Watch this Video on Pain Management for Ehlers-Danlos Syndrome (EDS)
Watch this MUST-SEE video presentation from the Cincinnati Children’s Hospital discussing chronic pain management for Ehlers-Danlos Syndrome. This recent “online Q & A” event was held Tuesday, 8/20/13. Their primary focus is pediatrics, but the information will be helpful to all patients.
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About This Session
Cincinnati Children’s Hospital Medical Center offers this live, online Q&A for families whose children are living with the chronic pain experienced with Ehlers-Danlos syndrome (EDS). During this event, our co-hosts, Ken Goldschneider, MD, and Derek Neilson, MD, will discuss a holistic approach to managing pain for children and teens suffering from EDS and answer questions from you and other families online, in real-time. For the many who have been diagnosed, misdiagnosed and are living with EDS, this is an opportunity to learn effective solutions for reducing pain and improving quality and enjoyment of life.
Cincinnati Children’s, one of the nation’s top three pediatric hospitals as ranked by U.S. News & World Report, is home to one of the most comprehensive pediatric pain management programs in the country. Our multidisciplinary team has specialized training and experience in caring for pediatric patients with acute and chronic pain. In our outpatient pain management clinic and inpatient pain management program, patients learn more about their condition, develop coping and pain management skills, and minimize side-effects of medications. The Connective Tissue Clinic, treating Ehlers-Danlos syndrome, cares for more than 800 patients per year, making us one of the largest connective tissue clinics in the nation.
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My daughter is 15 and was recently told she has EDS III . she has had no genetic testing as of yet.We have been dealing with the symptoms of so many things the last 13 have been hell. no sleep, pain, broken bones torn tendon an dislocations of shoulder knee, wrists and fingers, plus sever back pain ,celiac and IBS since 2years old many allergies she was preemie 8 months and now painful periods .. We are seeing a pain Dr Kahn who has her on Cymbalta 60 mg and a Dr Guwenter for the arthritis pain and doing pt for her pain an mobility issues she dislocates, my question is her peds Dr. Melanie Caldwell has dealt with all her issues for the last 5 years but does not really have a handle on the EDS, so her symptoms get treated but no changes like: migraines neck pain so bad she uses a brace to sleep at night and body pain feeling sick all the time like mono little to no eating and dizzy and light headed, heart racing , nausea, diminished eating, depression an panic attacks , she is seeing a Dr. Simon for that and was on Prozac 20 mgs but changed to the Cymbalta to handle the mixed issues. I guess I feel she and her PPC still has no clue why she is so sick and unable to do more then one thing a day and the pain is none stop she is doing the pt twice weekly and daily and at home, but I feel she is having such bad reactions the day after that she lands back in bed and worse and then we go again …. what do I do next I feel I am still so in the dark my self and have read and gone to groups but feel lost. Sincerely Didi Gray
My daughter is 15 and was recently told she has EDS III . she has had no genetic testing as of yet.We have been dealing with the symptoms of so many things the last 13 have been hell. no sleep, pain, broken bones torn tendon an dislocations of shoulder knee, wrists and fingers, plus sever back pain ,celiac and IBS since 2years old many allergies she was preemie 8 months and now painful periods .. We are seeing a pain Dr K. who has her on Cymbalta 60 mg and a Dr G. for the arthritis pain and doing pt for her pain an mobility issues she dislocates, my question is her peds Dr.C has dealt with all her issues for the last 5 years but does not really have a handle on the EDS, so her symptoms get treated but no changes like: migraines neck pain so bad she uses a brace to sleep at night and body pain feeling sick all the time like mono little to no eating and dizzy and light headed, heart racing , nausea, diminished eating, depression an panic attacks , she is seeing Dr.S for that and was on Prozac 20 mgs but changed to the Cymbalta to handle the mixed issues. I guess I feel she and her PPC still has no clue why she is so sick and unable to do more then one thing a day and the pain is none stop she is doing the pt twice weekly and daily and at home, but I feel she is having such bad reactions the day after that she lands back in bed and worse and then we go again …. what do I do next I feel I am still so in the dark my self and have read and gone to groups but feel lost. Sincerely DG