First we saw dental. Jackson's teeth look really good despite all the grinding he does. She said because he is 100% tube fed he is at lower risk for cavities but higher risk for tartar. No cavities that she can see and even the tartar was not too bad. He has 4 loose teeth!!! I only knew about 2 of them. And his 6 year molars are coming in. She didn't scrape his teeth too much since he is about to lose so many teeth anyway. She said we do a great job with his teeth.
As for the grinding, she said it's really common in kids with CP. She said that she was recommending not doing anything about it at this time even though they are really ground down. The nerves of the teeth move down as the grinding goes farther down, kind of protecting themselves. And he would not be able to grind fast enough to get to the nerve. She could make a guard for him to wear but she fears it will be a hazard for aspiration of saliva since his swallow is not the best. I may ask for one anyway next time though. I really don't want his adult teeth all ground down like his baby teeth are.
Then we went to see palliative. He was really interested in the dysautonomia symptoms and had us describe them in detail. No one has ever really wanted to do anything about it before, so this is very exciting for me. He is going to consult with a neurologist who specializes in this. (Tried to page her but she wasn't answering.) So he is going to call us after he talks with her and also maybe another adult neuro too. He also said he might do a holter monitor to see what his heart is doing. Hopefully this guy will be able to help Jackson's GI pain as well as some of the other yucky stuff he has going on. Keep your finger crossed!
We travel to Milwaukee for most of his specialists, he just gets better care there. Usually it's just me and Jackson. I tried to get Lee to stay with Zoe but she refuses to take a bottle. So we all went together because both kids with me alone is too much. Zoe did well until the end of the ride home...man can that kid wail!!
