benign hypermobility support groups

[secretgardin]

does anyone know if there is a support group on mn for children with hypermobility? ds is 8 and was diagnosed very late. he had delayed walking and speech difficulties as a baby and toddler, but we kept on getting fobbed off by our gp until we moved a few years later and joined a new surgery. i felt really bad when he was diagnosed, as sometimes i got so frustrated when he wouldn't try something challenging, poor mite we have been on a waiting list for physio and occupational therapy for over a year and a half now ds is left handed as well, so the school has thrown up their hands as they can't help, which means that although he excels in reading and maths, anything physical like colouring, pe etc, he is lagging way behind. on his school report it said that he should make more effort into joining up his words even though they know of his condition and how difficult it is he gets extremely frustrated and although i try and strengthen his joints by swimming and hand gym etc(he is very tall and skinny) it is affecting his relationship with other children who don't know him, as he doesn't have the strength to climb things very well and get snarky comments (mostly smug mums and dads) when we are at the park, as there are 3 yo doing things he's "supposed" to. i feel like getting a t-shirt printed with "hypermobile, so trying 10 times as hard as you" just to get the message across. it would be nice to speak to other mums in the same situation as i don't know anybody else and information is varied online.

[chuckeyegg]

There is the Hypermobility Syndrome Association forum. Everyone there are very helpful and understand the problems. Here's a link here

[TitsalinaBumsquash]

I am severley hypermobile, the origional contortionist here!

I feel for your DS i really do, i used to excell a all things physical as a child i could bend myslef in half backwards, literally, no however i can bartley walk where my knees are crumbling.

I'm not sure what advice to give you but am happy to chat about it, it can be a horrible thing to have and its sadly not taken very seriously. I wasn't diagnosed untill i was a teenager when a physiotherapist called in all her collegues to watch me bend

I think starting physio as young as your son is he should be fine if you keep the excersises up, it was a bit to late for me on the physio front.

[TitsalinaBumsquash]

now however i can barley walk where my knees are crumbling.

[TitsalinaBumsquash]

Also i find swimming is a great help to me to relive stiffness or aches, i go twice a week. I also used to do hydrotherapy when i could afford it so maybe worth looking into?

[chuckeyegg]

I should add I contacted them because DS is very mobile in his joints, we have had no formal diagnosis and he is only 2.9 so we may have to wait. I agree sometimes other parents seem to like to see another children struggle as it makes them feel superior.

You may want to post something on special needs as well, the ladies on there are lovely.

Best of luck x

[secretgardin]

TitsalinaBumsquash - thank you for the advice, i'm really sorry to hear that you are in so much pain and wish as well that this condition would be taken more seriously. ds is very flexible as well, but because he is so loose limbed, he doesn't have the strength to support himself very well, his grip is extremely loose and his ankles move so much that the pediatrician described it as trying to walk on a ships deck, hence why he holds on for dear life when going down steps. it's trying to find a balance of enough excersise, but not too much as it could cause injury. i will look into the hydrotherapy.

chuckeyegg - thanks for the link. i hope your little one gets diagnosed soon as it's not nice knowing. sounds horrible, but i felt a weight lifting of my shoulders when my ds was diagnosed. i know a lot of people were blaming me, including myself for him not being able to do things that other kids find simple.

[Phoenix4725]

hi I have hypermoblity and so does my ds he was dx at 2.6 now unfortunatley he si ata severe end of scale but and is due to get afosto help with ankles and protect his knees rom more damage .He uses a wheelchair to get around butnot all children are affected the same . but i was glad someone finally agreed that opps he does have a problem ,

Can i suggest you pop over to the sn boards theres a fair few of us on thei with hypermobile children affected to differnt degrees

if you can affrs i would reccomend couple of private sessions with physio the nhs lists are extremley slow