I am so sorry to hear what you had to go through. That is awful. I hope you dont have to go through that again. I think it is awful how we as parents have to beg and plead with the DR.’s to do what we know has to be done. I have had this problem before about the DR. wanting to know why I even gave my son the shot. I was so mad. You know they go to school for what? Ten years? We do not go to school for what we have to do and we know more than them. I get so mad when i hear a story about a Dr. who has no idea what the heck is going on and what to do.  You would think that these Dr.’s who are new woudl atleast know something about it. I was talking to my friend that just graduated from nursing school and she said that they barley talked about Adrenal Glands let alone CAH. I think it is sad.  And you know what else makes me mad is when they say so how do you know that he has this? Im like ok Um the New Born Screening is how we found out. And do they have any signs or symptoms? WHAT?  I am always a little crappy and say um new born screening and we have a protocol and you are to call his endo and give the info. It just makes me mad. I wish I could do something to make this more known to DR.’s Maybe someday they will learn about it. I guess all we can do is advocate for our kids and keep giving info out to dr’s hospitals anyone in the medical field. I wish you the best and will keep your daughter in my thoughts and prayers!! and you as well.

 

God Bless