Congenital Adrenal Hyperplasia.. ?

[Mandi]

Just wondering if anyone has ever heard of this or do you know someone who has it... Sam's been diagnosed and there doesn't seem to be any support groups in Brisbane and I really don't know what to expect with it.

We have an appointment with an endocrinologist on Monday for more tests to confirm diagnosis but all the research I've done really only tells me the clinical side, not how it actually affects a person. I know I'll find out more on Monday from the doc but I'd like to be prepared before we get there.

[jenr]

Wasnt there a lady on here who has just her child diagnosed with the same thing?
Sorry Mandi I cant remember who it was?

[Heather]

Sounds terrible......did the Doctor not give you any indication of the affects?

[Mandi]

Not sure Jen, nothing came up in a search I did Heather the doc told me what the condition does to the body but not how people with it react to medication etc.. I know what it means to have it but don't know what to expect from the treatment. Given that Sam also has AS and ADHD adding a bout of steroids to his system is kinda scary....

[jenr]

Mandi sorry I bumdrummed you! I found it was Mel 76 her little girl has Mild Aspergers Syndrome.
Sorry about that

[Mandi]

Mandi sorry I bumdrummed you! I found it was Mel 76 her little girl has Mild Aspergers Syndrome.
Sorry about that

You bumdrummed me! what the bugger is that? And should I be scared?? hahahahahahaha

[jenr]

Be very afraid of getting bumdrummed!

[Cherie]

It means she gave you the drum.. but it was a bum steer..

[Stormy]

Mandi the only suggestion I can think of is contacting the Royal Brisbane Children's Hospital and asking if they know of any support groups in the region. I've never heard of it before.

[miss kiki]

i hope you get the information you need!