2chatter - my old neighbors daughter has a rare condition (NF, nothing similar to what your DD has) and basically had the same issue regarding docs coordinate. I'm not sure how it got coordinated, but twice annually, they do a NF clinic - they get all their testing MRIs and blood work done in advance and then spend an entire day meeting with various specialists and deciding the best course of action.
olenka, I was thinking, we should start a thread to share sewing projects! I know you and I both sew/quilt, and there's one or two other people who do. I can't remember who else has posted about it. I'd love to see what you're working on!
sudokufan, Yes! I knew there were others who had posted about it before! I didn't even realize there was a craft board. Definitely seems pretty dead over there. Maybe we can just get a thread going here to share WIP pics or chat about projects?
2chatter, I think I asked you this before, but has your DD been tested for lyme's disease? I have a close friend with it, it took almost a year to diagnose, and it's taken her quite a long time to get it somewhat under control - over 5 years. She's done a ton of research on the topic, and provided me with some info when we thought my niece and nephew had it. There's a private lab that tests for hundreds of strains - igenex.com. Most labs only test for a handful of strains, and it can be left undiagnosed for years.
Once diagnosed, it's manageable for most people. There are fringe cases where it has a lifelong effect, but even then, it can be managed with diet and medication.
You mentioned thinking outside the box... this might be a path to try... good luck...
mae0111 - they ran a basic blood panel and some other panels and Lyme was in it - but you nailed my issue. They are surface testing across the board. I'm ready to find a full on round of testing - I mean, they found the enzyme deficiency totally by accident. What else can they accidentally discover? At this point I have tried specificity and now think volume is the solution. We have hit our deductible and it's almost summer - I think tests will be our hobby. My niece may nanny for us a few afternoons a week; one of those might be "take DD to this hospital for this". Ugh.
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