Re: Hi! We're new to the list...

November 13, 1998

, and Josh

Welcome to the list. You have definately been through ALOT. You will find

that this is going to be such a good place to come. Everyone on this list is

WONDERFUL!!! My daughter Saleah will be 6 mo. on Wednesday and was diagnosed

with CHARGE at birth. Sometimes I feel if it weren't for all the " Friends "

I've made on this list, I may go crazy.

Again, welcome...

Kim

mom to Devin 7 3/4 yrs. and Saleah almost 6 mo. (CHARGE)

November 14, 1998

Hello Breda,

Welcome to the list.I'm sure you will find it a great source of information

and support.

I personally couldn't live without it. It's very addictive and everyone is so

friendly and helpful. I feel as if I have made so many friends here on the

list even though I have never actually met them.

sounds adorable and you seem to have been through so much in the last

21mths. I really hope things start improving and those wonderful smiles and

giggles become more frequent.

It's really encouraging that loves chewing on his hands. My son Jack

who is 16mths and totally orally fed never,ever puts anything in his mouth.He

doesn't even grab the spoon when you put it in his mouth.He's much more likely

to push it away.

We're working on the tactile defensiveness but it's a very slow progress.

Good luck with the surgery on 2nd Dec.

Elaine mum to Elise(6yrs) & Jack(16mths)CHaRGE

Dumfries, Scotland

November 14, 1998

,

Josh sounds like an absolutely precious boy!!!!!!! Where and when

were you given the diagnosis.

Voight

Mom to Mark 15

Flushing, MI

November 14, 1998

Welcome , & . sounds like a wonderful little boy,

we're glad to have you all on board.

Trish, mom to Oran (27months) ChaRge, wife to Tim

Atlanta, GA

At 09:49 PM 11/13/98 EST, you wrote:

>From: Blsinma@...

>

>Hi Everyone,

>

>My name is Southard, and I'm new to the list. My husband and I

>have a 21 month old boy, , diagnosed with CHARGE.

>

>I'll try to some up his med problems quickly...

>He doesn't have colabomas but he does have small optic nerves and has some

>vision deficiencies. His " H " involvement consisted of an ASD, 3 small VSD's

>and a PDA. The PDA was coiled and the rest took care of itself over time.

> " A " : supposedly had a right choanal atresia that was membranous: when

>docs ran a tube down his nasal passage they retrieved a bloody mebrane and

>assumed it was an atresia. He's very delayed in his development: he's really

>not reaching out consistently, but it seems like some of his batting out is

>intentional. He also has the Lights and Sounds as well as the Sesame Street

>gym. He ends up batting them as the figures get in the path of him bringing

>his hands to his mouth. He loves to suck on his hands...and if it weren't for

>his thumbs, he'd have them down his throat! Sometimes he'll track beatifully

>and others not. He started tolerating prone position towards the end of his

>first year, but he still doesn't have the strenghth to push up. We're working

>on weight bearing in a sit position, and he's using a stander. But progress

>over the last year has been minimal-partly due to sickness and surgeries...

>'s height and weight are in the 10th%ile. " G " : He has small genitals

>and he had bilateral hernias and hydrocyle repaired. " E " : is

>profoundly deaf. He also had severe reflux, and docs repaired a " striking "

>hietal hernia and did a fundo and G-tube placement at 3 weeks old. He's

>always been G-tube dependant, but for the first year of his life, he ate small

>amounts by mouth - thikened foemula through a bottle, and stage one baby food.

>

> also has a few other problems our docs have never heard of in CHARGE

>kids...He has infantile polycystic kidney disease - thousands of microscopic

>cysts that docs say will eventually cause his kidneys to fail (but they're

>doing fine for now, thank God...He's on med for high BP, though) aAnd he had

>an arachnoid cyst on his left temporal lobe of his brain. Over the first year

>of his life the cyst grew from the size of a pea to about a lemon, and it was

> " smooshing " his brain. He had surgery to destroy the membrane, but the fluid

>didn't drain, and they had to go back in to place a shunt. also has

>gall stones, and he's having surgery Dec 2 to take the gall bladder out.

>

>Josh also had infantile spasm seizures at 6 months. We did ACTH, and they

>went away, only to be replaced with " blue seizures " where he'd stare and drop

>his O2 SATs anywhere from 10 secs to 2 mins. went away after 10 months, and

>now he's having tiny seizures that only last seconds.

>

>This past year, Josh started having aspiration pnemonias even after he became

>NPO. He's on Flovent Inhalation med to lessen secretions, and it works well.

>The secretions aren't as bad and he's not too dry, and our pulmonologist has

>us adjust the dose when we feel he's extra junky or when we're battling a

>pneumonia. I had always been agressive with PO feeds, but this year has set

>us back tremendously, and I'm afraid he's lost any skill he had at swallowing.

>Sometimes we wonder about that brain surgery... Josh used to laugh a little

>every once in a while in the latter part of his first year, but we haven't

>heard a laugh since the surg (the day after his first birthday). Just in the

>last few months were seeing more little smiles, but nothing like we used to.

>Feels like were going in reverse sometimes...

>

>But Josh is the sweetest little boy in the world. He's pretty content unless

>in pain. And he knows and I and communicates in his own way with looks

>and " sqawks " . We absolutely adore him, and I know he feels loved, and he

>loves to cuddle...

>

>Sorry so long! Thanks for " listening " . I'm so happy to have this list as a

>resourse and support.

>

>God Bless!

> Southard, wife to and mom to Josh (21 mo)

>Glouster, MA

>

>------------------------------------------------------------------------

>

November 14, 1998

: Welcome to the list serve, Please feel free to ask anything, or any

topic that is of interest and also Please feel free to respond to anything

here it is a wealth of information for CHARGE Parents. God bless you anr

your family and remember not to give up hope and keep asking questions.

Rick Ogan