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CAHsupport · This list is dedicated to the support of family members with Congenital Adrenal Hyperplasia and related disorders. We welcome
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Re: Welcome to CAHsupport@onelist.com   Message List  
Reply | Forward Message #62 of 242 |
Re: Welcome to CAHsupport@onelist.com

Hi Angi & CAH friends!

My name is Diane I have been married for 13 years to a great guy (Denny)! We
have 2 beautiful children, Brandi 10.2 and Charlie 5.3.
Charlie was diagnosed Feb. 12, 1998 with CAH. We are now all in genetic
research to find the mutated gene(s).
I have questioned many things with Charlie since he was born. I was
basically told I was over reacting, paranoid, over protective mom, ect.
Finally at his 4 year check up a new woman doctor in the group listened to my
concerns and started with a bone age! She called me that night from home to
say she made Charlie an appointment with an endo and to go to get further
testing. I was numb from then on. As I said diagnoses of CAH came in
February 1998 and in June (30th to be exact) he was diagnoses with CPP
(central precocious puberty).

His ped's now are very reluctant to even see him. (They did say in Sept.
1998 how lucky we are he is still here and can't believe that it wasn't
worse! I am in the process of changing his ped's) I have since changed his
endo to one at Children's Hospital in Pittsburgh, PA. I was going into the
1st endo's with more info. than he had ever given me and he told me to let
him know what else I can find out! I had to tell him how to write the
prescription for the solu-cortef and he wanted to take Charlie off of the
Lupron all together because Charlie had rare complications to the Lupron
Depot injections. (It's a very long story and I don't want to bore anyone
with my 1st message!)

It is now May 1999 and I still feel that I need more information. I am more
comfortable with CAH & CPP (or so I want to think.)

We have had to do the stress shot and in the ER for dehydration. Charlie has
had a pretty tough winter but I feel confident in his endo and what we are
doing.

Charlie's last ando. test and testosterone both came back good.....he is
suppressed finally! It took more than a year but I feel we have succeeded in
a small way.

His last bone age was 9.64 years at cron. age of 4.8 years. We are waiting
the results of his bone age in Jan. 1999. The hospital read it as 12.4 years
so his doctor sent it to a special lab in Chicago, IL.

I would like to thank Angi (& family) for a this list and I hope that I can
help others with my experiences and would love to here from others. I would
also hope that we can get newborn testing in every state!

I would like to hear if anyone else has a child with CPP also. This seems to
complicate CAH. I am also told by doctors that it is very rare for a child
as young as Charlie to have CPP, it usually doesn't happen (if it is going
to) around the age of 9/10.

Thanks for the warm welcome...I'm glad we are aboard....Diane





Tue May 4, 1999 1:38 am

DTomb78532@xxx.xxx
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Message #62 of 242 |
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Hello- I look forward to chatting in this format. I have a CAH website and was considering adding another message system like this and...low and behold!! ...
Jim Watson
jrwatson@xxxxxxxxx.xxxx
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Feb 26, 1999
2:39 pm

Hi Angi & CAH friends! My name is Diane I have been married for 13 years to a great guy (Denny)! We have 2 beautiful children, Brandi 10.2 and Charlie 5.3. ...
DTomb78532@xxx.xxx
Send Email
May 4, 1999
1:38 am

OK....this may be a dumb question,,,,,, What is the difference between Precocious Puberty and an undiagnosed CAH child who shows early signs of puberty due to...
Jim & Debbi Watson
jrwatson@xxxxxxxxx.xxxx
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May 4, 1999
2:00 am
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