Monday, August 25, 2008

It's just not fair

Could you imagine these eyes having cataracts? How about not being able to see at all? Those aren't things a 6 year old- or any child- has to worry about,right? Oh how I wish that were true.

I'm a member of a few different support groups and even though I don't post all that often I've gotten some great advice over the years. Uveitis.org is another wonderful resource I've come to rely on. I read something there yesterday that stopped me in my tracks. There was a mother who asked Dr. Foster about her 6 year old daughters chronic uveitis. (Sounds a little too familiar don't ya think??) She had been told by another doctor that no matter what her daughter will develop a cataract due to the steroid drops. It doesn't matter how long or how often the drops are used, the steroid drops cause cataracts. Dr. Foster agrees with the other doctor. He says that in 50% of patients at 850 drops a cataract begins. It doesn't matter if those 850 drops were used in 6 months or over many, many years of use. It will happen and there is nothing that can be done to prevent it. So it looks like we can add cataracts to Jordan's list of issues. I have no idea how many drops we've used in the last 3+ years but it's been a lot. Hopefully she'll go into remission but her eyes are not responding to the Enbrel. I'm afraid we're going to have to move onto Remicade. I've read that most JRA kids with uveitis respond well to Remicade but it's an IV infusion done over a 2 hour period at the hospital. Not exactly something we really want to do. Of course, if it comes down to it we'll do the Remicade.

All this has taken a toll on Jordan. She doesn't feel like a regular kid, she doesn't know what it's like to not have JRA & uveitis. Regular kids don't have to stick a needle in their thigh once a week and see 3 or 4 different doctors all the time. Or take medicines that make you feel sick. Not to mention all the blood tests. This disease has taken away enough from Jordan. I'll be damned if it's going to take her sight too.

3 comments:

Mama Peach said...

I wish I could taken all the pain away. xoxoxxoxoox

Suzy said...

Your right she's been through enough already! And what beautiful eyes she has! I'm so sorry to hear that she's not taking to the meds :(.. She continues to be in my prayers and I'll be checking back here soon. XOXO

Erika said...

Hey there - just catching up on your blog, found you through your entry on the Yahoo Group. My daughter is 3, we are in the Pacific NW & went out to see Foster last spring because of Charlotte's uveitis. We have Cigna too & it hasnt been a smooth road with them. They will mess with us EACH time we have a remicade treatment (1x every 4 weeks) & say that we are not covered. Yet it is, the medication is covered, the dr. is covered, where we are getting it done at - not covered, so they have to play that each time. Sucha hassle! Anywhoo - I am glad I found you, i will keep reading & invite you to mine :) Take care & Have a GREAT week! Your children are beautiful!! I am going to go read about their little adventures now :)