Re: Update on outbursts-u won't believe this (or maybe you will!)!!

May 27, 2002

Ruth,

I am glad things turned out okay and it doesn't surprise me ONE BIT that MOM

made the dx that something was medically wrong with him... We DO know best...

I'm glad that is feeling better...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Update on outbursts-u won't believe this (or maybe you

will!)!!

Hi guys, it's me, Ruth in SLC. I wrote a few weeks ago about the

uncontrollable outbursts my almost 4 year old son was having.

Everyone in a therapy profession thought it was medical and everyone in a

medical profession thought it was behavioral.

WELL, after much confusion and no change in his behavior, suddenly

decided to help us find out the problem.

He has a nissen and on Tues the bus driver called me to tell me he was

gagging. I wasn't too worried because he'd be home in a few minutes and I

could vent him and then feed him. He got home, I vented and started to feed

him and he threw up everywhere-thru his mouth and g-tube!! I thought he had

some flu bug. He went to sleep like you do when you have the flu, but he

kept throwing up and pretty soon it turned into bright yellowish-green bile!

I called the gastroenterologist on call and he said get to the ER now! We

went to the ER and to make a long story short, we discovered that

had a mass of stool the size of a TENNIS BALL in his PELVIC CAVITY therefore

making it undetectable in abdominal exams (ie his stomach was soft and he

had good bowel sounds so no one ever thought anything of it). It was not

detectable except by a KUB xray (don't ask me what that is) AND I found out

that they can still be having bm's AROUND the mass so you have no suspicion

or reason to suspect that the bowels are the problem-he's been having bm's

just fine.

The poor child has had SEVEN milk and molasses enemas and finally broke up

the mass and is now trying to get rid of all the gas blocked in his

intestines. His intestines do tend to dilate so it is harder for him to move

things thru, they discovered, so now he is on medications galore to help it

from happening again.

He's always been a little constipated, but it was somewhat manageable and

the docs were aware.

I KNEW IT WAS SOMETHING MEDICAL!!!! To say the least, I did the " I told you

so " dance in front of my pediatrician (who ordered CBC's, EEG's and a

sedrate test-which all came back normal) who always told me there was no way

that it was medical, only behavioral.

So once again, we discover that mother really DOES know best. He also did

one of his outbursts in front of the medical staff and they all just stood

there gawking at him and said that there was very obviously something

medically wrong w/this child---well DUHHHH!!!!

Since we got here, they've been great and they're really working to help us.

I love this hospital (Primary Children's) and they will follow up and watch

us closely now.

We are going home today (Sunday) if he can hold down this last tube feed. I

should know w/this kid to always throw caution to the wind and just assume

it's something freakishly odd with him just because of who he is!!

Oh, and btw, he hasn't had an outburst for 2 days now.....

Ruth in SLC

mom to (a much happier CHARGEr who's almost 4), Mindy (an 11 mos old

whose happy to have a calm brother back) and wife to Mike (the most patient

man in the world for dealing with all of us!)

_________________________________________________________________

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May 27, 2002

How frustrating when you go back and forth knowing there had to be a reason

and everyone passing the buck. It seems to me this issue with the colon is

very common with our kids, and if checked many of them would have similar

issues. We have been trying some naturopathic treatments for Dylan (5 yrs),

and trying very hard to avoid the enema route.

Kim

Mom of Dylan 5, Kayla 11, Tyler 14, wife of Roy

----------

>

>To: CHARGE

>Subject: Update on outbursts-u won't believe this (or maybe you

will!)!!

>Date: Sun, May 26, 2002, 2:22 PM

>

> Hi guys, it's me, Ruth in SLC. I wrote a few weeks ago about the

> uncontrollable outbursts my almost 4 year old son was having.

> Everyone in a therapy profession thought it was medical and everyone in a

> medical profession thought it was behavioral.

> WELL, after much confusion and no change in his behavior, suddenly

> decided to help us find out the problem.

> He has a nissen and on Tues the bus driver called me to tell me he was

> gagging. I wasn't too worried because he'd be home in a few minutes and I

> could vent him and then feed him. He got home, I vented and started to feed

> him and he threw up everywhere-thru his mouth and g-tube!! I thought he had

> some flu bug. He went to sleep like you do when you have the flu, but he

> kept throwing up and pretty soon it turned into bright yellowish-green bile!

> I called the gastroenterologist on call and he said get to the ER now! We

> went to the ER and to make a long story short, we discovered that

> had a mass of stool the size of a TENNIS BALL in his PELVIC CAVITY therefore

> making it undetectable in abdominal exams (ie his stomach was soft and he

> had good bowel sounds so no one ever thought anything of it). It was not

> detectable except by a KUB xray (don't ask me what that is) AND I found out

> that they can still be having bm's AROUND the mass so you have no suspicion

> or reason to suspect that the bowels are the problem-he's been having bm's

> just fine.

> The poor child has had SEVEN milk and molasses enemas and finally broke up

> the mass and is now trying to get rid of all the gas blocked in his

> intestines. His intestines do tend to dilate so it is harder for him to move

> things thru, they discovered, so now he is on medications galore to help it

> from happening again.

> He's always been a little constipated, but it was somewhat manageable and

> the docs were aware.

> I KNEW IT WAS SOMETHING MEDICAL!!!! To say the least, I did the " I told you

> so " dance in front of my pediatrician (who ordered CBC's, EEG's and a

> sedrate test-which all came back normal) who always told me there was no way

> that it was medical, only behavioral.

> So once again, we discover that mother really DOES know best. He also did

> one of his outbursts in front of the medical staff and they all just stood

> there gawking at him and said that there was very obviously something

> medically wrong w/this child---well DUHHHH!!!!

> Since we got here, they've been great and they're really working to help us.

> I love this hospital (Primary Children's) and they will follow up and watch

> us closely now.

> We are going home today (Sunday) if he can hold down this last tube feed. I

> should know w/this kid to always throw caution to the wind and just assume

> it's something freakishly odd with him just because of who he is!!

>

> Oh, and btw, he hasn't had an outburst for 2 days now.....

>

> Ruth in SLC

> mom to (a much happier CHARGEr who's almost 4), Mindy (an 11 mos old

> whose happy to have a calm brother back) and wife to Mike (the most patient

> man in the world for dealing with all of us!)

>

> _________________________________________________________________

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> http://photos.msn.com/support/worldwide.aspx

>

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

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> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

May 27, 2002