Rachel
I took Rachel to see a Pediatric Neurologist yesterday mainly for her ADD but to talk about the other things that she has been dealing with (going through?) for the best part of her (almost) 8 years. Essentially he wouldn’t treat the ADD without nailing down the other stuff for fear that ADD medication would make her much, much worse. Today I am taking her for an MRI and once the Neurologist reviews the results of school’s testing we’ll find out if she needs a chromosomal study, or just straight blood panels.
Wish Rach luck at the MRI today, I can’t imagine that keeping her still for very long will be extremely successful but all we can do is our best.
She has been “suffering in silence” for far too long. It is about time we got some answers for her.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Good luck Rachel!
(((HUGS))) for you Kate.
*hugs* Good luck!
Have you ever taken her to a chiropractor? I was a skeptic and I am now a big, big fan. They can do wonders. It’s non-invasive and couldn’t hurt as a compliment to anything else you’re doing.
I love me that Rachel. And I miss you guys!
Ok-so where’s the update? How’d it go????? I’m so glad they are going to figure out what’s going on and get her some help. Big hugs!