Wednesday, March 24, 2010

2 years, already?!

Several friends have asked recently, "How is Charlotte doing?" And can you believe its been 2 years since the arthritis induced uveitis battle began?

For Spring Break we are headed back to Boston. Back to see Dr. Stephen Foster, uveitis specialist, for his strategy on moving forward. (Charlotte playing with playdoh at age 2.5 when we last went to Boston - notice her steroid cheeks?)

Charlotte's eyes have been quiet off of Pred Forte (steroid topical drops) & the combination of Methotrexate (arthritis go-to drug, an immune suppressant) & Remicade (a TNF protein inhibitor that treats the underlying cause of arthritis).

We've talked to our Pediatric Rheumatologist about his thoughts on an exiting strategy & they are: Continue to stretch Remicade intervals out further (how far? how many weeks? & then stop!) & see if Methotrexate can hold it on its own. Then stop Methotrexate to see if her body is holding strong.

Remicade is still not FDA approved for Charlotte. We go through a LOT of hoops with insurance for every treatment she has (every 4 weeks for a year then every 5 weeks, then every six). Lots of back & forth with the insurance company, lots of paper printed of "this is not a denial but....." A lot of wasted time calling, complaining to insurance, getting them to reverse & then calling the hospital to make sure they got the ok from our insurance to go forward.

Follow this circus hoop: Our pediatric rheumatologist is approved by our insurance but the hospital he works at is not. Therefore by his administering the medication at the hospital, we jump through hoops to have it done under his supervision.

Do you know every Remicade treatment Charlotte has costs $4k!! Which means that these 2 years... not exactly accurate estimates would guesstimate approximately over $72K for Remicade alone spent on Charlotte for 2 years. Methotrexate is $10 a month, inexpensive in comparison!!

I was calling & sending letters to our Congressman about the health care reform. Our Congressman was holding out until the last minute. His VM was always full, so he got emails from me. He finally voted YAY.

We are GRATEFUL for healthcare reform!! Here's a scenario I no longer have to worry about. Charlotte goes to college. She leaves my supervision. Stress, food choices, growing up throws her body into an arthritis flare up. She's 22 and no longer on our insurance because dependents are kicked off at 21. Could we EVER afford Remicade if she wasnt on our insurance? NEVER. The cost of Remicade for Charlotte has been equivalent to a down payment on a house!

Health & healthcare is a HUGE deal in our house. You never know what you got till its gone... right? Well, same goes for the fact that you never know how well you have it with well children... There are families who work hard, contribute to society, give back to the community & will go bankrupt without healthcare reform because their child has contracted an autoimmune disease. We are so VERY grateful for our insurance & for the new reform.

And for more politics, we will eat at Harvard Squares: Mr. Bartley's. Take a read of their menu, what a hoot! (For those of you who know me well or have read the food journey our family has been on... I know, I know... what WILL I eat here???? Where is their beef from??? Is it pasture raised? Might go with the veggie burger option.... :)). Then we are headed to the JFK Library on the campus of University of Mass, Boston. I am planning the restaurants/shopping/activities now :) Any suggestions?!?!


Linda Cox said...

What area of town are you staying in? I can send some reco's based on where you will be.

Dawn said...

Thanks, Erika, for sharing your story. You're so right about having a healthy child:

Don't it always seem to go
That you don't know what you've got
Till it's gone

Preexisting conditions?! Our children have some doozies.

Hope your trip to Boston is a huge success on many levels. Peeked at the restaurant menu and couldn't help but laugh out loud (and drool a bit)...