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Aug, 13
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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. It’s so good to read resent news about EDS.
    My son is 30 and was diagnosed with EDS it OHSU (Oregon Health Science University) when he was 20.
    He is in constant pain and lately depressed that his primary care has said he won’t do anymore for his pain other than the oxycodon (he has been on the same dose for several years).
    He has not done any scans or x-rays to see exactly what damage he has to his joints.
    We know of some stress fx of back caused by sports in high school (before we knew of Dx) rock climbing, etc. because he was so tall and flexible, he was good at those types of things.
    Any suggestion about a doctor that is knowledgeable and will to go the extra mile for my zebra??. We live in the mid-valley in Oregon.

    Marta - November 10, 2015 at 9:25 pm Reply
  2. Hi
    My daughter is 2 yrs old now. But we recently had her mother tested for EDS. She tested positive. Well my main concern is I am noticing that the doctors in Virginia are confused in regards to my daughter. Since my daughter was an infant she was bendy and something was off. Also the doctors said she had colic. She would scream excessively at all hours. Eventually when she was 7 months old. We thought she had a seizure. We were wrong but the doctors noticed something was off. After that testing began, we have gone through the gambit. EDS hasn’t been brought to the table. Yet the doctors seem confused and want to point to SPD. Now that my daughter is communicating. The word ow is persistent. Weather pressure is a big trigger as well. I understand that the doctors won’t test my daughter until later. But how do I help her minimize the pain in the mean time?
    Concerned father
    Colonial Heights, Va

    James Zatowski - November 12, 2015 at 4:27 am Reply
  3. […] Coping With Pain From Ehlers-Danlos Syndrome (Children’s Blog) […]

  4. Thank you so much for your info and comments. I am 55 was diagnosed with Type 3 recently, my younger son was also diagnosed and we suspect his older (8 years) daughter also has Eds type 3. We live in Iowa, are there any doctors who you recommend. My son and I were diagnosed by Dr Trapane a pediatric genetics the at Iowa City Hospital. Thank you so much.

    Georgia Weaver - November 29, 2015 at 12:50 pm Reply
  5. Does anyone know of specialists in EDS and EDS pain management in the Portland, ME area? So far we have not found anyone. I am asking for a friend who was recently diagnosed, but has not found much help at the local pain clinic.

    Caryn Hasbrouck - December 4, 2015 at 5:30 pm Reply
  6. Great information, you have a wonderful blog and an excellent article.

    Shoulder Pain - December 9, 2015 at 3:12 am Reply
  7. […] source […]

  8. I have a new diagnosis of EDS at age 43 though I’ve had terrible pain and fatigue all my life. Doctors in my area don’t know much about it and many don’t seem to want to learn. I am a physician myself which doesn’t seem to help. Do you know of any doctors close to West Tennessee that are familiar with EDS?

    Holly Clowers - December 11, 2015 at 2:18 pm Reply
  9. My wife has terrible some nights. She is 32 and has been battling the pain all her life. Unfortunately it has been getting to the point where her entire body feels like it is on fire and the slightest touch is extremely painful. It is frustrating for me to see her in such and not knowing what I can do to ease it. I feel sad on these nights because I want to help her but feel that can’t. Because she is so sensitive to touch and extremely restless, is it best for me to leave her be and come to terms that EDS has control of her? Is there thing whatsoever that I can do to help her?

    Rob - December 19, 2015 at 6:08 am Reply
    1. I apologize for leaving out words in my previous comment. I am just typing with emotion because she is in such pain at the moment. She has been trying to sleep for hours but has only been tossing and turning. The current solution is to get out of bed, go downstairs to watch TV and wait it out in the most comfortable possion she can get herself into. Whether it in the chair, on the couch or on the floor.

      Rob - December 19, 2015 at 6:17 am Reply
  10. […] sources […]

    Coping with pain from Ehlers-Danlos Syndrome | - December 29, 2015 at 6:22 pm
  11. […] By:Kenneth Goldschneider […]

  12. […] Source […]

  13. My daughter is 10 years old has been having stomach pain for one year went to the doctor had all kinds of tests come back negative but she still complaining of stomach pain what can I do to help

    Gloria - January 11, 2016 at 8:59 am Reply
  14. I’d like to make a revision to your list of pain one with eds might have.
    Having EDS type 3 and multiple shoulder dislocations. The “participating in sports or aggressive actions” isnt really how it works with someone with EDS 3. Of course there are varying degrees of EDS, but for an example, I can go to sleep fine and wake up with my shoulder or jaw fully dislocated. There are a lot more varying degrees of hyper-mobility than most doctors I’ve come across will even acknowledge.

    Dustin - January 23, 2016 at 10:05 pm Reply

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