My 14 year old was diagnosed a few days ago with chronic, recurrent Reiter's Syndrome and is positive for HLA-B27. He already has a host of other medical issues including Tourette Syndrome with all of the comorbid conditions, Hashimoto's Thyroiditis and Seborrhea.
I posted in the main forum with more background on what led me here: http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=273407&#Post273407
Our pediatrician called and spoke to a specialist at All Children's. He messaged me this am and told me to call them ASAP because at the moment my son has been dealing with bladder control issues for almost two weeks. He's given a med that he said is merely a "band-aid" until he can see a specialist.
I called them and was told that they had no idea who my son was, implied they weren't taking any new patients and that they'd need to wait until the doctor got there later in the morning to speak to him about it. That she would call me back after she spoke with him.
In the late afternoon I still hadn't heard from her, so I called back and ended up with the nurse. She said she'd never heard of my son either but she would go look and be back. When she got back on the phone she said that yes both doctors had spoken and they had my son's info but that she would have to wait until the doctor was out of his clinic. That at that point they would decide on what they wanted to do (which...I don't really understand what that means; take him as a patient? Send him somewhere else?) and then they would call me back.
Which they didn't do today.
I'm not feeling good about this, especially since being HLA-B27 positive with my son's symptomology and age of onset looks like early AS and combined with Tourette Syndrome this could be very bad. I want to be someplace that's on the cutting edge - but cares enough about the families to at least return a phone call.
I don't care if we need to get on a plane - where in the world do we even go? Who treats pediatric patients with Spondylitis? Who's the best?