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Aug, 13
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COMMENTS
Kenneth Goldschneider, MD, FAAP

About the Author Kenneth Goldschneider, MD, FAAP

Kenneth Goldschneider, MD, FAAP, is director of the Pain Management Center and is a leading expert in treating complex chronic pain conditions in infants, children and young adults.

Comments:

  1. Is anyone aware of a doctor, or clinic, or PT or OT who treats EDS in New York City or Long Island? My teenage daughter has EDS and it causes pain in most parts of her body, including her hands. She has been unable to write for 18 months, so that area is a priority for her. I appreciate it.

    Mike - September 26, 2014 at 1:43 pm Reply
  2. My 6 year old son was just diagnosed with type 3 EDS. I am looking for physicians that work with pediatric EDS patients in the San Diego area. Thanks for your help.

    Emmanuel Hunter - October 2, 2014 at 9:41 pm Reply
  3. So glad to see someone talking about a pain. I went to med school at UAB and trained at Mayo Clinic. Had to give up my practice finally due to EDS with multiple complications including spinal disease, migraines with micro infarcts, GI dysmotility, autonomic instability, etc. autoimmune arthritis, and narcolepsy among other problems. I made it 40 years without taking daily pain meds. I have and continue all other modalities you list for pain control. but it gets to the point where not taking pain medication daily is impossible. I know you are referring to kids. If I had had any sympathy or assistance or recognition of disease from anyone when I was younger it would have made living with this so much easier so I applaud you. Currently, most states are experiencing hysteria regarding use of pain medication even in clearly appropriate situations. In west TN where I live, it has become impossible to get appropriate care. Parents who have a child with EDS in pain. please look into your child’s future and know that if you want them to be able to have any relief from severe constant pain. you need to get involved in the fight to keep pain medication available for those without cancer who legitimately need it, can prove they haven’t and won’t abuse it, and follow all the rules. The other meds: antidepressants. anti-epileptics, etc., have serious side effects for many and don’t relieve pain at all for many but because they are not considered habit-forming, they are all that is likely to be offered. People in severe pain don’t get high from opiates, they just have less pain. Please excuse bad typing and grammar as sending this message is a real stretch for me. Thanks all and best!

    Holly - October 14, 2014 at 6:10 pm Reply
  4. I have EDS type 3 I’m 14 and looking for answers right now I’m going through a series of test to find them, and be honest is there an answer? Will I actuality get help or am I just wasting my time?

    Haley Buchanan - October 28, 2014 at 12:59 pm Reply
  5. Do you know any PHysical Therapists, Pain management doctors, etc. that specialize in EDS in adolescents in the south Florida area (West Palm Beach, Palm Beach Gardens,etc)?
    Thank you!

    Alissa - November 6, 2014 at 5:49 pm Reply
    1. Hi Alissa,

      I reached out to Dr. Goldschneider, and he regrets that he does not have any contacts in south Florida for the specialties you mention. However, he did mention that you might want to try contacting a genetics clinic in your area for a recommendation.

      Rachel Camper - November 11, 2014 at 11:41 am Reply
  6. I’m an adult who fits all of the criteria for EDS vascular type. I’m currently being worked up for RA and vasculitis, but none of the tests come back abnormal. I’m in the Cincy/NKU area and wondering who I should see for this disorder. My family doctor doesn’t really know much about it. My condition keeps getting worse and this seems to be something many docs are not familiar with.

    Nicole K - November 12, 2014 at 9:14 pm Reply
    1. Hi Nicole,

      I reached out to Dr. Goldschneider and he recommended that you contact someone in our Connective Tissues Clinic in genetics to see how they might be able to assist you. They can be reached at 513-636-4760 or skeletaldysplasiacenter@cchmc.org. More information can be found on our website: http://www.cincinnatichildrens.org/service/c/connective-tissue/patient-referrals/

      Rachel Camper - November 14, 2014 at 8:21 am Reply
  7. I’m so happy to see this site! I am 52 now. When I was 39, I was diagnosed with a heel spur. After heel spur surgery, the pain from the incision was so intense, I pulled out the stitches. The podiatrist sent me to a neurologist who dx’d idiopathic neuropathy. I didn’t believe him. I’ve been on a 12 year quest to find out what this is.
    I took a CRP class from a lady whose Mom had EDS. She saw that I was in pain, asked my symptoms and told me about EDS.
    How does one go about getting a diagnosis? I had never heard of EDS and I have been in the medical field for 20 years. I have an appointment with a Geneticist 4 hours from me in April.
    I would like to get help before April. I have trouble discerning all the ‘types’. I have severe joint and skeletal pain with spasms and chronic diarrhea. Thanks for any information and THANK YOU for this site!!!

    Weeza - November 17, 2014 at 11:21 pm Reply
  8. I am so happy to see that EDS is becoming more recognized. I am 46 and was just diagnosed this past summer. I have spent my whole life in pain and tired. I was always so flexible (especially my fingers and knee joints). My childhood was plagued by daily stomach issues and essential tremors. By the time I was in 7th grade the fatigue, spontaneous bursting of vessels in my fingers, Raynaud’s, pain, and Syncopy had set in. I had suffered from Plantar fasciitis all through my younger years and cried in pain every time I put on ice skates. My parents called it growing pains and all the doctors deemed me nuts. I never knew what a normal day was like and probably never will. When I went in for out-patient surgery three years ago to rid of fibroids the result was a right collapsed lung, muscle atrophy, and pain that wouldn’t quit. It wasn’t until then that the doctors suspected something was off. Even now very few people are sensitive to my daily torture, because I look healthy (except for days when I’m wiped-out). I was an avid runner and biker. I loved being active, but by the time I hit 30 I was wearing thin. No one has any idea what this is all about unless you’re living it.

    Sam - November 20, 2014 at 10:26 am Reply

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