Answers

It's been a long while since the last post but I knew it was time to start up again.

Q and I went down to Seattle Children's Hospital again on Monday in another attempt to figure out what the heck is going on. This time we were seeing a genetic doctor. So far the last year we have seen: urology, nephrology, neurology, allergy, ophthalmology, auditory, psychiatry, and GI. I walked in hoping for answers but expecting to once again walk away disappointed. Most of the specialist couldn't explain what's been going on or offer any insight. A couple had passed us on to genetics. Now, HERE we were...at genetics. After a six month wait for our appointment we were not disappointed.

I gave the genetic counselor as complete a family history as I had and waited for them to tell me it was nothing and they couldn't help. The doctor came in and knew exactly what was going on. FINALLY! He said Q has something called Hypermobility EDS (Ehlers-Danlos Syndrome) which accounts for his hypotonia (low muscle tone), autonomic instability (dizziness, headaches, auras, pain episodes, etc), gastro-intestinal problems and anxiety. Everything that we thought was RND (reflex neurovascular dystrophy) is actually EDS. Add in the trauma our family has experienced the last two years and boom - you have Q's current state of health.

Eight years we have been trying to figure out what is wrong with our boy and we finally have a solid diagnosis. I feel so much lighter now. It feels so good to have a legitimate explanation for what has been going on. It's NOT all in our heads, and Q isn't making this stuff up.

He doesn't need any limitations aside from no dead lifting or cross fit types of exercise. And no yanking on his extremities. Mainly he needs to empower his body and learn what his limitations are and honor them. Overdoing himself is a bad idea. The doctor recommended; biofeedback (luckily Q is already on the wait list for that), the pain clinic (also already on the 1 year wait list), acupuncture (HAHAHAHA! Yeah right! My 7 year old who's terrified of needles?), hydrotherapy, warm heat packs, continuing with GI, Occupational and physical therapy. Lucky for us, we have already been on the right track for his treatment, we just didn't know what was wrong. I'm unsure if this diagnosis will inform his practitioners on their treatment, but it sure is great to have answers!