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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Wednesday, January 5, 2011

3 Days & 2 Appointments

Monday this week we brought Bean to the "rheumatologist" at Brenner Children's Hospital. I was thankful to be able to get her in so quickly seeing as how I had just called Thursday last week. What a joke, what a waste! Mondays appointment confirmed we are doing the right thing by going back to Duke Children's Hospital. Her pain has been increasing in intensity and frequency for at least a month now. Oh and still exhausted! She also has swelling that comes and goes in her toes and fingers, her knees are squishy and she has been having toes and the heel of her hand turning purple and she says that REALLY hurts. And of course interspersed with all of this is periods of time where she seems perfectly fine! I love those moments, nothing brings me greater joy than to watch her skip, dance, run (which always looks odd and hobbled) and play like a "normal" healthy little girl. But I also know what will come later on. She will be laying somewhere crying that she hurts, or taking her frustration with her pain out on all of us because she is trying to hide it and deny it exists. So this guy says non of this fits JA. That simply put, swelling and pain do not come and go with JA. It's either there or it isn't. Really? That's new to me but I was willing to set that aside to look into further on my own. Turns out that's BS. I have, since Monday, heard from adult sufferers as well as Moms of JA kids that say of course it can come and go. So my next question to him was, okay so if this indeed isn't her JA then what is it because this certainly isn't normal or okay. He asked to speak to me in another room. I braced myself because I knew what was coming. He says she is either faking it for the attention, OR because she has been told that she has this chronic illness that causes chronic pain she just has it in her head that she should be in pain. Uh riddle me this "DOCTOR" why then is it that she pushes herself way beyond her comfort zone, typically denies anything is hurting her when clearly it is, then finally reaches her breaking point only when she is in agonizing pain and THEN and only then does she stop what she is doing?? He said he has no answer for that, he just knows there is nothing medically wrong with her and that her JRA is currently under control. Right, thank you so very much for wasting my time today and doing nothing to help my child. I recently had requested copies of her records from his office which includes all her labs. I looked them over briefly and thought they really didn't look anything like her Duke ones but at the time didn't think much of it. Yesterday Hubs and I were able to access her labs from Duke (last done Dec 09) and compare them to the labs from Brenner. He has done nothing other than a basic panel that any one of us would have at say a regular yearly exam. He hasn't run a sed rate or a CRP. Now, here is the other interesting part of that. Her last time at Duke I clearly remember there being little to no visible inflammation, maybe some squishiness in her knees, her range of motion was excellent, and yet her sed rate was 26 with normal range being 0-13. So clearly with Bean she can have inflammation that you can't see. UGH. Still kicking myself for not researching this doctor before making the switch.
Now on to today. Today was her routine opthalmologist appointment to check for a Uveitis flare. I was so nervous going in there today. With all the pain she has been in I was really worried that it had come back. If that was the case I know we would have needed to discuss another med switch. I have tried to go back through the blog to see exactly when her eyes became clear. Best I can find is in February I reported that they were still clear yet in January she had about 10 cells so closing in on one year anyway of her eyes staying healthy. WAHOO!!!!! Breathing a sigh of relief on that one. The opth and her assistant her horrified by what the doctor told us on Monday. Felt good to get confirmation of the absurdity of it all from another doctor.
The unfortunate thing in all of this is that Beanz appointments at Duke aren't until March. I'm being told by friends and family to call and explain, maybe they can get her in sooner. As awful as it may sound, I have another crisis with another child that is more demanding of my focus right now. Until we can get this crisis resolved Bean will have to wait to be seen at Duke. We will simply do our best with hot baths, Motrin, rest and massages for now. I pray that this other issue will be resolve very, very soon.
Ooooh and by the way, in case you were wondering, yeah still no 504 in place. MmmmHmmm...


Deetipton said...

How did I miss this? (DOH!) Let me express my anger at your doctor. Why do these doctor's that are supposedly there to help, seem to want to do completely the opposite??? Any AF pamphlet will tell him that inflammation will come and go! So, is she somehow faking the inflammation? That would be one heck of a neat (though utterly pointless) trick. Our old rheumy had Em on Motrin. Our new doc asked if we had tried Mobic, Celebrex, anything else aside from Naproxen. She said that Motrin does almost nothing for the inflammation our kids have. Totally understand waiting when you have other crises, though. God bless ya'll for having to deal with all of this at once!!!

Amy Cunningham said...

Gee how did you miss it....oh IDK I think you've been kinda busy Mama!! LMBO!
So yeah, my kid does parlor tricks. Swells off and on just to show off, yep. And last night I noticed that her hands and feet were on FIRE despite the fact that the rest of her was cool to the touch. Another trick I'm sure. My point to him was, if not her JRA, then WHAT?! What is this?! It's SOMETHING! He's ignorant and useless apparently.
We've tried Celebrex. Not only did 100mg not work, but it added to her fatigue. She told me this morning, while laying in her bed and struggling to get moving, that at school she is REALLY tired by lunchtime :( I hate this! I told her AGAIN that she can go lay down, even for 15 min if she needs to, in the nurses office. She doesn't want to miss anything. *sigh*