Connor is not doing good...

It looks like he may be having a relapse of his OMS symptoms.

His eyes are moving uncontrollably (the opsoclonus) This is not good-it is a sign that more damage is occurring to his little brain. I emailed the doctor last night and I am about to send him a video of Connor this morning and his eyes. Hopefully he will have some good ideas of where we should go next...

I can't stand seeing him like this-he can't watch TV (he hasn't for a while now) and my nerves are just shot from watching him like a hawk.

Edited to add:

I heard back from the nurse and she said his doctor said to start his steroids now instead of waiting til April 1st. And he is looking into what to do next. Then the nurse said he wanted to know if we wanted to move his scan up closer-so I asked is he thinking the tumor is back? And it was obvious he thought it might be a possibility...but I don't think that is what is causing this...OMS is just like this, tends to come and go and keep you on your toes.

Just heard back again...He is thinking about starting Connor on Imuran, low-dose Cytoxan, and/or repeating the Rituximab he had last August are the three things he is looking into. All 3 of these are chemotherapy drugs. Looks like we are back in the fight bigtime.

Please say a prayer for the doctor to guide us in the right direction. And for poor Connor to get some relief quickly from the eyes movements-it is obviously bothering him as he keeps rubbing his eyes after the jerks occur.

He was doing so well-he has had a yucky nose so maybe that is what triggered the symptoms to go from bad to worse so quickly. His doctor is taking this very seriously and we have confidence in him finding the right mix of meds to get us over this setback.

Love to all-
Debbie