Recap & Gut Instincts

We started taking Z back to Physical Therapy June 29th he was experiencing “that pain” again. It seems to flare up more in the summer than during the school year. Z goes to physical therapy 3 times a week for pain management. His therapist, Emily, noticed his lack of mobility in his back and felt there was something more going on than just hamstring contractures and recommended we see Dr. Johnson who is a sports doctor. Dr. Johnson took x-rays and found something at the base of his spinal cord, he couldn't tell me what it was ... he could just tell me that there was something there. So he ordered an MRI, however, Z was sent for an adult MRI and the results were not good enough to read, so for pain Dr. Johnson, recommended we use Benadryl (this is used as a muscle relaxer for children, so if you know any children who have growing pains 1/2 a Benadryl will help alleviate that pain and it won’t harm the child) and get a TENS unit as well. He then sent us to Vanderbilt Children's Hospital to Dr. Lori Jordan, a neurologist who ordered blood work and another MRI/contrast. The order got messed up and we ended up in a CT scanning room, I questioned the order and told the nurse that Dr. Jordan ordered an MRI/ contrast and he had to go and verify it with the doctor. I was lead into a consultation room and four other doctors came in to tell me that there had been a mistake with our appointment and that we could come back in the evening and we could get it done then. Well, the evenings are the worst for Z and he couldn’t be still enough to get good images so they had to reschedule the MRI/contrast and the wait turned into a two week one, because he needed to be sedated so that they could get the images that they needed. They ended up doing a full scan of his spine from the base of his neck to his tail bone. The scan lasted 3 1/2 hours then he had to stay in recovery until he was able to eat and drink without feeling nauseous. We should have results to the MRI by this weekend, at least that’s what we are hoping for. 

My gut tells me this is all related to the accident he was in with my parents. It had to have been missed. I just know that my goal/job is to keep Z as pain free as I can. 

Update from Dr. Jordan:  We learned today that he has Superficial Siderosis due to Trauma. He bled at the base of his head and the blood layered down his spine collecting at the base of his cord. We're still a little unfamiliar with the full details of his diagnosis, but have been told that this Trauma was an old one which leads us to believe that it was caused during the 2006 accident he was in. As far as his prognosis? There is no known cure and what they can do to help Z is unknown. This isn't something that is commonly found in children. Z's neurologist is going to be consulting with some of her colleagues at the Mayo Clinic/John's Hopkins and will be contacting me either tomorrow or Monday.

Z had some pain around 4pm so, we put the Tens on for 60min