3/19 update

Yesterday we had an appointment with Connor's pediatrician and she was upset to see that he hasn't gotten any better. She is also very concerned with the fact that he hasn't regained any words and that he seems to be choking and throwing up alot. She told us that she was going to call our neuro dr today and the metabolic team and then get back to us. As of now Connor will not be receiving any more vaccinations until we get a handle on what is going on. She doesn't want to complicate things or make them worse.

This morning she called me before 10am. She still had a call out to the metabolic team but she did speak to our neuro dr. Seems that they have decided that there might be something more than cerebelitis going on. Connor has had the ataxia (what they call the kind of walking he is doing) for long enough that it is now being considered chronic. He has had it too long now for it to be considered acute. That seems to have changed things in their minds. Our pediatrician is getting another speech/swallowing eval. They want to find out what is going on that he has reverted to almost infantile type swallowing problems. He spits up alot, vomits & chokes. All things infants do. He never really did it before this all started. I am waiting to hear about that and when it has been set for. But, once again a trip to CHOP. Our neuro dr also told her about an ataxia clinic in CHOP. They only deal with obscure and rare causes of ataxia. Our neuro dr wants Connor to be evaluated by them. My question was "why is this the first time we are hearing about this team? and why haven't they been brought in sooner?"

I no sooner got off the phone with the pediatrician when I got a call from the neuro dr's office. They set us up with an appointment for April 15th. At first I was upset that it was so going to take so long. That was until I talked to the DR who they put on the phone next. She explained to me that they were trying to get Connor into the ataxia clinic but that appointment won't be for at least 4-6 weeks. Then she told me about all she wants done in the meantime before our appointment with her. We need to get an ophthalmology appoint to check for some thing I won't even try to spell here. I can't find much on it but from what I did find it looks like a type of cancer. Then we need an appointment with the metabolic team. They told me they didn't believe this was metabolic and never mentioned another appointment but their report to our neuro dr says different. Then we need another blood test to test for amino acids. Connors levels were high but they aren't sure if he had eaten before the test or not (I don't think he did but they want to be sure). They won't tell me what it will mean if this is high and I haven't had a chance to look that one up yet. Then he needs to get an EMG. I don't remember what that stands for but they are looking to see it the electrical current from the nerves are getting through to the muscles right. Plus, we still have the speech/swallow eval.

I asked the nurse if there was anyway to put Connor in the hospital so we can get this all done in a day or 2 because on a good day it is at least 3hrs round trip. She told me that our insurance won't cover it. So, we have alot of traveling, missed days of work for Joe and stress coming up. I am trying to get the appointments together or at least get 1 or 2 on the same day but so far that hasn't been working too well. I will keep everyone updated as we progress through this nightmare. We will deal with the stress & financial mess if only we can find out what is wrong with Connor and how to fix it. It is going through all of this and still not knowing that is really killing us.