Discussions By Condition: Muscle conditions

Ehlers Danlos Diagnosis for my 10 YO - HELP

Posted In: Muscle conditions 3 Replies
  • Posted By: momto4sweeties
  • February 13, 2010
  • 02:13 AM

My 10 year old son was diagnosed 2 weeks ago with Ehlers Danlos Syndrome. I'm kind of freaking out (sorry). I am brand new to this forum, but there seem to be some really nice people here, so I'm hoping for a bit of help.

Generally, his symptoms are hypermobility of joints, slightly blue sclera, loose skin, can see his veins through his skin on his chest, bruises easily, fatigue, tummy pain, leg pain, can't bend and touch his toes due to pain and stiffness, and he has an indentation above his sternum.

A rhemotologist diagnosed him, but hasn't yet told me what type she believes he has. It seems like he has some of the symptoms of more than one type. Since I know that's impossible, how do I know which type he may have or what to watch for? Of course, I knew NOTHING about Ehlers Danlos before her diagnosis so I didn't even know what to ask at the last appointment. He doesn't go there again until the end of March.Ehlers

He is having additional testing including visiting an ophtholmologist, having an EEG w/ Doppler and an MRI (Bone Density/ DEXA Scan). Those tests are within the next 2 weeks. Until then, I'm trying to gather information and make sense of everything. However, ALL the data I have assumes that I know which type he has.

I am even open to guesses!!! Help, please? :confused:

Thanks if you are able.

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3 Replies:

  • Myself and two of my four children have Ehlers-Danlos syndrome hypermobility type. My son who was diagnosed last year also had a lot of problems with his stomach. After testing they found he has a severe case of reflux. This can be common in people who have this disorder. Also bowel problems. Hang in there with all the testing, but its all for a good cause. They need to rule out the more severe type of this syndrome.As far as doctors to help, I have yet to find one. All the issues we have seem to be dealt with individually instead of in a whole. You'll have to get used to the dr visits unfortunatly. Eye specialists to check for detached retena, Heart dr.s for the possibility of mitro-valve prolapse.( I have this, but so far neither child does.) Orthopedics for the constant dislocations and sprains. Physical therapists to try to strengthen muscles to help keep joints in. Be sure to ask the optamologist signs to watch out for with retena detachments. the earlier its caught the better. Also a 504 plan at their school is ideal so that gym class will not cause undo stress on thier joints, and accomodations can be made for class exchanges. roller bookbags or even the school providing books to keep at home to keep shoulders and backs from being injured. Not sure if any of this will help, but stay strong. Mother of two with EDS hyp type
    Anonymous 42789 Replies Flag this Response
  • Hi, I'm sorry to hear of your plight.Since you are asking these questions then you probably are not the one who passed this on to them, you might ask your spouse or his family members if anyone else has it and is so possibly they can help show them tricks they have learned how to deal with it.I inheirited mine from my father but he died when I was 14 and I was the only one of the 5 children to get it so I have had to learn for myself.Onset can arrive at different ages sometimes into your 50's or 60's, personally I can remember by 8 years of age thinking that I was placed on this earth as a torture testbed to see how much pain you could deal with before you would kill yourself.The best thing you can do is realize that they are built differently than you and if the pain has started to get to them that mentally they could be going through ***l that you could never imagine.Since I have lived with mine for over 40 years I know firsthand what it feels like to be serving a life sentence in a body that you can only escape by death and that it does not seem unreasonable to you to wish to die to end the suffering.Activity is a key, we are normally prescribed work as a means to keep us busy so that we are not mentally having the opportunity to dwell on the pain. the best things you can do are to stay active or unconsience (sp?) .One thing I have found is that I do not feel the pain when I laugh, so I do try to spend as much time as I possibly can joking because those moments of laughter are the only vacations I get.Dwelling on it only makes it worse so try to keep their minds busy by reading, watching videos, etc. and I found that I tend to do better with fresh air and sunshine so if possible maybe try and see if letting them read funny stories in the sunshine can help brighten their spirits and if so remember to pull that tool out of the box when flare ups are really bad.And any activities where they can have success can be helpful, that little warm feeling inside when I have done something worthwhile helps to offset a life constantly plauged by futility.I wish you nothing but the best, and please give them a little hug from me!
    Anonymous 42789 Replies Flag this Response
  • Please try not to freak out about your son. It it a condition that he would have had from the moment he was conceived. I sounds like it is type 3 which is basically more about joint extendability and laxity. But I'm not a doctor so I cannot be sure. The following web page has a classification grid which you may find useful.http://en.wikipedia.org/wiki/Ehlers-Danlos_syndromeAnd if you google Ehlers Danlos Syndrome you will find some good avice on supoportive sites that encourages choices in lifestyles so that it makes living with the disease a bit easier. I have type 3 and because my knees are so lax I am in a wheelchair. I am having physio which is useful and my physiotherapist has the same condition too so that helps. I amd my sisters suffer with it and have severe pain. However, my brother can just fold up his joints as they are so lax and he can fit into a box. It tends to cause girls more joint pain than boys.My nieces and nephews have it and this is because it is genetic. So it may be wise to discuss as he becomes a teenager, that if he has a baby with someone, that baby may well have his disability. It isn't definite but there is a higher chance of it.It is important to do specialist exercises and not the curriculum Physical Education at school as that could make it worse. Swimming as it is low impact is good for building the muscles around the joints therefore increasing the chance of stronger joints.Hope this helps
    Anonymous 42789 Replies Flag this Response
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