The situation we find ourselves in leaves us with so many unknowns and so many questions. But, the one thing that we do know for sure is that A clearly benefits from IVIG. That is a given. The one thing we don’t know is WHY. At this point, we still have no scientific data that shows that anything is off kilter with her. We have done so many blood tests and they have all come back just fine. The only thing we have learned through all of this is that A has an allergy or a sensitivity to eggs.
As her parents, we should be thrilled that she is perfect in every way and of course we are. But it is unfortunate that there isn’t some minor blood test that she has failed. Like her strep titers or something non life threatening like that. We know she responds immediately to IVIG but we don’t know why. Well, the hospital and the insurance company are not going to keep admitting us for IVIG with only that as our explanation! We have until the end of October to find a scientific reason that A responds to the IVIG. The fact that she responded to the steroid burst shows that she has an autoimmune problem but we don’t have a title that is widely accepted.
Our ped is fabulous and spoke with an immuno doc. He told her that we needed to quickly find something that shows that A is one way when she is healthy and another way when she is sick. Something scientific. It can’t just be the ped and I speaking about it. His recommendation was getting an EEG. An interesting note here is that A has already had an EEG. When she was 9 days old she had tremors. John and I were scared that they were seizures. We followed up on it and eventually had an EEG done on her at Children’s. At the time they told us the EEG was mildly abnormal. But they also said that if we brought some random person of the street and gave them an EEG, we would likely also find an abnormality. At the time, John and I took their advice to do nothing about it and wait and see. Shortly thereafter the tremors went away and we never saw them again.
The neuro who is doing the EEG is the same neuro I had for the problems I encountered at the end of my pregnancy. The visit was extremely frustrating. We had to repeat everything about A’s history and case in front of her which I think is inappropriate. He then told us that he doesn’t believe in PANDAS. He said that the behaviors she is demonstrating must be psychiatric behaviors and that in order for him to believe otherwise we need to have her seen by an MD psychiatrist.
This was infuriating to me because I have spent the last 6 months asking all of these questions to all of the experts we are seeing. I’ve asked repeatedly that if PANDAS didn’t exist whether A has a psychological problem. I’ve been told no. Each of the experts we have seen and have relationships with have told me that a “thing” triggered this. I believe the correct term is that it is an organic neurological condition that was triggered by a virus. He hadn’t even looked A over yet when he told me all of this. He actually thought that C was A. It was so hard for me not to tell him that his behavior was why I fired him and had moved on to a different neuro for myself. But I decided that would do nothing to help my daughter so I kept quiet.
I haven’t gotten a chance to review this with our ped yet but am interested to know what she will have to say about the visit.