Quote:
Originally Posted by DanaH
Hi my name is Dana. My 12 year old daughter was diagnosed with RSD. Her's is currently in her right foot and knee. She has been on crutches since March. Her knee is almost frozen in place even with PT her range of motion isn't great. She's on Lyrica, and just increased to an adult dosage. The weekend she started Lyrica her appendix went crazy and she had that removed in May due to appendicitis. We live in the Midwest and there aren't really many peds clinics here for pain management. I am so lost on where to go and what to do or expect. I would just love to see my daughter walk again, but her pain is way to bad. She had a triple phase bone scan and has decrease upflow of blood in her foot and knee. So she stays very discolored when she gets up. Swelling is another major problem. Any help or any one with a child that Chloe could talk too would be great! Thanks,
Dana
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Hi Dana and welcome to our group although sorry that your daughter's illness brings you here. Be assured that there is a lot of support for you and your daughter on this site and lots of good resources and information.
The RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) has a special page for youth with crps/rds. Included in resources is a link to a group for teens to a buddy system.
http://www.rsds.org/Youth.html
Where in the Midwest do you live? I know of a teenager w/rsd who was successfully treated at the Children's Hospital of Wisconsin. Her mother was quite pleased with the success. The daughter had hurt her foot during ballet and after 1.5 yrs. she is now able to slowly return to ballet.
With an optimistic note, it's the youth w/rsd who are most successfully treated. If I recall correctly it's because of their hormones.
Keep advocating for your daughter and wishing you much success.