A week or so ago we were at Tyler physiatrist ( aka a Rehab doc.) appointment for a follow up. The follow up was for his phenol shots that he had during the summer to help with his cerebral palsy. During this visit it was suggested that Tyler is a perfect candidate for a baclofen trial and a possible balofen pump. As we were discussing details about the visit they inquired about our insurance and our coverage for Tyler.
( This is not a debate on insurance in ANY way. It was just what happened and I have a whole other post about what happened and why and insurance and all that jazz.)
When it was discovered that Tyler is not covered by anyone other than our private insurance for coverage they said they would not do the baclofen trial and he would not be given the pump. The reason for this is because it would cost to much for us out of pocket and they can't do that to the parents of these kids because the long term care is to costly.
Baclofen is a muscle relaxer. Without it he has continual muscle spasms. He continually burns calories and it hurts. It HURTS! It is like having a charlie horse 24 hours a days. As he grows the spasms will get worse. It will hurt more. It will cause him to lose the ability to walk if we aren't able to give him the medication and at some point he will not be able to function "normally." * Oh and the baclofen is on the 4 dollar script list at Walmart. It is a cheap, easy way to help*
This morning, a local news station showed a small trailer for a man that was arrested for a DUI. Though that isn't uncommon, the man was riding his bike AND he has cerebral palsy. Because of his medication to control his cerebral palsy he was arrested. He was arrested because the medication to make him NORMAL ( oh how I hate the term that was used but gee.. another blog!!) is what caused him to be arrested.
Tonight on Channel 2 news at ten they are going to show the Dash cam for the arrest involved. What makes this even more ironic, this particular officer has the MOST DUI tickets in the state.
The part that makes me frustrated, the only way for this person to be able to use his muscles is by taking the medication and by USING the muscles. Those muscles aren't going to work if he doesn't use them and if he doesn't have medication to help him.
Is it discrimination? How do I help my child grow up as someone that is looked at as beneficial unit of society?
