Re: re: hello... a few questions

[Guest guest]

Hello Michele,

Thank you for the link and the welcome. My son does not look much like the

CHARGE kids on the site. His eyes seem to have the same movement problems

but the deformity of his chin and jaw are not similar. I guess I am

grasping at straws to find out if my son's cluster of disorders have a name

or if they are just a big coincidence. Many of his birth defects occurred

around the 7th week of gestation, when I had a serious sinus infection and

was taking a lot of medicine and antibiotics. (I was so sick that I didn't

realize I was pregnant until my 7th week!) But doctors have not been able

to say that any of the medications could have caused the defects. My son is

now five and with each diagnosis of something new (most recently the

learning disabilities and possible ADD) I just really feel that there must

be an explaination. With his other issues, I have found that information

from parents on list serves like this one have been a wealth of help.

Thanks again for the welcome.

Robin

>

>Reply-To: CHARGEegroups

>To: CHARGE-List <CHARGEegroups>

>Subject: re: hello... a few questions

>Date: Thu, 20 Jul 2000 13:37:19 -0500

>

>Robin--

>My daughter, Aubrie, was diagnosed by a geneticist. The CHARGE

>diagnosis can be difficult. It cannot be made by genetic testing

>because the gene has not been isolated. It must be diagnosed by

>clinical symptoms. We are fortunate to live near Meg Hefner, a genetic

>counselor who is involved with the CHARGE Foundation and one of the most

>knowledgeable people about CHARGE. She recognized Aubrie's ears as

>CHARGE ears as soon as she saw her. That was helpful to me because our

>geneticist had given the diagnosis of " probable CHARGE " which left

>questions in my mind. Meg is on the list-serve, so perhaps she will be

>able to respond with some guidance for you.

>

>It might be of help to you to look at the KidPix page of Casey's website

>to see if your son resembles the other children. I'm sending the

>webpage to you in a separate email. Since you're on hotmail, I'm not

>sure if you have internet or not.

>

>Good luck in finding answers. Please know that you are welcome in our

>CHARGE family even if your son does not have a CHARGE diagnosis. If we

>can be of help and support to you, then please stay with us.

>

>Michele W

>mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL

>west@...

>

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[Guest guest]

on 7/20/00 7:17 PM, robin xyz at robin0rrb@... wrote:

> Hello Michele,

> Thank you for the link and the welcome. My son does not look much like the

> CHARGE kids on the site. His eyes seem to have the same movement problems

> but the deformity of his chin and jaw are not similar. I guess I am

> grasping at straws to find out if my son's cluster of disorders have a name

> or if they are just a big coincidence. Many of his birth defects occurred

> around the 7th week of gestation, when I had a serious sinus infection and

> was taking a lot of medicine and antibiotics. (I was so sick that I didn't

> realize I was pregnant until my 7th week!) But doctors have not been able

> to say that any of the medications could have caused the defects. My son is

> now five and with each diagnosis of something new (most recently the

> learning disabilities and possible ADD) I just really feel that there must

> be an explaination. With his other issues, I have found that information

> from parents on list serves like this one have been a wealth of help.

> Thanks again for the welcome.

> Robin

>

>

>>

>> Reply-To: CHARGEegroups

>> To: CHARGE-List <CHARGEegroups>

>> Subject: re: hello... a few questions

>> Date: Thu, 20 Jul 2000 13:37:19 -0500

>>

>> Robin--

>> My daughter, Aubrie, was diagnosed by a geneticist. The CHARGE

>> diagnosis can be difficult. It cannot be made by genetic testing

>> because the gene has not been isolated. It must be diagnosed by

>> clinical symptoms. We are fortunate to live near Meg Hefner, a genetic

>> counselor who is involved with the CHARGE Foundation and one of the most

>> knowledgeable people about CHARGE. She recognized Aubrie's ears as

>> CHARGE ears as soon as she saw her. That was helpful to me because our

>> geneticist had given the diagnosis of " probable CHARGE " which left

>> questions in my mind. Meg is on the list-serve, so perhaps she will be

>> able to respond with some guidance for you.

>>

>> It might be of help to you to look at the KidPix page of Casey's website

>> to see if your son resembles the other children. I'm sending the

>> webpage to you in a separate email. Since you're on hotmail, I'm not

>> sure if you have internet or not.

>>

>> Good luck in finding answers. Please know that you are welcome in our

>> CHARGE family even if your son does not have a CHARGE diagnosis. If we

>> can be of help and support to you, then please stay with us.

>>

>> Michele W

>> mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL

>> west@...

>>

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

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

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

>

> For information about the CHARGE Syndrome

> Foundation or to become a member please

> contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

If it's any consolation, we did not arrive at a diagnosis of CHARGE until

our daughter was - oh my, perhaps 12 or 13. Even then, our focus was

getting the educational services she needed because of the various problems.

I think it imperative that every parent search, search, and search. No one

dropped the CHARGE diagnosis in our lap --- no one said that the child was

deafblind. I had to hunt and hunt. I still hunt. I don't know where you

live, but we're in a city of roughly 200,000, and our doctors simply could

not make the diagnosis. These are good, caring people, but we were left

primarily on our own for a long time. We didn't have a CHARGE list serve

when our child was younger, but hopefully the people on this list can help

lead you in appropriate directions. It's a battle, but getting the right

information will ease things considerably.

[Guest guest]

Could you send that web site number of Casey's? I would like to see the

pictures to see if Brad looks similiar. Thank you. tkrencick1@...

[Guest guest]

It's

http://www.geocities.com/Heartland/1220/kidspix.html

Casey

Mom to Dawn 21 HH, Ken 11 ADHD, 8 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

I sent it to your private email.

Michele W

mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL

west@...

TKRENCICK1@... wrote:

> Could you send that web site number of Casey's? I would like to see the

> pictures to see if Brad looks similiar. Thank you. tkrencick1@...

>

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

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> If not, check this site out.

> They're called CarsDirect.com and it's a pretty sweet way to buy a car.

> http://click./1/6847/2/_/22564/_/964184474/

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

>

> For information about the CHARGE Syndrome

> Foundation or to become a member please

> contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org