Ehlers danlos syndrome

taryn30

Hello Ladies,

My guy was just diagnosed with the classic type of ehlers danlos. I am hoping to hear your stories and any information you can share. What OT strategies have helped? What PT strategies?
If your child does have it, how old are they? What type do they have? Do they experience pain? What has helped them? How much therapy do they receive?
I look forward to hearing from you! Thanks so much!

realisticdreams

Hi, sorry I just saw the other posts.  Both girls present differently, DD2 says she's tired alot while DD1 has a lot of pain.  It is very much based on the amount of physical activity she does.  (she may also have something neuromuscular going on and/or need another spinal surgery).

I don't know anything about the murphy's ring, but if you are on facebook, they have some EDS groups that are awesome.  I mostly just go to the local VA group because it helps with doctors and stuff, but the main ones have been helpful as well.

DD1 is 4.5 and DD2 is 3.  You have to be careful with PT because sometimes it is too aggressive for kids with EDS, the PT needs to be well educated on EDS.  Both girls have the classic type. People with EDS can have spinal cord issues, chiari's, POTS, just to name a few.

taryn30

Thanks for all the info! In my research, it seems to be a progressive disease. Are the symptoms increasing as they get older? More pain, more tired? Do they receive PT and OT through the school? Do you do private PT and OT? What seems to help them?
Thanks so much for your reply. I feel less alone in this.

realisticdreams

I don't know about the whole progressive thing, but it makes sense because your joints are more stressed the older you get.  A lot of people on the facebook groups I go to aren't diagnosed until they are alot older.  Most have had some type of surgery for various issues.  I don't really have much to compare too since the girls are still so young.  We do not do PT or OT through the school for either child.  We used to do private PT for other issues.  The school system here is really hard to get into for anything if the child isn't cognitively delayed, and they are not.  

I do think a child with EDS should have a 504, IEP or medical management plan.  I am really trying to get an IEP for when she starts K because of her other medical issues.  DD2 would probably do fine with a 504 or med. management plan as she isn't as affected.  

This is relatively new to us as well, DD1 was dx late last year and DD2 this year.

midnattdodsfall

I didn't start having problems with my EDS until I was 13.  I get really bad joint pain and I did miss school because there were days where moving hurt too much.  I have found that swimming helped and working out/staying active has helped.  I also got a portable tens device (a small device that sends electrical stimulation into the muscles helping them to relax and it doesn't hurt it has different strength settings) for the days where it hurts to move, it's amazing.  Main thing is just being careful and there is the potential for degenerative joint disease just because of how frequent dislocations can happen.  I have also wound up tearing my rotator cuff a few times as a result of injuries to my shoulder.  I also tore a ligament in my ankle by stepping wrong so yeah.  If the muscles are kept strong around the joint it helps keep them more stable and just watch how your kiddo is sitting/posture, it will help him know where they're supposed to be and be more aware of them starting to slip.  I still played soccer, danced, did martial arts, climbed trees and all the normal things a kid does.  I did have to do physical therapy so I could learn the exercises that were safe for my joints but they helped and found that pilates helps a lot too.  I try to avoid pain killers unless I absolutely can't move and nothing else has helped.  Just makes sure he stays active and it will help.

2000cougar

I have it and my joints have become significantly worse over the past 10-15 years. PT has been a nightmare for me. You need to find someone that understands EDS. I had a PT dislocate my knee and another one dislocate my SI joint. 

I found a PT that does not have a single weight in her office. All of the exercises she had me doing were against my own body weight or a resistance band. It's not the "gym" experience I see in so many PT offices. She is the only person who didn't hurt me. The first thing that she did for me was to assess my feet. Even though I didn't have a foot problem, because my feet slightly tipped in, it was causing issues all the way into my pelvis. She's the type of PT you need!

I didn't experience any of the pain I have now as a kid. I didn't have the stamina of my peers and I was never really athletic. I didn't get the dislocations until I hit my 20's. I've been told it should get better when I hit the age that your joints get stiffer. 

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