August 6, 2013 at 2:22 pm #516dab78Participant
5 years ago he was playing volleyball at the beach and pushed off with his foot and when he landed his great toe didn’t work. when for mri’s neuro and podiatrist did not know why. went to therapy for a while and it started working again. about 3 weeks ago my son complained about his ankle hurting badly. then out of the clear blue sky his big toe stopped working again. pcp has know idea why. sending us to neuro again and ortho podiatrist? he was dx @ the age of 3 @ the local children hospital as being developementally delayed! i told them his wasn’t-they did have to teach him how to use the muscles in his mouth and tongue, but once they did he’s way above average IQ. he is my child that broke arm-collar bone x3-fingers. he is hypermobile not alot but for a guy he’s tons more than my husband. i’m trying to get dx’s for heds, POTS dysautonomia and other things. i’m just worried the local people will mess something up. i’m having enough problems with experts at cleveland clinic for me. he also did not walk until 14 months.anyone with ideas? thanks deniseAugust 7, 2013 at 9:51 pm #4066charlie1Participant
Hi Denise. I’m sorry this is happening to your son. I have a 25 yr. old daughter so I know how you must feel. We don’t want our loved ones experiencing things such as this, at any age. Not trusting the local professionals is an issue all on its own! Been there, still there…
All the best to both of you while you travel this journey.August 7, 2013 at 10:44 pm #4068Lab-Scientist-LadyParticipant
It does sound like EDS. It is hard to get an diagnosis, but make an appointment with a geneticist and give them a complete medical history of every thing you can remember no matter how small. He may have a nerve that is getting pinched by his hypermobile joints. If you can get some physical therapy to relieve the pressure on the nerve maybe regain function of his big toe.August 8, 2013 at 5:56 am #4070dab78Participant
thank you both so much! i thought about taking him to my geneticist but just wasn’t sure on what to do. times like these just having a second opinion from you guys makes the world of differance.(saying what i’m thinking is great support.) thanks deniseAugust 22, 2013 at 12:01 am #4163Lab-Scientist-LadyParticipant
Hi, Denise are you and your son doing any better?
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