Friday Night

Posted by Kat in Batten Disease, Blog, Medical, Rachel

I feel so cool blogging on a Friday night.  :)

I took Rachel to her monthly girl scout meeting tonight and she had a good time.  It was hard to watch her try and weave a bracelet (to raise $$ for Juvenile Diabetes) because she can’t see and has a hard time with mental processing activities that require sight. I promised her that I would finish the bracelet AND she could buy it off of me towards Juv. Diabetes.  Such a good kid.

She is on day 3 of the lamictal.  She is definitely more alert now that the risperdal is totally out of her system and her appetite is MUCH lower.  I wouldn’t say that she is totally under control (behaviorally) but I think even the baby dose of lamictal (25mg for the first two weeks) is helping somewhat.  She hasn’t been in school since Monday but I think she will go back next week.

There is a possibility that the Juvenile Batten Disease drug trial – the first one ever – will be starting soon.  There has been talk of it as long as I’ve know about Batten Disease so I’m holding onto a shred hope.  Hope, even if only a shred, is a good thing.

The drug trial won’t be for a cure, it it to test out the safety of using Cellcept (Mycophenolate) on JNCL kids.  Cellcept has shown that it can slow down the effects of the disease on mice that have been genetically altered to have JNCL (Juvenile Batten Disease). (jist of JNCL and cellcept usage in knockout mice)

Featured Picture:  That’s me (Kat), Rachel, Julie and Auntie Jacquie.  A park ranger took our picture on Peddock’s Island…  (wiki on Peddocks)

Tough place

Posted by Kat in Batten Disease, Blog, Medical

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.

Still waiting

Posted by Kat in Batten Disease, Blog, Halloween, John

Rachel’s rash from (presumably) Risperdal has been developing over the last few months and covers a good portion of her body.  Its not an angry rash, I would say it looks more like goosebumps that are red in a few places.  This medication has been good to get the ADD symptoms of Batten Disease under control and help make for a happier day for her and everyone… BUT… she has put on nearly 50 pounds since starting it.  At her age she was expected to gain some weight as puberty is around the corner but 50 pounds is crazy.

I’ve been working on coming up with the next step for her medication (she, thankfully only takes Risperdal and Prozac) because this weight makes her uncomfortable.  I brought a list of possibilities to the Doctor 10 days ago and we agreed to start her on Lamictal which is an anti-convulsant medication that is the only medication certified by the FDA to treat Bipolar disorder (other than Lithium).  Apparently the “starter pack” of the medication is quite expensive and insurance is still taking its time…

I find this endlessly frustrating and time consuming.  Making multiple phone calls to get a medication that she NEEDS for an organic, degenerative brain disease seems terrible.  I’m absolutely positive that I’m not the first person with a sick kid who had to climb through hurdles and I’m quite positive that I’ll look back at this entry in a few years and laugh with all that is to come.