"Suffering the Slings and Arrows of Outrageous Fortune"

As promised, here is the link to the video of  Cincinnati Children’s Live Chat on Pediatric Pain Management for Children with EDS that took place on August 20.

Also, here is a post by Dr. Neilson on the CCHMC blog about EDS.  And a post by Dr. Goldschneider discussing pain in EDS …

Finally, here is the video about the young lady named Hallie that Dr. Goldschneider mentions in his post.

It has been a good couple weeks for EDS awareness! Again, thank to both of these doctors and Cincinnati Children’s for working so hard to raise awareness about EDS.

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Comments on: "The Promised Link" (6)

  1. Just a note of thanks for your blog in general, and the links to this video specifically. Our 11-year-old daughter was diagnosed with EDS a few months ago, and while her symptoms are fairly mild so far, I appreciate hearing from someone who has traveled this path before us, so I have an idea of what might be around the corner…

    • Thanks for commenting! I am glad that sharing our experiences is helpful for you. I think the most important thing to know is that each person with EDS is so individual in the way it manifests. Each path is different and hopefully your daughter will not get as sick as Emily has been. But, now she is doing better and hopefully our experiences offer hope for all those kids who do get really sick. It can get better!

      Thanks again and good luck to you and your daughter!

      Beth

      • Courteney said:

        I am loving all the information & awareness!! Myself and both daughters have it. I suffered greatly most my life, but for my girls it will be very different! They were diagnosed at age 6 1/2 and 3 1/2. It’s a blessing to know already. We are doing many things to keep pain & joint damage as low as possible.
        I can tell you from my personal experience, all my symptoms & injuries got worse with adolescence- just like they say. Brace for that. Good luck to everyone!

        • I am really pleased that Cincinnati Childrens has put EDS out there for everyone to see. Awareness is so important. I still wish that my daughter had been diagnosed earlier – although I don’t know it would have made a difference, I can’t help but think things could have been different for her.

          She was diagnosed when she had just turned 12 and Dr. Tinkle very plainly told us it would get worse before it got better. It actually didn’t because she was already pretty much at the bottom by then, but that was plenty bad! She was in a wheelchair and more or less home bound. However, now she is going on 15 and after almost 3 years of hard work and the right meds, she is better. So, puberty can be very, very bad with EDS but we are an example of how it can get better. People need to be aware of how bad it can get, but have hope that it can get better! I had doubts when she was at worst and it is such a relief to see her starting to live life again!

          Good luck to you and your girls – I am so glad that your daughters got an early diagnosis. It may change their lives! They are so fortunate – both to have the diagnosis and to have a mom who understands and can help them through it all!

          Thanks for commenting!
          Beth

  2. Angie said:

    My daughter is 15 years old. She was diagnosed with Ehlers-Danlos in October of 2013. First, by her Pediatrician and then by Dr. Jennifer Huggins of Children’s Hospital. We were referred to the Pain Management Team, where we saw several doctors at once, which was an overwhelming experience. The main Doctor we saw was Dr. John Rose, who quite frankly was no help at all outside of giving my daughter a drug to help her sleep at night. From there we were referred to Physical Therapy which she is doing 2-3 times a week, mostly as tolerated, which lately has not been tolerated very well at all. She is in pain everyday of her life. Therapy is not helping at all. She had a horrible episode 2 days ago, which included swelling in the right hand, numbness from her elbow to her right hand and extreme pain throughout the rest of her body. She was also having trouble breathing. At that point, I called Dr. Rose’s office, only to get a recording to leave a message and someone would get back to me with in 48 HOURS. Seriously? I left a message, hung up the phone and proceeded to call our pediatrician who was gone for the day. I spoke to another Doctor in that office and he told me it sounded like she was having anxiety. My daughter had severe anxiety issues when she was younger and I and the rest of my family clearly know when she’s in a state of panic or anxiousness. Today, I received a call back from Dr. Rose’s Nurse Practicioner. She suggested that she see a Pyschologist to help her learn different techniques to deal with the pain. She knows all the techniques to try and deal with the pain. We’ve been through all of the exercised with a person who specializes in alternative medicine such as acupuncture, massage, yoga, breathing etc. My daughters state of health is declining rapidly. She’s barely able to make it to school and if she does, she has to push through just to make it through the day. There is no doubt that she has Ehlers Danlos Hypermobility Type. She has every sign and symptom of it and unfortunately I am the one who passed it on to her. Until recently, I used to joke with her about inheriting my “backwards” arms, until she was diagnosed. When I was growing up, while having this condition my entire life, I never had any pain and the hypermobility was never considered a “condition”. I was simply just “double jointed”. In addition to EDS, I strongly believe that there is an underlying cause of the severe pain she’s is in. Possible Rheumatoid Arthritis? I don’t know…. Unfortunately I am not a doctor. When I addressed the possibility of her having JRA, I was literally blown off, only because her RA factor tested negative. My husband’s side of the family has severe Rheumatoid Arthritis and every one of their RA’s have tested negative most of their lives.. I have also done research on this and most Doctors who have written articles, etc. on this topic have stated that RA factors come back negative often, ESPECIALLY in children. Doctors did not want to hear about that. I admire Cincinnati Children’s Hospital for the work that they do with Organs, Cancer, etc. But as far as my daughter’s case goes, we have gotten absolutely no help at all, outside of Physical Therapy, which there are more days that she can not perform in therapy, than there are where she can. I am at a loss. I know all parents hate to see their children in pain and that I am not alone. I also understand that we are lucky in the fact that she is not dying, does not have any form of cancer, etc. I am thankful for that everyday. But, on the other hand, the fact still remains that we have wasted so much time, while nothing further has even been remotely investigated to see if there could be other probable causes of her chronic pain. I simply do not know where to go from here. I refuse to accept that she has to spend the rest of her life in pain and possiby ending up in a wheelchair or some other apparatus in order for her to get around. THERE HAS TO BE SOMETHING MORE DONE FOR THESE KIDS! This is ridiculous. If anyone has any information that could possibly help us take the next step, please let me know. I am willing to travel the world to figure this out. As for now, she is in a horrible state, barely able to get out of bed because the pain is so bad. And the Doctors have the nerve to tell me, that there is nothing they can give her for pain, because the meds don’t seem to work on this type of pain. I call that BS!.. I have a hard time believing that out of all the millions of drugs that are used for other pain symptoms, not one of them can be even tried, to help her get through a day? This is wrong. This is just so wrong on so many levels. It’s a shame that Doctors cannot be doctors anymore. I guess mostly due to the insurance companies? I don’t know. But I do know there is someone out there somewhere, who if nothing else, but out of the kindess of his/her heart will help her. I will not stop until I find an answer. If anyone has any input at all, please let me know. Thanks for listening to a beyond frustrated, very sad Mom who is just watching her daughter lose her physical abilities little by little everyday. So, so sad.

    • Angie,
      I am so sorry your comment slipped through unanswered for so long. I am trying to catch up on answering comments and just found yours. I apologize!

      I relate so much to your story. Your daughter sounds so much like mine! Obviously, I have no great answers for you – even though my daughter has made real improvements, she still struggles terribly with poor sleep and fatigue. I agree with you that kids who are in pain are largely ignored and it is tragic. We dealt with the pain clinic and Children’s and eventually parted company. We were fortunate to find a local pain doctor – one with a good rep and who treats patients with meds as needed and does not do unnecessary procedures. I don’t know if this could be an option for your daughter – I really do sympathize with your situation.

      I guess the best advice I can give you is just hang in there. I know there are days that it feels like you have no strength to hold on another minute. I know it feels hopeless. But, life with EDS is a marathon, not a sprint, so you need to settle in for a long run. Keep pushing for answers, especially about the RA or anything else you suspect. Follow your gut – a mother is usually right! Keep looking for doctors who can help. Keep believing in your daughter and take care of yourself.

      I wish I had more answers for you, but I can only offer to pray for you and your daughter.

      Beth

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