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Zuly26 
well im 30 yrs married, and have 3 kids Abby 12yrs, JJ 8yrs and Anthony AKA Awny 5yrs who has EDS. he was first born and diganosis with Arthrogryposis AKA AMC, but he had the opposite of the AMC, AMC is contracted joints. he has the felxable in the joints, soft skin and elastic skin, he also has SEVER SCOLIOSIS( which will need surgery SOON) his spain looks like a S in x-rays. so about two yrs ago his orthropedic dr change with diagnosis to EDS and now we have to go and see the all the Dr's that we seen when he was first born and revaluate his condition. We live an hour and 15 mints from where all the dr's are located, and the spain surgeron there is not comfortable doing the surgery and sent us to San diego thats about 3 hrs away from us and now he wants the same, for us to see all the speaclist out there. its just a lil fustrating. i have never seen any other person or kids with this, i mean i remember Awny gentics even took pics of awny and took them to a dr's confrence to talked to other dr to see if anyone was familiar with this syndrome.
im a really bad writter so sorry if all this is a lil confusing. so if u could pleasae help with info, that will be awsome.
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Hi there i have EDS hyperflexible kind, my children do too, they where diagnosed when the oldest was around 9 and the youngest was 6. they are not as bad as i am i have no or almost nothing between the joints of my knee so this causes daily pain.i have trouble finding a Dr who knows what this is all about not many of the Dr.'s here know about EDS
emmiesmom
I understand your frustration because we had to go through the same process and if there is a Children's hospital closer to your home, seek them out. The Geneticist should also be able to refer you to some key people in your son's treatment. Physical therapy has helped my son and since your child has a spinal issue, it might help to have someone like a Physiatrist on board with you on this journey. That is a specialist in muscular problems but he helps with his care. I also have been told to look into someone who specializes in Sportscare Medicine. I have not yet done that because we go to therapy and it is helping. Look to your school district for support as well, they have special programs for children with motor issues. I will say a prayer and keep me posted on your progress! :)
DillonsmomErin