While it is a bit of a travel for you I implore you to contact the office of Dr. David Sherry of Childrens Hospital of Philadelphia. Dr. Sherrys program is without question the top of the RSD treatments for youth. I started with my RSD at the age of 13. The way I understand your daughter is younger so you will have no problem since shes younger then 19 to get in. He is a excellent specialist and one of the top RSD specialist in the United States currently. His program has even gained the attention of specialists from Germany, Japan, etc. These specialist have come over and studied his program and then returned to there country to set up programs like his. He is your best bet. Understand there will be a waiting list, but I can assure you its more then worth the time! I hope the best for your daughter and for yourself. Most likely your daughter will go through his treatment and like most others I have seen go 3 weeks or less and be completely put into remission and never even have to return. You will not find a better pediatric RSD specialist. Best of luck!
~Lord Wood
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Originally Posted by rachel's daugther
Hello Everyone, I am a new member and have learned a lot reading posts these last few months. I would now like to ask for your advise. My daughter has CRPS She was diagnosed in Feb 2010. We have been to the Rehabilitation Institute of Chicago for 10 weeks (twice a week for 1/2 days). When we started she had it in her left knee and while in re-hab for 4 weeks it spread to her lower leg, ankle, and foot. After it spread they suggested we do a Nerve Block, the 1st lasted 11 days and two weeks later the 2nd lasted 9 days. Both times the pain came back full force. RIC will only do 3 N.B in a 6 month period and her PM Doc does not want to do another one. I am surprised because they worked will for her. She now is in PT 3 times a week somewhere else, doing PT (Tens), Hydro and OT. All seem to be making her pain and CRPS symptoms worse, but I keep telling myself she needs this. Her PM Doctor at RIC does not want to do another nerve block or give her different pain meds, suggests she keep doing what she is doing - feels summer/friends are the best meds/biofeedback/PT/suck it up attitude. She can walk for short periods of time and is on Lyrica, Trazadone, Metanx and was taking Tramadol but didn't like the side effects and felt it was not helping, so has wend herself off of it. When we brought this up to the doc, he does not want to give her anything else. Her pain levels are at a 10 sometimes and I wish she would have dif. alternatives. We saw a Neurologist and she put her on clonidine at bedtime, which she hasn't been taking for long but is starting to have sleep problems. The Neurologist just didn't seem to want to get involved. I'm just not sure where to go from here, I need some guidance. Can anyone recommend another doctor who knows RSD that I can get a second opinion in the Chicagoland area. I'm trying to find someone who will listen and maybe try some other treatments. She hasn't had CRPS for long and from what I read now is a critical time. Doc does not agree with me and says I'm to anxious. I am looking into the 3 week program at Children’s Hospital in Boston, MA and thinking of Oxygen Therapy. Also my daughter does not have pain in the back of her knee, her calf or her toes, is this normal for CRPS. If anyone has any suggestions I would greatly appreciate it.
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