AirGoofy
DIS Dad#341
- Joined
- Jul 24, 2009
DD12 has been "sick" for almost a year now. It really got bad last year at Christmas (while we were at WDW no less) and we have had a dozen trips to the Children's Hospital at the University of Iowa over the last 10 months. It's been a long process of eliminating things and running tests, but they finally gave her a diagnosis yesterday.
She has a fairly rare disorder known as Takayasu's Arteritis. (I have always said she is 1 in a million and now I have medical documentation to prove it). It isn't life threatening at this time, and shouldn't become so if they stay on top of the condition, but she is in for a lifetime of medical treatments and routine testing to make sure things are under control. On one hand I am glad to finally have a name to what has been going on, but on the other hand that name finally shows our fears - that this isn't something that is going to go away.
Fortunately, we have good insurance that SHOULD pay for most of this (we have to fight an "unauthorized drug" battle since the FDA hasn't approved humira to treat this disease since it is so rare). Even MORE fortunately, we have good family and friends (you gentlemen included) to help us keep grounded.
Please pray for energy to keep positive in this whole ordeal.
Prayers for her and your family.