My 9 year old son has Ehlers Danlos and has had severe knee problems for the last year or so. He doesn't have the tissue fragility problems sometimes associated with EDS, just the loose joints. It started with an unstable hip from birth and progressed to his current knee problem. His MD says his ligaments and tendons are so stretchy they can't hold his weight and will only worsen with increased weight. He is in a leg brace and wheelchair at present. I would like to hear from anyone with simular conditions involving Joint dislocations/unstable joints, hips knees and therapies tried and outcomes. Our MD has mentioned cadaver tendon and cartilage implants but wants to wait till he is older. Does anyone in the country do this on children? Please reply if you have information. Thanks,LMeehan
06/25/2004 09:29 AM
bestpookie
Posts: 3
just thought i would let you know what i have been told....i have ehlers danlos type 3 or 4 (we arent sure yet) like your son i have had multiple problems with the knees and also the hips,shoulders,back,ankles and wrist others dislocate but not as much and not as often.... my knees are the worst (they dislocate daily) cadaver transplant isnt good for us because that does not replace the callogen that is defficient in us...its like putting on a band aid (its just a temporary fix) the donor tendon and ligaments will stretch out again thus not giving junior any real relief...plus even if you cant see the skin affectation doesnt mean that the tissue under is "normal" surgery on us is very risky (i know i have had many resulting in nasty nasty scarring and lots of infections) i dont know if you were told but pay particular attention to your childs oral health....he is probably going to develop teeth problems...cavities and such...are teeth are not like other people (oh and mom if he is saying the toothpaste hurts....LISTEN TO HIM he is not exagerating..we cant take the strong stuff ...they make bubblegum flavored now it doesnt hurt so brushing teeth is easier (still hurts but not as bad)and if he does need work make sure the dentist is aware of eds,,, fillings dont hold the same way (he may lose alot of them, lord knows i cant keep any) anyway i hope i helped a little... the best option for the moment for the knees would be to find a light weight hinged knee brace...this will allow him to still function (play run and all that (no jumping))but it will stabilise the knee and prevent the bone for dislocating (it will still sometimes sublux but that isnt as bad) please feel free to email me and anyone else with or needing info on eds im not an expert but i have had it for 33 years....(diagnosed 2 yrs ago) so ive learned on my own whats been happening to me (besetpookie@yahoo.ca
07/18/2004 01:30 PM
kelpharm
Posts: 1
Hi-I am 24 year old pharmacist and I was diagnosed with Ehlers-Danlos 7B at birth. I have had 4 hip reconstructions on each side, multiple other injuries involving stiches and other broken bones and several knee dislocations. I most recently dislocated my knee and when I fell, I broke my foot as well. Currently my doctors are at a loss as to what to do. I was always loose but now my knee cap dislocates when I roll over at night. I can move it with my finger now as if there is nothing even holding it in. I have had to deal with this disorder and it's after-effects my entire life but this latest one has complicated things as no-one knows how to help it or even heel it. I have even tr5ied the hinged braces and had a dislocation occur inside the hinged brace. I am constantly searching for any options to help this, especially now. So, I am extremely interested in anything anyone may know that can help. Thanks! Kel
11/06/2007 04:45 PM
santurchena
Posts: 1
Hello Kel,
I know it may seem drastic and will hurt your pride a bit, but have you considered using a wheelchair for a month and see whether it improves with rest?
I hope you feel better soon!
--Santurchena
06/18/2008 04:02 PM
andi91
Posts: 4
I was wondering how they diagnose ehlers danlos because it feels like to me that I have more then one joint dislocate at a time, my knee cap is always loose and my knee and wrist are the problems, i used to be a data entry operator but had to quit because of the wrist problem, and the fact that I was also diagnosed with Fibromyalgia and ME, and also mixed connective tissue disease. I can't walk normal because I also have ankle issues they swell for no reason and I have severe hip pain those also slip out of place from time to time, I am not sure what to do anymore its getting depressing. Any help would be appreciated.
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