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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.

Friday, September 2, 2011

SO glad that's over with....

The last time that Jenna saw the rheumatologist at Duke Children's Hospital in July, Dr. V not only detected a flare in Jenna's right ankle, but she also suspected jaw involvement. This REALLY had me worried. I don't know much about arthritis in the jaw, but what I do know is that it is difficult to treat, there is much controversy not only on how to treat it but if to treat it, and without treatment the jaw will likely deteriorate. The ankle I could deal with, the jaw I could not. An MRI of the jaw, done under sedation was scheduled, as well as a follow up with Dr. V. (side not: at this appt in July, the opth found her eyes to still be clear. YAY!) We went back up to Duke this past Wednesday the 31st for her MRI and follow up with Dr. V. What a long day that turned out to be! A 10:00 MRI turned into a 12:45 MRI. A 1:40 appointment with Dr. V turned into a 3:30 appointment with Dr. D. *insert sad face* We really wanted and needed Dr. V. Lesson learned, speak up for what you want and or need at the doctors. The amazing news of the day is that the MRI showed no current jaw involvement and no deterioration from past jaw involvement! OH PRAISE GOD! Okay so, Dr. D examined her, while she slept, and couldn't find any signs of active arthritis. Hmmm....just a month ago Dr. V detected a flare in her ankle, 3 weeks ago at home she was hot, swollen and in pain in her knees, wrist, ankle, elbow and hip. what's this all about?? Dr. D also mentioned that in Dr. V's notes from her July appointment that it may be time to switch meds. Ooooookay, she didn't say that out loud, just put it in her notes. Lesson learned, ask for a copy of notes. So I am still more than a little bit confused as to what is going on. Is she flaring? Do we need to switch meds? If it isn't a flare, then what is with the swelling and heat in her joints? At this point we are waiting until we can get her eyes checked by Dr. W. We will be making the trip back to Duke next Wednesday for that. If her eyes are flaring then there will be an immediate phone call over to Dr. V and we will go straight over to see her. If her eyes are quiet, then I don't dare switch her current meds. Increase yes, switch NO. So, we wait.....again. If nothing else, these crappy diseases are certainly teaching me patience.
Lets recap lessons learned this week:
* Speak up and get what you/your child needs/wants from a doctors visit.
*Ask for a copy of all notes from all visits
*Always expect the unexpected. You can't prepare yourself for these appointments.
Tell these NOT look swollen to you??

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