Admission to Hospital

October 26, 2006

I am new to the group and posted last week about my 4 year old son

who is currently battling inflammatory hepatitis as a result of his

auto-immune disease (this has thus far been a mystery as to what

type of disease it is that he has). I went to the lab yesterday and

had blood labs drawn and found to my horror that his bilirubin has

gone from 7 to 12 and his liver enzymes and clotting factors have

gotten much worse as well.

I spoke with his doctor a while ago and she seems quite upset and

not really sure what to do at this point. Our thoughts are now that

he must be admitted to see if perhaps an IV steroid might absorb

better and give him a kick start to recovery. I personally believe

that she is grasping at straws, but the only ones that she can find.

I live in the Boston area and with so many doctors available, it

seems as though someone must be able to help. He is seen at

Children's Hospital, but they don't seem to have anyone other than

his GI doctor to help him. Does anyone know of someone that I could

speak with that might be able to offer some help to the doctor

here? I feel like I'm waiting around and doing nothing to help my

little boy.

Thanks.

October 26, 2006

>

> I am new to the group and posted last week about my 4 year old son

> who is currently battling inflammatory hepatitis as a result of

his

> auto-immune disease (this has thus far been a mystery as to what

> type of disease it is that he has). I went to the lab yesterday

and

> had blood labs drawn and found to my horror that his bilirubin has

> gone from 7 to 12 and his liver enzymes and clotting factors have

> gotten much worse as well.

>

> I spoke with his doctor a while ago and she seems quite upset and

> not really sure what to do at this point. Our thoughts are now

that

> he must be admitted to see if perhaps an IV steroid might absorb

> better and give him a kick start to recovery. I personally

believe

> that she is grasping at straws, but the only ones that she can

find.

>

> I live in the Boston area and with so many doctors available, it

> seems as though someone must be able to help. He is seen at

> Children's Hospital, but they don't seem to have anyone other than

> his GI doctor to help him. Does anyone know of someone that I

could

> speak with that might be able to offer some help to the doctor

> here? I feel like I'm waiting around and doing nothing to help my

> little boy.

>

> Thanks.

>

I kind of know where you are coming from my daughter who is 7 has

auto immune hepatitis. She was diagnosed in May of this yr. I live

in Illinois. Do you have a pediatric gastro in your area or at your

hospital?

October 26, 2006

Hi! You know what? I cant be of any help but i reply to your msg because what u

feel right now, is also what im feeling at this time. If you read my post, its

also because of my son. He's 5, a yr older than your son. Im so sad that this

happens to kids so very young. Our only consolation is that, atleast we are

doing our best to have our sons treated. I will pray for your son as well.

kmanmom2002 <ktellier@...> wrote: I am new

to the group and posted last week about my 4 year old son

who is currently battling inflammatory hepatitis as a result of his

auto-immune disease (this has thus far been a mystery as to what

type of disease it is that he has). I went to the lab yesterday and

had blood labs drawn and found to my horror that his bilirubin has

gone from 7 to 12 and his liver enzymes and clotting factors have

gotten much worse as well.

I spoke with his doctor a while ago and she seems quite upset and

not really sure what to do at this point. Our thoughts are now that

he must be admitted to see if perhaps an IV steroid might absorb

better and give him a kick start to recovery. I personally believe

that she is grasping at straws, but the only ones that she can find.

I live in the Boston area and with so many doctors available, it

seems as though someone must be able to help. He is seen at

Children's Hospital, but they don't seem to have anyone other than

his GI doctor to help him. Does anyone know of someone that I could

speak with that might be able to offer some help to the doctor

here? I feel like I'm waiting around and doing nothing to help my

little boy.

Thanks.

---------------------------------

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October 29, 2006

Just an update on my son. He went into the hospital on Thursday and

has been getting solumedrol by IV and things are starting to turn

around. A liver ultrasound showed some reflux in the vessels, but at

this point it looks as though it is just minor. His labs are already

starting to look better and they are considering the long term plan

now. Looks like a combination of prednisolone and imuran for now, but

not sure yet. We hope he'll get out in time to enjoy Halloween with

his siblings.

Thanks to those that responded. Really, it's nice to know that we

aren't alone.

October 30, 2006

>

> Just an update on my son. He went into the hospital on Thursday and

> has been getting solumedrol by IV and things are starting to turn

> around. > That is the best news ! How happy

and reassured you must be now. Such a relief when there is an answer

and treatment....please stay with us and share as things continue.

Glad you found us. Not being alone makes our journey much easier.

Joanne

November 6, 2006

My son was released from the hospital on Friday. His LFTs, PTT and

Bilirubin were all improved. He is still on 30 mg prednisone per day,

but he is also now on Imuran. Hopefully, they will reduce the

prednisone in a few weeks.

Because he has never been on imuran, I was wondering if anyone out

there could tell me a little about the side effects that you have

experienced. He is only 4 years old, so it is unlikely that he will

let me know how he is feeling (he is developmentally delayed because

of all of his past medical issues). I would just like to keep in mind

what others have experienced.

I have read the pamphlet and have some ideas of side effects, but

would rather hear it from someone that has personal experience.

Obviously, at this stage, I'm anxious for him to be able to get off

steroids. He is so small for his age and now he's been on prednisone

for over a year and a half.

Thanks.

November 6, 2006

The only side effect I have had from Imuran is a little nausea for the first

month I started taking it. Once my body adjusted, I have no side effects at

all! It is a godsend. I would recommend that he take it after a meal, to

minimize the nausea from digesting it.

In a message dated 11/6/2006 5:53:40 P.M. Central Standard Time,

ktellier@... writes:

Because he has never been on imuran, I was wondering if anyone out

there could tell me a little about the side effects that you have

experienced. He is only 4 years old, so it is unlikely that he will

let me know how he is feeling (he is developmentally delayed because

of all of his past medical issues). I would just like to keep in mind

what others have experienced

November 7, 2006

Hi -- my son was on imuran at age 6. He had no side effects directly

attributable to the drug. The doctors discontinued it after a year or

18 months, saying they were concerned about long-term developmental

effects. But I never saw evidence of anything. It was certainlly less

problematic than prednisone.

He became symptomatic at age 4, too. Wacky LFTS, inconclusive biopsy.

It took two years for him to be diagnosed with primary sclerosing

cholangitis.

My son is also developmentally delayed, has a spectrum of medical

issues beyond the liver, and is small for age. I'm happy to talk about

any of these issues with you.

The research says that liver kids catch up with their peers, size-wise,

after tx. I haven't seen that.

Pam

(mom to Quantell, 16, dx PSC 1996, tx 2001, dx PSC recurrance with AIH

overlap 2006)

November 7, 2006

Interesting. I haven't had much luck finding anyone with a child with similar

issues. I'm not even sure what his exact diagnosis is at this point.

Originally, it was his kidneys that were being affected by AI, but now it seems

to have decided to leave those alone and head for the liver. He has been tested

for a multitude of ai diseases, but nothing comes back positive. It's very

frustrating.

Thank you for letting me know about your son. Can you tell me what life is like

for your son? I've been curious as to how other peers might treat him as he

grows up. From looking at him, other than his size, he really doesn't look any

different from anyone else, although he still has a feeding tube and serious

scars to prove his medical history (but those are mostly hid underneath his

clothes).

I would love to hear your thoughts.

[ ] Re: Admission to Hospital

Hi -- my son was on imuran at age 6. He had no side effects directly

attributable to the drug. The doctors discontinued it after a year or

18 months, saying they were concerned about long-term developmental

effects. But I never saw evidence of anything. It was certainlly less

problematic than prednisone.

He became symptomatic at age 4, too. Wacky LFTS, inconclusive biopsy.

It took two years for him to be diagnosed with primary sclerosing

cholangitis.

My son is also developmentally delayed, has a spectrum of medical

issues beyond the liver, and is small for age. I'm happy to talk about

any of these issues with you.

The research says that liver kids catch up with their peers, size-wise,

after tx. I haven't seen that.

Pam

(mom to Quantell, 16, dx PSC 1996, tx 2001, dx PSC recurrance with AIH

overlap 2006)

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November 7, 2006

At the risk of sounding totally hokey -- Life with Quantell is a

tremendous gift. Despite (or maybe because) of everything he's gone

through, he radiates joy.

There have been bumps -- in preschool other kids wouldn't hold his

hand because part of it had been amputated (following an IV incident)

and he gets his share of stares and glares -- also has a G-tube and

many scars, including visible ones on his face and arms. Plus he has

hearing aids (side effect of tx meds), a protruding bile stent, and

until recently knee-high AFOs. He wore diapers until age 11. And,

just to make things more interesting, we're a bi-racial family.

None of it bothers him. He's exceeding comfortable in his own skin.

I have added extra layers of protection by always putting him in

private schools. And, because he is quite small, as well as DD, he's

been placed developmentally, rather than with same-age peers. So this

year, for example, instead of being in the jungle of an inner-city

public high school, he's in sixth grade at a small, everyone-knows-

your-name elementary school.

I've also made it a point to enroll him in special rec programs and

camps where there are other kids with disabilities and chronic

medical issues, and where sometimes he's even the highest functioning

one.

He knows -- the the extent he can -- about his various illnesses.

He's been to the funerals of young friends. And in some ways, he's

sophisticated and mature. At parent-teacher conferences, they gave me

a heads-up about an upcoming unit on death. I ventured that it

wouldn't upset Q, and in fact, when I asked him about it, he grinned

and said " I can tell the kids all about that. "

Many times I wish life wasn't so hard for Q -- that he didn't get

fatigued walking from the bus stop, that attending a consecutive week

of school would be routine instead of momentous. But I don't wish he

was someone else.

I can sympathize with your search for a dx. That is indeed, a

frustrating place to be.

For online resources, you might be interested in OUR-KIDS, a HUGE

group for parents of kids with disabilities, both common and rare.

http://www.our-kids.org/

and/or MUMS (Mothers United for Moral Support), which also does a

newsletter and has a lot of folks still searching for a diagnosis

http://www.netnet.net/mums/index.htm

Off-line, I strongly recommend looking for your local chapter of

Starlight-Starbright. This group is one of the few that specifically

targets kids with chronic illnesses, and they have some marvelous

programs.

http://www.starlight.org/

Hope this helps. Don't hesitate to ask anything.

Pam

(mom to Quantell, 16, dx PSC 1996, tx 2001, dx PSC recurrance w/AIH

overlap 2006)

November 7, 2006

Pam...you are a totally awesome Mom! That more Moms should feel as you do. You

have been given a gift with Quantel! We too have a child in our family with

Downs symdrome...and biracial...but you know what? She is the blessing of our

LIVES! She is my great niece but she is the love of our lives!

Interstinly enough, she expresses the same concerns that she wishes school was a

breeze like it is for the other children...BUT she is totally dedicated to

little Quincey.

Thank you for sharing your joy...for truly your son is your joy. Nothing can

take away the pain you feel at his struggles, but your pride at his

accomplishments! Thank you for making my day!

Debby