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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.

Thursday, August 6, 2009

This is Why We Are Here :o)

So on June 28th we headed South from Maine to North Carolina. Our main reason being better healthcare for Jenna. Not that we felt that Dr. Daihke ever treated her poorly. We just felt there HAD to be more. Something seemed to be missing from her care. I was hearing things from other JRA Moms that had me wondering. I think the issue is that he is a regular adult rheumatologist who just happens to also treat children. Since we are so new to this disease we didn't realize how crucial it is to have someone who specializes is pediatrics. Yesterday she had her first appointment at Duke Childrens Hospital in the peds rheumatology department. WOW! I am still dumbfounded. SUCH a drastic difference. Her exam was way more thorough. All the things these other Moms had mentioned and I had never seen done I saw yesterday. I got a whole folder stuffed with information for us on the disease and resources to help us on our journey. If we had only had this from day one...BUT no looking back. Only forward. The doc she saw yesterday is very concerned about Jennas current meds. Apparently she is on a dangerously high dose of Enbrel. She has been on 25 mgs 1x weekly for two and a half months. For her size this is way to much. Also her MTX should have been injected all along and not oral. Plus had she stayed in Maine her rheum was going to increase the MTX again which also would have been an overdose. She explained that this is a classic case of adult rheums not knowing how to treat peds. Thank God we moved down here when we did. I cannot even imagine the damage all these overdoses would have done. At this point she is leaving the meds as is until after an opthamologist sees Jenna. If her eyes are still clear then we will start reducing doses. If the are not clear then we change course. So on the 24th of August we go back to Duke to check her eyes. She hasn't been complaining so I feel pretty good about getting an all clear. The doc said yesterday that all joints are looking good except her knees. They currently have to much synovium fluid and tissue. I would like to know what we can do about that but Dillon was causing me some serious grief all through the appointment. She had us make a 3 moth follow up appointment. Seems a bit far out but we'll see.
I also finally chose a pediatrician for them. It has been a long stressful road trying to get ourselves settled down here. Still a work in progress. So they go to the new pediatrician on Sept. 4th and 8th. Of course they couldn't possibly take them on the same day. That would be WAY to easy. So I guess that's about it for now. Stay tuned for an update in a couple weeks after her appointment with the opthamologist. As always thanks for reading, following Beans Journey and for praying for our girl.

1 comment:

Russ said...

thanks for the update... every parent holds heir breath when they read these I'm sure. I'll try to pass some thoughts of strength and serenity your way...
Russ C. (your planet cheer family)