October 15th of last year started a chain of stressful events that were so medically perplexing. My oldest son Tyler awoke one morning with terrible back(lumbar region) pains. I took him to Ruby, a X-ray later and blood work the ER doctor comes in and says its muscle spasms. They prescribe him a muscle relaxer and ibprofren and sent us on our way. We were happy with this diagnosis and Tyler was excited to start feeling better. A week later, Tyler is still not well and the condition was worsening, so I took him to med-express. The doctor there said the same thing and prescribed more muscle relaxers, we waited again. Still no relief, so we went back to Ruby. The doctors there said we need to refer you to an orthopedic because we feel like we are just running you in circles. The pediatric orthopedic performed an CT scan and MRI( wow, this was an experience in its self, just trying to get insurance to cover them) and physical therapy. The scans as well came back normal. The orthopedic doctor says, Youre fine, I do not see anything. Your scans, bloodwork, have come back normal I can not help you. You need to go to a Nuerologist. This whole time we are bouncing back and forth between doctors, my son is missing school. He was in too much pain! He would fall constantly, could barely walk and rarely ate. Sleeping all the time. His weight started to drop and we were quite concerned! Not only did I have to worry about him medically but I also had to be concerned with him being truant in school. I did my best during this time to make sure all the school officials were abreast on our situation and tried to get him on a 504 plan or a Homebound program all to which is hard to do without a diagnosis. The Neurologist appt. came and went, they too found nothing, so they said its anxiety. Tyler was very frustrated!! He would say Mom, There is no way its anxiety! We felt so helpless!! Anyways, the symptoms started to alleviate but not dissipate completely. My thought was maybe the doctors are right but deep inside I knew they were not. Well summer came and went and here we are again, Tylers back is in another flare up. Anxiety??? I think not! I took the initiative to call UPMC pediatric rheumatology. I was desperate! Today was his appt. and we finally, finally got a diagnosis. Hooray!! This awesome, awesome Doctor said he needs to view all Tylers scans and records just to be sure there is not more too it, but what he can say to us is that we came to the right place, and our search is over. I literally cried! Tyler was diagnosed with Amplified Musculoskeletal Pain or Reflex Neurovascular Dystrophy(RND), in simple terms its a medical problem involving the nerves going to the blood vessels. These nerves are overactive and can cause pain. He said he was going to provide us with written documentation to assist us with his schooling needs. What a relief that is!! I wanted to share my experience with you all. We as parents need advocate for our kids. We are their voices! If you ever get a diagnosis that you know is not right, dont stop! Keep pushing. There were times in this process where I did doubt my son a little, even though I knew in my heart the previous doctors were wrong. It saddens me that I allowed their medical degree to override my mother instinct, but hey, at least we are on the road to better health now, right? I feel accomplished, and complacent.
Posted on: Sat, 25 Oct 2014 04:03:59 +0000
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