Quote:
Originally Posted by SandyS
Thank you Marlene for this post, as a parent of a child with RSD, I would never question her pain. I relish the days that she can maneuver through a fun moment without crying in pain. I also pray that she gets sleep in the night, not waiting for her pass out from lack of sleep due to pain. I think this mom needs to take a step back and look at the big picture. I am also upset by the fact that the one doctor said they are categorizing most pain as RSD. I have never heard this. It took six years for the doctors to believe my childs pain, she had to have swelling and discoloration as well as being hospitalized for pain management. I NEVER thought her pain wasn't real and she was 10 years old at the time her pain began. I have gone to the ends of the earth to help my childs pain. It took me a while to post this reply, I was very upset it made me cry for this child.
I don't think a 10 year old could make up this kind of pain, so mom, remember YOU are her only advocate, relish the moments that she can still laugh, sleep and have fun, because they are few and far between with this horrible disease.
I will be praying for you and your daughter.
Sandy
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Hi Scared Mom with daughter in pain,
I can't imagine what all your are going thru, along with your daughter. Please know you both are in our thoughts and prayers.
It sounds like you want more confirmation for RSD. My diagnostic Ortho Hand Doc I saw in Oregon, sent me to Nuclear Med Dept at the hospital, They use dyes and put your hand (or limb) in a x-ray type machine and the dye shows the RSD spots. Confirmed Then when I flew back home-Phoenix- I went to a good Neurologist who gave me tests for RSD- Some king of machine- He confirmed rsd. Then sent me to hand surgeon-who also had physical therapy- hand Dr. had a student in the room and examined my hand and confirmed rsd and showed student why he diagnosed me. Then his physcial therapy people knew rsd and had treated many people, were in charge of my care and rehab.. They are the ones who had me do it dailey at home in the plastic bowls.
I can say from experience, seeing a psychiatrist who is a neurologist and pharmacologist has been the best for me. I had a very painful and difficult time accepting rsd. I have been seeing him for 5-6 years now. I just switched from once a month to once every 2 months-economy. He doesn't take insurance. He's the one who built 2 clinics with HBOT in them, I'm going to go thru next year. Even though I was 55 at the time I started seeing him-I was water skiing, snow skiing, playing tennis 5 days a week, aerobics, traveling 3-4 big trips a year out of the country, entertained friends a lot, shopped a lot etc. My life was crushed by a very painful disorder. This Dr. helped me get thru it as he knew the pain of rsd.
My parents died when I was 25 and 32 and I saw a psychologist- who was exceptional great for that grief in my life. better than a psychiatrist would be, well maybe not my current psychiatrist- he has experienced close family death.
You are at a GREAT time for remission and great improvement for your daughter. I personally would be heading to the Cleveland Clinic. They often have places from family to stay. I respect SandyS and what she had to say about the clinic and her daughter, Lindsey.
My heart hurts for you, the anxiety and questions you have running thru your mind must be huge. Atlanta is huge, I've been there..I hope you find knowledgable RSD Dr. !!! My mother had cancer and Oregon Drs. said they couldn't help her any more-We flew to Mexico then flew to MD Anderson Cancer Hospital in Houston, TX. I know the desperate feeling and anxiety that fills us when we feel helpless. I was 25...she was 46. Very sad.
Please know we are all thinking of you. I'll call my friends who is head of Nuclear Med Dept at major hospital on west coast today and see if he has any thoughts. He and his wife come and visit everyother year here for 2 weeks. I'll e-mail you with any information. He does the kind of tests that nailed down rsd for me.
Please know you can write here anytime and get ecouragement. Some are straight forward, as they know the criticalness of timing, and don't want you and your daughter to pass the 'window of remission' I remember my two remissions and am so grateful for them. One of them was during my daughters wedding and taking them to Maui for their 1st anniversary. Then another remission the 4 of us went to Italy and France for 4 weeks. Then it came back out of the blue.
I know you are scared-we all share your fears and HOPE. Please let us know how you both are doing. Thans, your friend, loretta with soft hugs
