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Ehlers-Danlos Syndrome User Group
Trying to help my 6 year old son.
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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Trying to help my 6 year old son.

My son has recently been diagnosed with Elhers-Danlos hypermobility type. I have so many questions especially since we are expecting another baby in Feb. His symptoms started when he started crawling around 6 months old. He would cry. Pain cry. He had weaned himself from breastfeeding when I had to go back to work and I thought he just had really bad tummy gas or pain from the formula. We switched it around a bunch, gave him gas drops. Nothing seemed to help. His pain crys were usually when he had been sleeping. This continued and when he was two I took him to a pediatric gastrointerologist. I explained that I noticed that malox didnt seem to work but when I had given him paid meds they seemed to do the trick? He explained that he must be having pain somewhere else in his body for pain meds to be affective since they would not work on a stomach ache. I didn't know what to do at this point. He visibly looked like he had tummy pain at night when he woke up because he would tuck in his legs and roll around in pain. Shortley after this he started to verbalize to me when he woke up in pain that his feet hurt. I could not believe it. I honestly didn't know if he was telling me the truth at first. His feet??? I took him back to the pediatrician and she told me he had flat feet. That he may need orthodics. He still woke up 3-4 times a week screaming in pain and I just gave him pain medication as he needed it. When he was 4 we signed him up for T-ball. This was really the first time that I observed him doing the same activity with kids his age. I realized he couldn't run very fast compared to the other children and that he ran kind of funny. He pumped his arms so hard but didn't seem to go very far. He also was the only child who spent most of the time laying flat down on the ground in the middle of the field instead of playing the game. He was just so worn out so fast and his pain at night hit an all time high.
       I kept addressing my concerns with his Dr. but it just seemed to go nowhere. She would look at his legs and his feet and tell me the same thing. After the T-ball I decided to research it on my own. I started looking for activity associated pain and night time awakening and that is when I discovered hypermobility syndrome. It seemed like it fit him but I am not a Dr. but still I got really excited and decided to call his pediatrician right away. I told her that I had a hunch on what may be the problem, she also had my results back from an Xray I begged her to do of his legs and feet and they came back normal. I saw that hypermobility was listed under rheumotology and asked her to refer to me a specialist. We saw one and he was officially diagnosed with hypermobility but they told me he did not have Ehlers-Danlos. Yet they gave me paperwork that states it is type 3 of Elhers-Danlos. This is where it all gets a little confusing. After more research I realized that really alot of the characterstics are prevalant with my siblings and myself. I never woke up in pain but I have joints that pop out in my ankles. I never thought of it as anything serious. My sister has the velvety stretchy skin and so does my mom. My other brother did wake up with joint pain at night and even when my mom was pregnant with him his joints would pop in the womb.
         My concern is that my son is still in pain. It took me most of the 6 years of his life to even get to a diagnoses and I am not really sure that we are right. He had a really bad night last night and he goes to first grade. I hate for him to miss school but I hate for him to lose sleep. He takes naproxin everyday. His pain is not just at night anymore. He will have episodes in the day too. His feet are flat and turn out. He has been in physical therapy only once a month right now to streangthen muscles. I just wonder if I am right. The Dr. told me that the only genetic test available would have to be done on a research basis and that is if there is a distinct genetic marker present. I wanted to know if anyone else has done this type of testing and if it helped or changed anything? What about other testing such as the core tissue sample and any advice on other things I can do to help him. Is it his joints that are hurting or the connective tissue? I hate seeing him in pain. I recorded a video of him waking up at night and put it on youtube because for a long time when I told Dr.'s that his pain only seemed to happen in the middle of the night they all thought I was crazy. This has been such a long road already and they tell me that things will get better as he gets older and stronger but from what I hear things get worse. Any help would be greatly appreciated!
1 Comment
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620923_tn?1416285879

  Hi....when I was young and my mom took me to the Dr they told her it was "growing pains" I was 48 when I finally got my EDS dx.

So u r doing quite well for ur little guy so do not feel bad, it can take time to get answers  and u r on the right track.

There r some EDS specialists and once u have an EDS dx, they will send u for a skin biopsy to see which type as there r sooo many types,.Some Drs feel there is a diff btwn joint hypermobility and EDS but it is really too similar to dispute.

SO u need to look where u r for a rheumatoid Dr that specializes in EDS.....

Some with EDS have other issues too, so, u may want to have him tested for some of the related issues as well, but first find the EDS rheumatoid Dr in ur area and go from there.
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