Tough place
The rash from the Risperdal is getting worse and the Lamictal “starter pack” was denied (I got the letter today). I can’t keep her on the Risperdal with the rash like that so I’ll be stepping her down starting tomorrow, as quickly as possible.
I put a call into Rachel’s doctor within a minute of getting the denial letter so I am hoping she will call something else in (or a different version of Lamictal) tomorrow. The Lamictal starter pack costs about $250 out of pocket….
Rachel is going to be (and going to feel) HORRIBLE this week so will likely miss school. Send me a shout if you don’t hear from me for a while.
The picture: This picture is of Rachel on her 5th Birthday with my Mom (Granny) and her baby sister Julie.
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I’ve stayed up until nearly 2am to put this blog together and make it look good enough to put Rachel’s name on it. It’s kind of hard for me to stay on top of everything when the children are awake, especially when Rach is home.
Not everyone who will read this knows about us so I’ll quickly explain that we are a family of 6 that lives in the Boston suburbs with 4 great kids. Rachel is 10 and has (suffers from (I hate that term)) Juvenile Batten Disease which is very rare and you can either read more about it here or go directly to www.bdsra.org and the Batten Disease Support & Research Association will be able to educate you better than I can. Our other children are Julie (6), London (5) and Boston (4) and they are truly the best kids (wish the food bill were a little cheaper but other than that… lol).
In the last year I (Rachel’s Mom) have been working on getting Rachel’s educational and medical needs met and more recently have done some fund-raising work. We hosted a Lemonade stand on the fourth of July, had a table at Endless Summer and have started selling candles at Batten Candles. The next major fund-raiser we are working on is a 5k Race / Walk in our beautiful seaside Hull, Massachusetts town (May 2011).
If you have any fund-raising ideas for Batten Disease Research, please contact us (and thank you)!
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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.
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