Christian and Mom traveled to Houston to get an MRI and see an opthamology neurologist in order to assess the damage, see what factors caused the stroke and determine a prognosis and therapy/recovery protocol.
The news is a bit mixed. The good news is that the damage appears to be limited to some mild loss of peripheral vision. Christian has recovered much of what was initially lost and that is great. He can see straight ahead just fine but gets blury as he concentrates on the peripherals. The specialist believes that he as recovered all that he will, but this is ok.
The not so good news is that our Nephrologist believes this may be the result of an ongoing episode of HUS. As we often forget, HUS not only affects the kidneys, but it affects the nervous system, the blood system, the brain and many organs in the body.
He is going to conference with some other Nephrologists and get some other opinions.
One side benefit of this is that this could be an opportunity to get Christian approved for Soliris treatments now, rather than being forced to wait until the time of transplant.
Definitely a silver lining, if there ever was one.
We will update with more info as it comes in over the coming weeks.
Take care.
Kiki's Dad
The news is a bit mixed. The good news is that the damage appears to be limited to some mild loss of peripheral vision. Christian has recovered much of what was initially lost and that is great. He can see straight ahead just fine but gets blury as he concentrates on the peripherals. The specialist believes that he as recovered all that he will, but this is ok.
The not so good news is that our Nephrologist believes this may be the result of an ongoing episode of HUS. As we often forget, HUS not only affects the kidneys, but it affects the nervous system, the blood system, the brain and many organs in the body.
He is going to conference with some other Nephrologists and get some other opinions.
One side benefit of this is that this could be an opportunity to get Christian approved for Soliris treatments now, rather than being forced to wait until the time of transplant.
Definitely a silver lining, if there ever was one.
We will update with more info as it comes in over the coming weeks.
Take care.
Kiki's Dad
No comments:
Post a Comment