Re: We're new here!

[Guest guest]

I'm Patty's mom. She is 14 and was diagnosed recently. She has or had all

the things other CHARGE kids had except a treach. It was hard when she was

little with so many illnesses, surgeries and a few of those life threatining

scares. People, teachers and doctors, told us horrible things about her

future but we knew different. She is doing great now and is entering high

school in Sept. There are still issues to worry about but we are in for

whatever it takes.

Being diagnosed with CHARGE I was happy she finally had a name. It also

made us look further and they found a PDA instead of the murmor they thought

she had. Finally fixed it last year. Also, she entered puberty but stopped.

They thought I was silly but she FINALLY saw and endocrenologist and found

she needs help with that.

I thought I had everything under control. Then I went to this

conference. It was the best, most wonderful thing that has ever happened to

my entire family. I learned so much more about my daughter. I also learned

theres more for us to do and to look at. I know now that she is not the only

stubborn person around! This stubborness gets her through much though. I

enjoyed the break out sessions and also meeting all the other families. For

years we were alone. When I came down for the first meeting I was totally

overwhelmed! Every where I looked I saw my daughter when she was a baby. It

was amazing how all the other children looked like my daughter, my little

angle. I also saw my husband and I in the other parents. We were accepted

at once, quite lovingly. Now we are not alone. I am proud to be a parent of

a CHARGE person. Though we are new here we felt right at home.

Now, this. I have been reading everything and found some interesting

ideas on how to deal with doctor issues. Also, I wish for other parents to

know it has gotten easier for us as she has gotten older. She is not as ill

anymore and needs fewer surgeries....I also want others to know it has been a

struggle for us to keep her in regular education with special services, such

as a one on one. It seems it is easier to tell us she needs to be in

contained classes for different things. I hold high expectations for her yet

educators sometimes don't. Patty has always surpassed what people would say

she would accomplishe. I guess I'm saying to never give up on your children.

They often surprise everyone!

We still have issues though. We wonder what the future will bring. We

also continue to have issues with the medical professionals. When we went to

an orthopedic specialist the day after we came home, I showed him some of the

papers on CHARGE. He said he heard of it but it IS NOT a syndrome but most

likely she has something else. I think he said VETER syndrome? (Patty has

all the characteristics of CHARGE and many of the monor characteristics too)

What tires me the most is dealing with people like this. Needless to say we

won't be going back to him.

Anyway, I thank all of you. Even if we didn't meet each other, the

entire confrence was as though we were family. I also thank you for writing

to each other. This is the best thing that's happened to us in a long time.

[Guest guest]

Hi Patty's Mom (I'm sorry I didn't get your name),

Thank you for writing. My is 7 and I really appreciate hearing both

from the older Chargers and their parents.

Thank you for sharing!

Janet

Wife to Matt

Mom to Many

Weymouth, Massachusetts

I have a homepage on AOL, it's pretty lame right now, I just started.

http://members.aol.com/jpm4189/page/index.htm

[Guest guest]

In a message dated 99-07-29 20:01:58 EDT, you write:

<< He said he heard of it but it IS NOT a syndrome but most

likely she has something else. I think he said VETER syndrome? (Patty has

all the characteristics of CHARGE and many of the monor characteristics too)

What tires me the most is dealing with people like this. Needless to say we

won't be going back to him. >>

Hi, Patty's mom,

Don't you just hate doctor's ignorance!!!! I am so glad you are not going

back to him. My pediatrician has such a " superior attitiude " yet when I walk

in the room, I AM the SUPERIOR one, because I know more about CHARGE than he

does. I think it puts a blow to his ego, but I have learned to love to put

him in his place. He also treats me like gold now. As he better!!!!

Foley,

Mom to 4 in Aug , CHARGE angel in heaven and Jillian 16 mon.

cHaRGE

[Guest guest]

-

From: TURK22082@...

This is the best thing that's happened to us in a long time.

Welcome to this list,I read more than I write, but I was so thrilled for you

that after so long you finally have some answers and now a great support.I spent

the first year of my daughters life feeling alone,With rgards to her medical

problems, I can't imagine 12 years.Look foward to reading more of your storie

and the wisdom that comes along with it.

,Mom to (41/2)Kaitlynn(3 next week) and (18 months)Charge

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

[Guest guest]

The confrence was fantastic for us but now we are back to reality. Patty

(CHARGE) went into puberty three years ago but stopped, won't menstruate. I

asked and asked if someone would look into it. Kept being told " not to worry

about it. " Finally, after much insistance they found she WILL NOT menstruate

on her own. She has high prolactin. Eithor because of ovarian problems,

pituitary tumors-not bad, or that she takes Risperdal. Went for ultrasound

today, they found her uterus is normal and found her left overy. Couldn't

see theright because of " gas.' I asked and was told they develop in utero at

same time as eyes and ears. I then questioned if she has a problem with

everything she has two of, eyes- both with colobomas, ears- sensory neural

and conductive, nose-coanal atresia, kidney reflux and atropic,..all one

worse than the other, why not her overies. I was passed off like I was

silly. They told me you only need one anyway. By the way they made her drink

4 10 oz glasses of water. She hardly complained. I found that remarkable.

I would have been quite uncomfortable.

Next was an MRI for the pituitary. She was given a dye. She HATES

needles but other more painful things she could care less about. At almost

15 they still have a hard time getting through the viens. We'll see what the

results from that are.

Also, lately she again won't eat most meat. Says its hard for her teeth

and mouth. Sometimes rubs her neck to " make it go down. " She seems to be

messy when she eats again. That hasn't happened like this in a few years.

She takes such large bites.

Then there is the decision about her shoulder and the surgery. She says

it hurts sometimes.

Finally in two weeks is the meeting for her in school. She was tested

FINALLY at Perkins, they are great. We had the meeting in June,

teleconfrence. After those in Perkins read the results and hung up, those in

our district said they had to review all the infromation to decide on the

recommendations and we would reconviene in Aug. She is transitioning into

high school. They are deciding on her IEP after school is in session. Man

she has a hard time transitioning anyway. Last time she transitioned from

4th to 5th she didn't continually have a functioning FM Unit till Dec. They

make too many mistakes.

I am getting tired of fighting people who should have more knowledge than

they do and I am tired of the fact most won't listen to us though we

understand and know more from experience. Guess we are feeling alone again.

This child is a remarkable person who should be viewed as such.

We are continually told what is wrong with her or what she can't or will

not be able to do. She ALWAYS has succeeded above and beyond expectations.

Don't give up on your children. Go with a mothers intuition. Follow your

childrens lead.

Guess we'll have to fight for her, always. Too many jerks out there.

[Guest guest]

In a message dated 99-08-09 22:47:45 EDT, you write:

<< Go with a mothers intuition. Follow your

childrens lead.

Guess we'll have to fight for her, always. Too many jerks out there. >>

AMEN !!!!!!!!!!!!!!

Foley

mom to 4 next week, CHARGE in heaven and Jillian 16 1/2 mo

w/cHaRGE

[Guest guest]

Needed to add something here. Yes , I know right were you are coming from.

Just about the time you think the road is

loosing some of the hills the hills become mountains. What I have found though

is no knows your child better than we do

as parents and no one will fight for them like we will. The rewards will come

though. We are on our way to having a deaf

home for that himself is helping to create and make the decisions

about. He's getting to choose who he wants

to live with, where he wants to live, and be able to monitor the level of

signing capabilities of all support people.

They already have people who are deaf themselves to be support people for the

home. I'm sure their are still going to be

hills but none that we can't get over together.

Vicki mom to (23)

JFoley6163@... wrote:

> From: JFoley6163@...

>

> In a message dated 99-08-09 22:47:45 EDT, you write:

>

> << Go with a mothers intuition. Follow your

> childrens lead.

> Guess we'll have to fight for her, always. Too many jerks out there. >>

>

> AMEN !!!!!!!!!!!!!!

> Foley

> mom to 4 next week, CHARGE in heaven and Jillian 16 1/2 mo

> w/cHaRGE

>

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

[Guest guest]

Hey Bonnie, Sounds like things are crazy in your life!!! I just wanted to

let you know that I think of you guys and love seeing a message from you!!!

Patty is such a sweetheart and yes you do have a great young adult! I have

also been on the phone bitchin' at people for Hannah's sake!!! Sometimes it

helps. It usually takes many,many calls to get an answer tho!!! Keep your

chin up. I sent you some info in the mail about Spregglers or whatever you

call it!!!!! See ya...Tell Patty I said hello!!!!

>From: TURK22082@...

>Reply-To: CHARGEonelist

>To: CHARGEonelist

>Subject: Re: We're new here!

>Date: Mon, 9 Aug 1999 19:48:14 EDT

>

>From: TURK22082@...

>

>The confrence was fantastic for us but now we are back to reality. Patty

>(CHARGE) went into puberty three years ago but stopped, won't menstruate.

>I

>asked and asked if someone would look into it. Kept being told " not to

>worry

>about it. " Finally, after much insistance they found she WILL NOT

>menstruate

>on her own. She has high prolactin. Eithor because of ovarian problems,

>pituitary tumors-not bad, or that she takes Risperdal. Went for ultrasound

>today, they found her uterus is normal and found her left overy. Couldn't

>see theright because of " gas.' I asked and was told they develop in utero

>at

>same time as eyes and ears. I then questioned if she has a problem with

>everything she has two of, eyes- both with colobomas, ears- sensory neural

>and conductive, nose-coanal atresia, kidney reflux and atropic,..all one

>worse than the other, why not her overies. I was passed off like I was

>silly. They told me you only need one anyway. By the way they made her

>drink

>4 10 oz glasses of water. She hardly complained. I found that remarkable.

>I would have been quite uncomfortable.

> Next was an MRI for the pituitary. She was given a dye. She HATES

>needles but other more painful things she could care less about. At almost

>15 they still have a hard time getting through the viens. We'll see what

>the

>results from that are.

> Also, lately she again won't eat most meat. Says its hard for her

>teeth

>and mouth. Sometimes rubs her neck to " make it go down. " She seems to be

>messy when she eats again. That hasn't happened like this in a few years.

>She takes such large bites.

> Then there is the decision about her shoulder and the surgery. She

>says

>it hurts sometimes.

> Finally in two weeks is the meeting for her in school. She was tested

>FINALLY at Perkins, they are great. We had the meeting in June,

>teleconfrence. After those in Perkins read the results and hung up, those

>in

>our district said they had to review all the infromation to decide on the

>recommendations and we would reconviene in Aug. She is transitioning into

>high school. They are deciding on her IEP after school is in session. Man

>she has a hard time transitioning anyway. Last time she transitioned from

>4th to 5th she didn't continually have a functioning FM Unit till Dec.

>They

>make too many mistakes.

> I am getting tired of fighting people who should have more knowledge

>than

>they do and I am tired of the fact most won't listen to us though we

>understand and know more from experience. Guess we are feeling alone

>again.

> This child is a remarkable person who should be viewed as such.

> We are continually told what is wrong with her or what she can't or

>will

>not be able to do. She ALWAYS has succeeded above and beyond expectations.

>Don't give up on your children. Go with a mothers intuition. Follow your

>childrens lead.

> Guess we'll have to fight for her, always. Too many jerks out there.

>

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