Sunday, October 30, 2011

If it's not one thing, it's 20 others.

I blame myself for J's health. There is no denying that she got my bad genes. Obviously, there is nothing that I can do about it. I did everything right during my pregnancy but she still has JA and uveitis.

J went to a new PT on Friday. This one has worked with JRA kids for years. She worked at CHLA and worked very close with the rheumatology department there. I have put all my faith in Rose. She did things none of the other therapists did. She measures J's hips, knees, checked her back for scoliosis, which also runs in my family but so far J looks good-- WOOHOO!

After all this measuring I find out J's hips are a mess. She guards her knees which has tweaked her hips. She actually has contractures in her hips just like she had her in knee when she was first diagnosed. She still kinda does but it's not nearly as bad as it was. It's going to take a while to fix this but we will do our best to get J where she should be. J has lost almost all range of motion on her ankles and her hamstrings are really tight. All this explains why her hip hurts and why her back has started to bother her more in the last month. We haven't even assessed her upper body yet.

For now J has instructions to A) lay on her tummy for 30 minutes EVERY DAY with her toes hanging off the bed. I am to keep her legs parallel and make sure she doesn't rotate them out. Her hip bones are to be flat for the entire 30 minutes. B) the "runners stretch." Basically she will lean against the wall, one leg in front of the other, knees bent and feet parallel. It doesn't matter how close she is to the wall as long as she can keep her feet parallel. C) Hip flexor stretching. I get to make sure she doesn't rotate her hips and legs out. And D) this is the worst-- no more "pretty" shoes. No more flip flops, no more flats, no more bling. If you know J you know she LIVES for shoes. There was talk about getting her some arch supports and of we do I can see if she would be allowed to wear her other shoes once in a while. But for now it's a good pair of Nike cross trainers. If this doesn't help then I don't know what we're going to do.

We have orders for hip xrays next time we go see Dr. G. I have suspected she has arthritis in her hips for a long time but after seeing the new PT I'm wondering if it's everything else making her hips hurt. Either way it's related to the arthritis.

I know it's not my fault but I passed on my mess to her. I will do my best to fix her and try to take away the pain that she denies she has. Kids who are young when diagnosed with JA often say they don't hurt or they down play it. It's routine for them. No child should live in pain, EVER. I found out that J should have been going to PT on and off for the last 7 years. The reason she is so tight and has the  contractures now is because she did not get the therapy she needed. I should have pushed but I didn't. And look where we are now.

If you are a parent of a child with juvenile rheumatoid/idiopathic arthritis, ask about PT. Follow your gut and question your doc. It could save your child a lot of trouble later on in life. 

1 comment:

WarmSocks said...

PT/OT who work in children's hospitals and know what's needed with JA patients are great. They're also extremely expensive. I'm glad that my daughter had one session, but also glad that we don't have to keep going back. Good luck to J.