Thursday, January 15, 2009

Visiting Dr. Kingsbury today!!

Whoo-Hoo!!! We are all excited to report Dr. Kingsbury could find no evidence of arthritis, swelling or..... anything.  He did throw us a bit of a curve ball in that he said he wanted to start to wean her off the methotrexate (mtx.) !!! We couldn't believe it.  He had previously told us ( I think I have shared this) that he wanted her to be off the prednisone a year and symptom free before considering weaning.  She is doing so well he wants to go ahead and start lowering her dosage even though she has only been off the prednisone since November 5th.  The other curve ball is he said if we wanted, we could try taking her completely off the mtx and see what happens.  (Yikes) After some discussion we decided we did not wish to push it and would try weaning her down and see how that goes.  No reason to jump into anything.  So, on Friday she will go down from 20 mg. to 15 mg. weekly.  We will see how she does and then at her next appt. in April we will decide what the next step will be.  

We asked him about side effects of taking mtx long term and there are none.  This drug has been used for over 20 years treating jra and he didn't know of any long term concerns so that was a relief to us.  

So, as she is weaning we will be watching her for breakthrough symptoms and if she catches a cold or virus to see if she has a flare up of arthritis with it on the lower dose of mtx.  If she should flare that will tell us the mtx. is controlling the jra not that she has out grown it.  Dr. Kingsbury was quick to point out even if we find it is the mtx. that is controlling the jra that is still a good thing and no reason to be discouraged.  So, we continue the wait and see.  Allison is excited at the possibility she might have out grown this disease that at first seemed like it would be something she would have to deal with life long.  

 Systemic jra is so scary at the beginning ( not that the other types aren't) with the rashes and high fevers but then it also is the one where after a year some kids just out grown it.  I find that interesting.  

As we drove to Portland we looked over the huge notebook of info we had documented on Allison over the last year and it was emotional to look at where we started, what we have gone through and were we are today.  We recognize we were so blessed to have wonderful, wise doctors here in Albany that reacted quickly to her symptoms and started thinking jra early so that Allison could get to a specialist in Portland quickly.  We had wonderful angels that were put into our path that intercepted and reached out to us to guide us to the Pediatric Rheumy. Doctor in Portland that we need to get Allison to so she could get symptom relief.  Looking back I can see clearly how God placed people along our journey to lead and guide us through this forest called juvenile rheumatoid arthritis. We also know that with out our family and friends and especially church family who so many have spent hours praying for Allison we would not be in this good place we are today. I only hope we can return the favor to others whose kids are effected by this disease. 

Jump for Joy for Allison tonight!!


Anonymous said...

Prayers answered! Good job Allison.....

The Wooton's

Cindy Price said...

I am thrilled to read your wonderful update. You are blessed!! Cindy Price

beachbirdie said...

I'd love to join you in jumping for joy but I smashed my knee the other day and jumping is not possible!

I'll cry for happy instead! Yippeee!

Anonymous said...

Well, the girl was smilin' when she came into her fifth grade class today! Asked if it was a good appointment yesterday, she replied, "yes". The smile on her face was precious, and no words were necessary I just had to visit your blog to read the particulars, and am so overjoyed by all you wrote. Wonderful hardly seems an adequate word to express what this means, but by golly it is WONDERFUL!
Mrs. Bailey