UPDATE 8/20

We had our appointment with the new Neurologist at St Christopher's children's hospital on Thursday. We didn't get any definite answers but I feel the trip was worth it. This dr doesn't feel that what Connor has is a straight forward case of cerebellitis. She told me that cerebellitis does not cause developmental regression or developmental delay. She also said Connor's liver was enlarged. She is not sure if it is enlarged within normal limits or not. It isn't a massive swelling but she could definitely feel it which you are not supposed to be able to do. Connor is going to need a CAT scan now to check that. Another sedation procedure. If his liver is enlarged then that would make her look at a whole new area of things that Connor could have like storage compartment diseases. I have looked that up and there are 50 different diseases and every one of them have different symptoms and different prognosis. It is going to take me awhile to get through them all. She also wants him to have a 48hr EEG to make sure that his zone out times and twitches are just that and not seizures. She is going to back our dr in trying the IVIG therapy. If that doesn't work then she feels we need to go ahead with the muscle and skin biopsies to look for mitochondrial diseases.

We go to our regular Neurologist on Tuesday the 26th to see where we go from here. She wants to do a EEG in her office which doesn't make any sense to me since the other dr recommended a 48hr EEG. We need to bring a letter from our physical therapist stating what she sees with his ataxia which is that he is more shaky and off balance than normal and things he was able to do even a week ago he is struggling with now. Our dr is going to use all this to try to convince the insurance co to pay for the IVIG.

We are also trying to bet a behavioral evaluation on Connor due to all the Autistic traits he is showing. Both our physical therapist and our developmental intervention teacher have recommended this in the hopes that we will be able to get a behavioral therapist in here to work with him too. We have also started Connor with a chiropractor. We haven't seen any results with that yet but he has only been working with him 1X/week for about a month now. We are just keeping our fingers crossed that something is going to start working. I will post again as soon after our appointment on Tuesday as possible.