Matthew had an Excellent Shriner's Appointment
(Awnsers to our Medical Mysteries May be on their Way)
We saw the most excellent Shriner's Pediatric Neuro today. When he first entered the room, Matthew asked him to read him a book, and so he sat down and read Matthew a book. Let me tell you, I was in love from then on.
After he read Matthew the book, he sat down and asked us about Matthew, his medical history, my pregnancy history with Matthew, then he looked at Matthew's MRI, and then due a full neuro examination. He then asked if we had other children, we said yes, two. He asked us if they had any medical issues. We said Yes, that they all have neurological and other medical problems, we named them off. He then asked about Ryan and my health history. Ryan's being none compaired to my side of the family. He seemed shocked at my medical history (especially the Neurological) and then he asked about my Dad's, Mom's, and Siblings. I told him about all of their health problems ( neuological, gastrological, endocrine, ect.) He then went on to say that some children with CP have CP because of underlying Genetic diseases/disorders. He told us with the fact that I had an excellent pregnancy with Matthew, and that his brain just stopped developing in utero, and that some of his physical problems don't usually manifest with CP, that he feels he may have one of those Genetic diseases/disorders. He feels that with my moms, my Siblings, our Children's, and my health problems (which are very similar in nature), that we may all be suffering from a Genetic Disease/Disorder. So he is sending Matthew, Ryan, and I, to their Geneticist to have a full work up and history done. He told us that the Geneticist will probably also do testing on Jessica and Hunter.
So December 4th, we will be going for our first Geneticist Appointment. Ryan and I, feel that finally someone is actually listening to us and is trying to find out the awnser. We always felt that it was weird that Jessica, Hunter, Matthew, and I, all have Neurological issues/other related medical issues and yet the doctors have never thought they could be related. Everytime we have brought it up with them, they told us it was just a fluke. Fluke my foot!!!
I think the most wonderful part of this is that Shriner's pays for all it. We no longer have to fight the insurance like we used to. The CP Neuro also said that he will make sure that our School District meets all Matthew's needs. he will also be talking to all Matthew's Doctors, Specialists, Pt, and OT, so they are all on the same page.
In regards to what Matthew needs.He does not want to put Matthew in Braces just yet. He want's to see how Matthew's legs develop (muscle/tendons) before he put's him in braces. He was concerned about Matthew's severe fatigue issues, and was glad that his neuro gave us a script for a Special Needs Light Stroller . He wants us to get it as soon as possible. He also wants Matthew in a Full-inclusion Preschool because then the teachers can document all the area's of cognitive development that he might need help in. He also wants us to take Matthew to a Pediatric Opthamologist for his eyesight problems.
I think that is all for now. I am so sorry that this was such a long post. I just wanted to tell you everything. LOL!!! I am so glad that the CCS lady sent us to Shriner's. We just love them!!! I have never met such a thorough doctor. He spent an hour with us. Amazing!!!!
