We saw a whole bunch of doctors the last 2 months. We got some changes on the front and a new diagnosis that was a little hard and I felt I needed a second opinion. We had already put into place a time to go to Shriner’s and back to our regular doctor. But in order to do that, we needed to go to Utah.
We saw the newest Rehab doc in the valley. She was highly recommended by our orthotic dude and we needed one closer for baclofen refills. It isn’t really something our pediatrician felt comfortable doing. We had to go in to Phoenix for it.
Total side note: PCH added a whole new part of a hospital. So so so so so nice! And the cafeteria was ROCKING!
The new doc was from Poland and doesn’t really like phenol. She also feels that Ty has a condition called Dystonia. I have done a bit of research and I think he might have it, but I also think there are things that he doesn’t have. I talked to my brother who also thought that maybe it was something that we should get a second opinion about. What I do agree with, is that we need to get his spastic muscles under control.
First plan of action was to spread out his baclofen through out the day. I was NOT happy about this. But we have cut his baclofen down to 40 mg instead of 60 and he is on PILLS!! He swallows them happily which means less gagging and trying to get everything down. It also helps that they seem to work better because we no longer have to crush them. He will also take his asthma medicine in a pill and that pesky smokers cough is almost gone!
Second plan, get the phenol. Come back and get botox. LOTS of botox. Then therapy, therapy, therapy. That is one thing I have truly slacked on is the therapy part of Ty’s care. He has such full days at school that I don’t want to try and take a exhausted dude to therapy and have him not do anything. So summer, we are really trying to find a center for him to go to or a therapy class or even to the foundation for a summer program.
Third, brace this heck out of his feet. This option is a good option but one we have explored before. Which means it hasn’t worked. We have tried and tried and he just can’t get braced to where he has good tone AND isn’t hindered. So we have the option of hindering his current movements or hindering him later in life. Sweet choices. So, I am calling to try and brace him and see what we can do.
4th, at some point he needs a pump. So we will look into it. We aren’t jumping the gun for that one. But we are seriously considering it.
As we went to Utah we got our second opinion. I am glad we did.
Next up... Our trip with surgery/shots and how amazing Tyler is!