Hi CM
I will do my best to try and answer you post but I'm not a doctor or nurse and they are the ones to look toward for specific answers.
I have Simple Virilizing CAH w/urethroplasty, vaginoplasty, and clitorectomy , Hashimoto's Thyroiditis, Celiac Sprue, and I'm an Adendocervical Carcinoma Survivior for 3 and a half years. Like for you with your daughter w/ CAH ummm it's the thyroiditis that came to light that makes me go blahhhhhhh Oh my goshhhh waht is this darnnnnnnn thangggg goona do next ? My endo is doing fine with it and I had to trust him.
CAH, I've found is difficult at times because everyone is different in how the conditon presents - a given there but I guess that he is talking about a bone age test and I want to reasure you that a bone age test is a standard test for child with CAH at one time or another.
Sometimes I assume things and read into it as well but I believe us with CAH do have a good chance. I can relate though because after finally being diagnosed with the cancer after the test missed that component and I wasn't told - I knew yet again that medicine isn't easy but I had to trust that everything was going Ok and never hursts to get a second opinion.
I asuume we have jsut as good of a life expectency as someone without CAH and I've read but don't quote me or verbally bash that on places like pub med and those journals that life expectency is "normal"
"And when we go to the endo he and his staff act like its nothing to worry about. why is this. " My guess on this is that if they were as nervous as we were then they couldn't help us.
There are lots o people that have CAH or the SWCAH - I even knew a lady with SWCAH that was a Doctor. I also know of ones that are nurses.
"I am so sorry to bother everyone with this but I hurt so bad for these kids and I almost lost my son a month ago."
You are not bothering anyone with this and this is why the board was created - to help and support.
"He had diarea and was vomiting very bad. I thought he was ok because he kept his meds down and then the vomiting stopped. But then the diarea started about 5 in the moring. He has never had this before so I rushed him to the hospital. I didnt give him his injection. I have never had too. I knew he had to have it but I thought it was only when he couldnt keep his meds down or when he broke something. He wouldnt respond to anyone and his blood pressure dropped very low. We had him rushed to the childrens hospital and they stablized him. The only time I have ever been that scared is when he was born and they didnt diagnose him because it wasnt part of thenewborn screening. Anyways if I would have lost him that day it would have been my fault and now I have to make sure it doesnt happen again!! "
You did an excellent job and are Awesome. If by chance something like this does happen You have the game plan down......youes been thar and done tat ! That ER has you noted and they did excellentent too!
"it would of been my fault" it's not your fault. Everyone has at least five genetic conditions floating around their family tree and some come out sooner or later. You or anyone else had nothing to do with this. I think why did I have to go through this but someone that had other conditions gave a great answer" why not" I do believe deep down that we are giving these trials because God wants us to see something ...do something more then people that don't have conditions. But trust me that i cry buckets over things.
I just try and take the medical stuff one day at a time and I have my fears but I try and write everything out ...for real and it helps. Also, for me cooking works and this new cool healthclub ...and and but sometimes what helps the most is just accept that yep I have these feelings and they surface but I can also work through it.
Best Wishes.
#disclaimer# this post is not intended for medical advice.
