I met with our ped today and got some exciting news! A finally has a blood test that is not normal! This is great news. Before they do each IVIG they draw blood and run lots of tests on the blood. One of the tests are the strep titers. Her anti dNASE from the September IVIG came back high. This was the best news I have gotten in a long time. It proved to me that in no way am I imagining this and that she clearly did deteriorate after being well for a month. I certainly know that I am not imagining any of this, but to have the neuro treat us the way he did and also to have had no data up to this point was enough to make even me question myself.
Our ped was just as furious at the neuro as I was. She told me that if A had a psychological problem that IVIG would do nothing to improve it. She said that all the words he used with John and I was his way of telling us that it was all in our heads. She also told us she didn’t care what the neuro thought, we just needed him to do the EEG. The ped said there was a chance the neuro could have denied us the EEG and that because we are getting is done on Thursday that we were successful. So I guess it is a good thing that I didn’t tell the neuro what I thought of his bedside manner!!
Because we finally got an abnormal result we now need to retest A while she is healthy. That means she needs to have another blood draw. I think that time is of the essence because today is day 30 since her last IVIG. John and I did the math though and she is already doing better than she was last month. Last time it started at day 28 and got progressively worse. But it was day 34 when she completely lost it.
Our ped and I discussed doing the antibiotics daily for at least a year. We are switching this from two times per week and hoping that this could be enough to keep her healthy. I’ve already been doing this now for almost 2 weeks and I am somewhat convinced that this is what brought her back from her 36 hour bad spell. I mentioned that the higher dose of antibiotics might have prevented last month’s IVIG. The ped agreed that it is a possibility but we both wonder if A would have needed at least 2 infusions no matter what. Regardless, A will be on a whopper dose for a very long time. The Target pharmacy is another place that thinks we are a bit loony.