Monday, October 14, 2013

A little Update

Hello Again, Just checking in.

Jaxson has been having a really hard time these last few weeks. He has been falling a lot and not catching himself again. Like a roller coaster. Last week he had fallen and he caught his fall with his head into the wall and into a wooden crate....followed lots of blood and a very frantic doctor visit! We finally have spoken to the doctors in Boston and he believes its a Atonic/Absence seizure, and he DOUBLED his anti-seizure medication and he requested that we do another In Hospital EEG down in Boston...I'm worried about this, worried about my house, my dogs, doing it alone, finances...But we'll cross those bridges when they get there. I am hoping we are on the right dose now, and we'll stop these seizures in their tracks. So far he has not fallen this week, any more than a typical toddler, so here's hoping!!

He has been having a  hard time with his left side, hand in hand with his falling.... (but we are using Kin so tape to try to correct that placement, though its not working in this picture! We will re-tape with a stronger tension) His brace has been ordered.

His behavior has been extreme, and its been life altering in the fact that we don't go anywhere right now. He is self abusive, obsessive and angry, and doing some pretty scary things...OT/EI/PT have all been helping us, so maybe things will calm down and we'll figure out what he's feeling, and why.

RA blood work came back normal, so this likely means his fevers are caused by a genetic syndrome of some sort. We are going to Genetics on Thursday. Fingers crossed for us!

I will update more after our appointment.

Love you all!

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