Update on Christian's retinal stroke

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

Bad news: Christian has had a mild retinal stroke

Well this is news that has come from left field. As you know, with these kids, things can be going well for quite some time and then seemingly out of nowhere they present with some new issue.

Christian got sick yesterday and then lost vision in his left eye. At first we thought it might be blood pressure related. We got him to a specialist who examined him and determined that he has had a mild stroke in his left eye. He does not think it is blood pressure related as he reviewed Christian's home logs from his daily dialysis and his pressures have been ok.

We are bringing him to TCH to get an MRI done. At this point most of his vision has returned, but he cannot see peripherally - he has essentially a tunnel vision in that eye.

Will update you all with more info as we get it. Keep us in your prayers. Thanks.

Kiki's Dad