Yesterday, I placed a call into our orthopedic doctor and neurologist for Hayden. I was waiting on pins and needles all weekend to hear the outcome of Hayden's MRI and blood work. I received my first return phone call from Dr. Mackenzie's PA. It was a brief business like call his results were normal. Whew, normal spine MRI, however I wish the staff that worked for Dr. Mackenzie had a similar bed side manner as he does. I think that some individuals in the medical community forget you are dealing with parents who are overwhelmed with what is happening to their child. Within an hour I heard from Hayden's neurologist Dr. Scavina. She reported similar results of a normal brain MRI and normal values from his CK levels. The CK levels decreasing were a great surprise considering they were slightly elevated in September of 2011. The big news was the spectroscopy for Mitochondrial disease was normal. The "M" word as I like to call it was a far stretch for Hayden since all of his lactate and pyruvate levels have always been normal. I asked his neurologist again are we just dealing with cerebral palsy? She said honestly, she does not believe that is what is impacting Hayden. In my heart I do not feel like that is what Hayden's "condition" is. What I do know something is causing great challenge for Hayden's balance. I "feel" like it has something to do with an immature vestibular system. I discussed this with Dr. Scavina and we decided to revisit testing for vestibular dysfunction. Hayden is now of age where he can be tested. We have that appointment scheduled in July. I also brought up reaching out to John Hopkins hypotonia clinic. She felt it was okay to get someone else to review Hayden's chart. She actually welcomed it saying they may be just to close to Hayden's case and a fresh set of eyes would help.
After hearing the results that I honestly anticipated I decided to call Hopkins. To my surprise the clinic is closing because the physician who started the practice is leaving the hospital. The intake secretary did tell me that all the genetics doctors at Hopkins are well versed in hypotonia and could see Hayden. Now, the question is do I take him to see yet another doctor. We have seen so many doctors. We have gotten so many second opinions is it worth the trip to John Hopkins? I am very fortunate to have so many great hospitals close by that we can travel at the most an hour to visit. I guess I will send them Hayden's medical records and see what they think. As I said before I am not sure that we will ever know what is causing Hayden's delays. Hayden is a medical puzzle. I often go back and forth between emotions. On the one hand it is nice not having a diagnosis because it allows for unlimited possibilities for Hayden. On the other hand it would be nice to have some sort of diagnosis so we can have a guide to Hayden's future. However, I keep trying to remind myself that even with a diagnosis this is only a guide.
All in all the results were the best case scenario for our family. Hayden is perfect and just the way he should be!