UPDATE 6/17

Connor had his MRI & spinal tap on 6/11. Nothing has changed. They still see the foci's on the MRI. They haven't gotten worse but they haven't gotten any better either. The results that are back from his spinal tap have not given them any clues.

His neurologist called me yesterday and she wants to put Connor into the hospital again and start IVIG therapy. No one is sure if this will help or not but she wants to do something. She has decided to go with the IVIG therapy over the steroids because his spinal fluid didn't show any protein or white blood cell clusters to point her in that direction. She told me that there are some known risks. They are anaphylactic shock (it is a blood product), meningitis, encephalitis & headaches. She told us to research it on our own, talk it over and let her know our decision. If we decide to go ahead with it she will get things set up for Connor to go into the hospital.

We looked it up last night. From what we read the chance of Connor having any of these side effects are much less because of his age. I think that he has a much higher chance of having a complication from the steroids than he does with this. The only thing we are worried about is that the FDA has only approved this for 6 different conditions and from what I read Connor's isn't it. Which means that insurance may not cover it. IVIG is being used for a bunch of different conditions with some very promising results. It has been used for MS, fibromyalgia, chronic fatigue and a whole bunch of other things but FDA only approved it for a whopping 6 conditions. The cost is VERY expensive. For children it is around $3,000/infusion. For adults it is about $10,000/infusion. We are not sure yet if his dr is going to put him on a 2 day or 5 day infusion. If insurance does not cover this there is no way we can go ahead with it. I am still trying to work all that out and figure out what we are going to do. I was thinking of letting them go ahead with it and paying $5/month. The only thing to do is just wait and see what happens but I did call her to tell her we want to try it. There are risks but the risks of not doing anything and letting Connor go on this way and not have a chance at a normal life is a risk I don't want to take.