After The Hospital

It is now almost a month after Connor got out of the hospital and he is no better. His walking is the same. He isn't saying any words now. He babbles like an infant. He is much more irritable than he has ever been. Our pediatrician called our neurologist right after he got out of the hospital and she at least got a game plan so we didn't feel like we were floundering and on our own. Our pediatrician will be following Connor on a weekly basis and reporting back to our neuro dr. Our neuro dr will be seeing him every 2-3 weeks indefinitely.

Our first visit with the pediatrician went well. When I say well I mean that I felt like someone was on our side. She was upset with the way he was walking and the fact that he lost all his words. She didn't like the idea of how long this had gone on and told us that we were going to give the neuro dr the couple of weeks she thinks he needs to resolve this on his own and if that doesn't work then we need to look further into it. I left there at least feeling like we were listened to and our feelings were validated (meaning she didn't just blow off all our concerns like some of the dr's in the hospital did).

We saw our neuro dr on February 6th. She sat down and explained alot more to us and I don't feel that she is blowing off our concerns anymore. I asked her about clotting disorders (my sister just found out she has 2 hereditary clotting disorders. I haven't had the chance to get tested yet.). I was told that he would be having strokes not what he is going through. I questioned her about his MRI because any mom who reads that her kid has "nonspecific white matter hyper intense foci" is not going to just let it go as NOTHING. She informed me there were not enough of them to cause a concern yet (bet me I am very concerned!!). As long as Connor doesn't get worse we are going to wait. If he doesn't get better in 2 weeks we are going to repeat his MRI and do a full metabolic work up. If he gets worse at any time they will do things much sooner.

The neuro dr explained to us and from what I have been able to find during my research, cerebelitis usually gets better in 90% of the cases within 4 weeks. My worry is that other 10%. Because Connor has had this since at least mid November. We are way past the 4 week mark. I can't find a whole lot on it but the few posts I have found all the kids had some residual damage. Most of it was problems with coordination and balance. If my son can't be a ballet dancer because of this I can live with it but there are other things that can happen. I read about a 7 yr old that is in diapers because of this and some kids that can't even crawl. All the kids that were in those posts got worse anytime they had a cold or got sick. I just want the truth from the dr's. Are these the very rare cases? What are the chances of this happening to Connor, especially when he is so long into this? So many questions and no answers.

The dr's think this has been caused by a virus Connor had back in October. He had Hand, Foot & Mouth Disease. If that is the case doesn't that mean that he has really had this building up since then and not November? Then I found out that one of the rare complications of chicken pox is cerebelitis. Connor had is 1yr vaccinations in October and the chicken pox vaccine was one of the ones he got then. Could this have come from that? He is supposed to get a booster to that one soon (I think) and I am not going to let him have it. What if he just gets worse and never recovers because of it? Now I am petrified to have him get the chicken pox (which is a risk if I don't let him get the booster).

At this point we are in a waiting game. We are just waiting to see if he gets better and watching to keep him from getting hurt. He still wants to do all the stuff he did before but his body is making it hard. We just put foam squares down on our floor to try to keep him from getting hurt. I am disabled so trying to keep up with him is next to impossible.

We go to the pediatrician on Tuesday the 12th so I will do another post when we find anything else out. Now I have my 7 yr old getting sick and we have been told by the dr's in the hospital that something like that could make Connor worse so God only knows what is going to happen now.