to at

> least relieve her symptoms! I have a very low tolerance for vomiting!

>

> Lori Myers