It's not a diagnosis any parent wants to hear. Adrenal Insufficiency. It's rare. People have no idea what it means and generally haven't heard of it. The assumption is if they haven't heard of it, it can't be too dangerous. The problem with adrenal insufficiency is that a child can go from normal to crisis in a very short amount of time. Some days are normal-ish and others yield roadblock after roadblock. This is a place to share stories, tips and information to help other parents facing similar challenges. We are not doctors, but we have seen quite a lot of them. We can't help diagnose or treat your child, but hopefully we can give you some resources that can help you find someone who can.
Adrenal Insufficiency is treatable. It can be severe. There will be emergencies, but those can be handled with the proper knowledge, awareness, and preparation. If you suspect your child has adrenal insufficiency, it is important to get medical treatment from a licensed physician.
There are support groups on various sites. There is a group on Facebook called Parents of Adrenal Insufficient Children. There are also forum sites on MDJunction (http://www.mdjunction.com/) for adrenal insufficiency and parents of adrenal insufficient children.
You are doing a beautiful job! Being a parent of a child with Addison's is a challenge. There is no way to officially monitor the status of the disease, so it takes a hyper-vigilant parent to keep up with this rare disease. I am amazed by all that you have written about. You have become a mini-expert in this area and have taken on this challenge with zest.
ReplyDeleteLana