I am not quite sure how our germ free bubble got so infected but it wiped us out. Ryan, my mom and I all tested positive for strep and on top of that, I am pretty sure we got Marek's little virus that presented like a cold in my mom and myself. We have been feeling like crap all week so I can only imagine what our little guy feels like having a virus plus seizures plus being on steroids. I am amazed at how good of a mood he has been in the last couple of days.
Since Marek tested positive for RSV the hospital originally cancelled his PET scan for Tuesday and then the next day called me back to tell me they will still go forward with the test as long as he is not wheezing or has a productive cough. Since they have gone back and forth with whether to perform the procedure, I am taking Marek back to the pediatricians on Monday so that the doctor can listen to him and either give me the all clear or let me know I should reschedule his procedure. They said that sedating him while he is still congested would be putting him at risk and we don't want that.
Marek did go on high dose predisolone on Thursday. We are hoping, praying, pleading and begging that this is going to do the trick. We just need to get rid of these spasms. When this all started back in January I had no idea we would still be struggling for control months later, I guess I was being naive thinking that maybe the first one or two medicines would work. His bicarb level has slowly been going up therefore, we have been able to continually increase the Topamax. In order for Topamax to be at a therapeutic level in the blood his topiramate level needs to be at a 10, and then the doctor would keep him on Topamax for a few weeks at that level to see if it is effective. When we checked his topiramate level he was at 8.4, so we are almost there. I am hoping that if his level can reach 10 while he is on high dose predisolone that this could be the magic combo that kicks these monster seizures out for good.
We got some good news this week, Marek was approved for OT for an entire year. Now we are just waiting to hear about PT. I am glad OT is back! She hadn't seen Marek in three weeks. She told us she felt that his skills have regressed since she had last seen him, which his PT also put in her report. We are hoping that this is due to him being sick the last week and a half. His vision teacher came on Thursday and evaluated him. With Cortical Vision Impairment they score children's vision on a scale of 0-10, zero being that a child can only see light and ten being that they can basically see how neuro-typical children see. Marek scored a 5.2 on his evaluation. She said he did pretty well with tracking but his hand-eye coordination is very delayed. His teacher will be coming every other week to help Marek exercise his eyes and to teach Ryan and I exercises that we can do with Marek to help improve his vision. She told me that with a lot of practice many children increase their vision over the years.
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