Anyone have kids with CAH?

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Medic - posted on 11/20/2011

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Does your child have Addison's Disease? I am asking because I believe CAH is an underlying condition to that. I don't think it is funny either and think that people in the health profession should show some compassion. Do you have a girl or boy? From what I know its effects are more apparent in girls than boys. Sorry I am asking so many questions, I am a paramedic so I only have limited knowledge on conditions that usually do not present as life threatening like RN's and Dr's see.

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Kathleen - posted on 04/10/2013

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Hi Kathleen here! I just joined Circle of Moms! But I also wanted to comment that I also have a beautiful little girl, Paisley with CAH. We found out shortly after she was born and was sent to Children's Mercy. We were separated for the first 5 days of her life. It has been a roller coaster ride since then. She is now 17 months old and I can say with a child with these special needs life can be really tough at times. Having a child is life changing and very challenging but having a child with unexpected conditions puts life at a completely different level. So I agree,compassion is appreciated beyond words.

Alexandra - posted on 12/14/2012

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My kids don't have it, but I do.
It is a "forever" condition, your kid has to be on medication all his life. It can create infertility in girls if not treated, and in boys there is a possible serious side effect if he has to take prednisolone. You just have to ask the questions to your pediatrician. There are several stages and types of CAH and the medications depend on those differences. I have had to take different ones on different ages of my life too - dexamethasone, prednisolone, methylprednisolone, hidrocortisone.
It is not a bad thing, you just have to make sure to give the meds everyday.

Arelys - posted on 12/14/2012

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My son was diagnosed with CAH, once he had the newborn screening done. He has the salt wasting kind. The worst kind. He takes two kinds of steriods all throughout the day, and sodium chloride in his feedings. I would love someone to talk to as well. Dr's and nurses all tell me as time goes by, and my baby gets bigger, it will get easier. I pray that is the case. It has been extremely hard accepting that my baby boy has to be on medicine for the rest of his life. However i am thankful, that besides his condition he is a healthy boy. Any questions you may have or even if you want to chat, please don't hesitate. Take care.

Michelle - posted on 11/22/2011

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Yes, my son whose now 11 years old has had it since birth. Through a wonderful peadatrician we've got his meds under control, although he has to have a blood test once a month for this. He lives a fairly normal life. But it is still always there - he can't play any contact sports like tackle football etc and he can't get broken bones or any major body shocks to his organs but we live with it!!!

Jennifer - posted on 11/22/2011

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Yes, I have had to give Brady, my son, 2 shots. One when he was about 6mo old because he had a stomach virus and couldn't keep his oral meds down and once when he was 6 because he was playing on the bed and feel off and busted his head open. But besides that he has had a fairly normal life. To look at him you wouldn't know he had anything wrong unless I told you. Thankful for his Dr and being able to keep his meds regulated!

DeLaina - posted on 11/21/2011

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have you had to give him a shot yet? and is there anything else wrong with him like my friends baby has bouts disease becuz of him being over weight..and I just like to know what could or could not get later in life

Emma - posted on 11/20/2011

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I'm the same,had to Wikipedia it. I've heard of it but didn't realise that's what it was called.

Sharlene - posted on 11/20/2011

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First of all , I was'nt making fun off ,I have never heard of that disease before lets make that clear until now,have you looked under the community kids with special needs .And all the best

DeLaina - posted on 11/20/2011

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no addison's is kinda the same...and yeah it does affect girls more...its life threatening at times when hes not able to keep down his meds..thats when i have to give him a shot...

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