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Does anyone here have Ehlers-Danlos and Scoliosis?

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  • Does anyone here have Ehlers-Danlos and Scoliosis?

    Hello, I am new. My 7 year old daughter was diagnosed with Scoliosis three weeks ago (20-lumbar, 15-thoracic). She, along with my fathre and I, have EDS. Does anyone use a lift in there shoes for leg length discrepancy? WHat types of therapy does your child perform? Opionions on Pilates, yoga? Has anyone changed their childs' diet in any way? We live in New MExico (USA), and the accepted train of thought is "wait and see what happens". Extremely frustrating. My daughter is very tall for her age, and obviously has several years of growing left, I feel helpless! Where is the best facility, clinic or physician in the country where we can take her? Thank you for taking the time to respond, I really appreciate it!!!

  • #2
    Welcome to the forum.
    I dont' know anything about EDS but if your daughter has those kind of curves now, the wait and see approach seems ridiculous! You might want to check-out the thread on the Spinecor brace on this forum under Bracing. Parents have posted there and some of them have younger children. Spinecor is a flexible brace that was originally designed with younger children in mind. It allows correction while they are growing. They also have a website - the address is given in the thread.
    My daughter is 15, has AIS, uses Spinecor and has a heel lift to help even out her pelvis, doctors are thinking the heel lift might be helpful but are not sure and since it does no harm she is wearing it.
    Hope this is helpful.


    • #3

      I know of several kids with EDS. There seems to be a larger-than-usual number of children diagnosed with scoliosis at a young age who also have a connective tissue disorder of some kind (ie, EDS, Marfan's, etc.). In small children who have scoliosis and any suggestion of a connective tissue disorder, I think its important to have a pediatric ortho who has had experience treating these kids as the treating physician. Connective tissue disorders mean that she needs to be treated as a whole, not just as a scoliosis patient.

      Have you considered taking her to a Shriners hospital? I know several Shriners hospitals have physicians who understand the potential link between connective tissue disorders and scoliosis and the best treatment options. Waiting is very hard. Waiting is the right treatment for some, but not all. You need to have 100% confidence waiting is the right plan for your daughter.

      My Braydon is 10yrs old. He has congenital scoliosis, not a scoliosis caused by a connective tissue disorder. However, he does have a leg length discrepancy. Once his spine was stabilized with surgery (his hips were leveled, his hips and shoulders were evened out, his neck and pelvis were aligned, etc.) then he was able to benefit from a lift in his shoe. We confirmed that he has a 4cm leg length difference. Having a lift has helped him walk/run without a limp and be pain-free in his back and hips and leg. I think finding a good ortho who understands how all these things are connected can help you decide if a lift will be beneficial (btw, prior to Braydon's scoliosis surgery, a lift caused more trauma to his body because his hips, etc. were not well-balanced).

      Exercize is very good to help maintain good muscle strength. Being an active, healthy child is sometimes the best therapy (riding a bike, climbing, running, jumping rope, etc.) are great. Hanging on monkey bars, pulling up, etc are good ways to keep the upper body strong. If she isn't an active child, a good pediatric PT can help give you some suggestions on how to help her at home. Again, having someone who knows about connective tissue disorders would be best.

      Braydon does not have a special diet. As long as she doesn't require a special diet for the connective tissue disorder (or any other medical issues, mainly GI issues) she should be fine.

      I just read that you are in NM. Our ortho in SLC, Utah sees several patients from NM. Email me and I'd be happy to give you that information. Also, the Shriners in SLC is tops! They have many scoliosis patients who have connective tissue issues. My email is

      My best,
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc.


      • #4

        I was diagnosed with Scoliosis and one leg longer than the other during my 3rd grade. I wore a one inch build up shoe for 5 years before surgery was performed. The surgeons wanted to estimate how much growth was left before doing a growth arrest on my long leg. Measurements of my tibula, fibula the femur were all different. I had growth arrest on my long leg during my eighth grade year (1974). After the surgery I went from a 1 inch build up shoe to 1/2 inch and then 1/4 inch lift in my shoes...and eventually my legs were even and I didn't have any type of lift.

        In 2003 I had spinal fusion with instrumentation for my Scoliosis. After this surgery I had to go back to a 1/4 inch lift.

        Kindest Regards,