I think Dawson's seizures have a mind of their own. They do what they want to do, when they want to do it. Never mind the brutal cocktail of meds we concoct and shove down his throat. Nothing we give him seems to help. Me, ever the optimist, likes to take the approach of, well, just think how bad it would be WITHOUT the meds... But some days even Im hard to convince he wouldn't be better off without the meds... So i guess you have figured out by now that our new drug we have been on ( Banzel) is doing absolutely nothing... Except making him a little more cranky than usual.
Can't blame it all on the meds though. I know seizures have a big play in his crankiness. Just the other day he was fussy, I mean really fussy... Very irritated and all out of sorts. After about a couple of hours of this fussiness he has a pretty hard seizure and immediately afterwards.... TADAAAAAAAA were back to happy Dawson. Its as though he can sense one building and he finds it very irritating. Who can blame him right??
The good news... These days finds Dawson more happy than not. Yes he has his moments BUT the better part of the day is spent with him running around, chasing his sister, playing with his toys, climbing on everything in the house, looking at books ( he loves to be read to) Wrestling with Madison, eating everything is sight, dancing, singing, and being what I consider to be an otherwise normal almost three year old. Other then the few behavioral outbursts, Im telling you, you would find it very very difficult to see Infantile Spasms, or any other seizure type in him. Speech delayed?? Yes other than that?? no problems... and that my friends is what I still consider to be a MIRACLE. Praise God
Other news... Madison and Katelin got glasses this month... Always something right???
Not much excitement going on in our little corner of the world right now.. and I couldn't be happier!!
Love to all
Jeff and Allison
2 comments:
Love the glasses! She's too cute! So sorry Banzel hasn't worked...yet. You know it took lots of increases and a few months before we saw improvement in Reagan. Our neuro said that it's important to check the blood levels of Banzel because for some reason kids tend to metabolize it quickly and need higher doses in order to achieve a therapeutic dose. Just an idea. Despite the seizures Dawson continues to be a walking, talking miracle.
I think I told you this before but Banzel was a nightmare for us...Hudson was a zombie on it and seizures were way worse. We did a sizeable increase over weeks. He got worse as the increase continued.
Hudson also used to get very, very agitated before seizures...usually unconsolable crying that would end when he had a bad seizure. I always felt like he knew it was coming. Today, he gets very "wild" typically before seizures...kicking and vocalizing...I was talking to a gal here in Vegas who said she had seizures as a child and I asked to explain what it felt like...
she said they don't hurt but you
you feel out of control and it is very scarey feeling.
I am sure all seizures feel different, but it was nice to be able to be "told" what it feels like when going through it!
Yes, your little man is amazing...wish he could teach Hudson how he does it! ;)
God Bless...Deb
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