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:hug:

[Mandi]

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

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

[jenr]

Be very afraid of getting bumdrummed!:hehe:

[Cherie]

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

[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. :dk:

[miss kiki]

i hope you get the information you need!

[Heather]

Have you thought about joining this support group (http://www.congenitaladrenalhyperplasia.org/). I know it is UK based, but they do have an Australian section or message board. I'm sure someone there will be able to give you first hand experience.

I have a young friend who has been on steroids for a Kidney condition, on and off since early school years.....I have to tell you it has been a trial for family, friends and teachers.

I'd also start right now seeing what you would have to do to get him extra support at school.

:hug:

Just found an Aussi CAH group http://www.cah.org.au/

[Mandi]

Thanks for that support group site Heather. That one didn't show up in any of my searches :D and yep, I'm expecting his treatment to be a trial, what would my life be without them LMAO

The other site you mentioned (cah.org.au) is pretty much useless as none of the tabs have any info on them it's like the site was set up then forgotten about :roll:

[Heather]

Yes unfortunately......support groups are very often founded by those with a strong commitment but as is usually the way, life gets in the way and others are not so willing to carry on the good work.