Hi everyone, Susan here.
We wanted to update people on a number of medical realities for Alex.
We decided mid-summer to switch Alex's care from Gillette to the Mayo Clinic. Alex's PM&R doctor was leaving Gillette, we were burned a few too many times by their bureaucracy, and the length of the trip was wearing us out. We investigated Mayo with some caution, because even though Mayo has a deserved international reputation for excellence, that doesn't mean they are the best at everything (shh, don't tell them :-) ). We were bracing to stick it out with Gillette if it was better for Alex. But we needed to explore Mayo as a possibility.
Well, short version is we're really pleased. We were set up with a neurologist, Dr. Bodensteiner, and he has referred us to other physicians within Mayo. Appointments were set up very quickly, and they have a tentative plan for Alex going forward.
1. First, Alex had an MRI...something that would have been in his future soon at Gillette as well. The idea was to look at the brain damage (CP assumes that) and try to measure his possibilities for improvement. He has significant brain damage in the area that controls mobility, and he said that's not surprising, because that part of the brain is developing at 30-34 weeks gestation and Alex has born at 31 weeks. It points to some kind of traumatic premature birth and a lack of oxygen and/or blood flow for a time. The mild surprise was that Alex has no cognitive brain damage, at least none visible through an MRI. As the doctor said, that is very encouraging for his future development. The other surprise was that Alex has some brain damage in an area called the pons...which controls movements of the mouth (speaking, chewing, swallowing, etc.). He said it was consistent with being severely dehydrated and then too quickly rehydrated after birth. It's an after birth sort of injury, not related to CP. It doesn't seem to effect him much if at all, which is good.
2. The Mayo PM&R team want to move Alex toward a possible rhizotomy, probably in June 2014. They are not sure he is a candidate for it, but they think it is the best possible way to address his spasticity issues, since the Phenol and botox are not having the effects any of the docs (at Mayo or Gillette) would like. He's also on Baclofen now, and its questionable how much of an impact it is making. Everyone there is resisting the idea of a Baclofen pump, which is fine by me. But he needs to go through a few assessments before the decision to do the rhizotomy is cast in stone. Basically, they want to see that he isn't too dystonic, because the surgery doesn't address that.
The way I understand it, the surgery isolates the nerves that deliver the faulty brain message to go spastic in certain places, and those nerves are cut. It's all day major surgery, and the rehab time at Mayo is three week in hospital/rehab center. You basically relearn everything from the waist down. You can see it isn't something done lightly. But beyond Alex not making progress walking, the spasticity is such that it could really harm his hips--he already has some dysplasia from the spasticity.
Also, I'm no expert, but I have heard there is a window for this surgery, and Alex is in it now. So while it would be great to delay this until he is considerably older, that won't work.
We're very happy with the way Mayo is listening to us but also taking initiative and offering a plan and how to get there. We always liked and appreciated the doctors at Gillette, but everything has been so much easier to get in place here at Mayo...and we've been very impressed with the doctors here too.
Did I mention our PM&R doctor adopted a child from Russia? :)
So: sometime in the next 4-6 weeks Alex will get Phenol and Botox again to do a gait analysis with his tone "quieted down," to see if he is a candidate for a rhizotomy. The decision will be made after a big pow wow of doctors across disciplines examine Alex (a spasticity clinic).
A lot of serious things going on, but all mixed with hope.
