Hypermobility-What if you were told....?

SingleSue

Eldest's school allowed him to wear gloves in lessons too as his hands are permanently cold.

I actually found them quite approachable as he got older, when he was younger, they just thought he was a whingy child.

Indie_Kid

Jojo_the_Tightfisted wrote: »

DD's senior school have already been notified that she has HMS and is not going to be wearing anything other than good quality trainers for PE, even if they think plimsolls are adequate.

I'm surprised that they even suggest that pupils wear plimsolls at senior shool. When I was at senior school, (I left in 2005) we had to wear trainers for PE.

Jojo_the_Tightfisted

The Uniform regulations are quite clear - white plimsolls inside, studded football boots outside.

Judging by some of the lads coming out of the school, I think the rule can't really be serious - have you ever heard of size 14 plimsolls?

Just been buying the wretched uniform. The obligatory blazer cuffs down to the fingertips, etc.

Just found out that they also expect the kids to carry a £45 embroidered holdall to put into their lockers all day. A holdall is about as ergonomically designed as a breezeblock (and probably about as heavy once the books go inside it). So she will not be having one of those either - her spine has only just straightened up from her last growth spurt. She will have a backpack to spread the weight evenly and they can whistle for it. It'll only be seen for about 10 minutes each day, on walking in and walking out of the building.

I want her to conform to the uniform rules as much as possible, but there is no way I am marching up that hill because they've phoned to say she's sent her shinbone through the side of her foot due to the lack of lateral stability from their idea of suitable footwear.

shays_mum

Not got to big school yet, but she has to carry those old fashioned 1950's satchel over one shoulder, might need to get this looked at....... Am still awaiting appoints from the rhuemy, so will get them to back me up. JoJo hope your DD is ok?

bluebluecow

hello, fellow HMJS suffers. Just read and thought Id say hi. And Join in.

I have HMJS, knee dislocates lots and my thumbs, waiting for a knee op, agree with the constant pain, I have said I would have my knee amputated to get rid of the pain.

My son Jake 5, has HMJS, as well as autism, dyspraxia and gdd. He wears pedro boots with insoles to school

My dughter also has HMJS, but not to bad yet she is 3


Liz

Jojo_the_Tightfisted

shays_mum wrote: »

Not got to big school yet, but she has to carry those old fashioned 1950's satchel over one shoulder, might need to get this looked at....... Am still awaiting appoints from the rhuemy, so will get them to back me up. JoJo hope your DD is ok?

She's good at the moment, Shays mum, thanks. She's in the end of year play with a big part, so, together with the weather making her feel better, she's in good shape for the time being. As far as she's concerned, she understands that high school teachers are much tougher on the rules, but says she has no intention of hurting herself just to keep them happy. She has had it explained to her very clearly that this means she has to be pretty much perfect with everything else at school, or they will jump on her like a ton of bricks.

I think that you can get satchels with two straps? The school may not have considered this before.

shays_mum

hi bluebluecow welcome to our little HMS section!

Jojo, how did you explain to your DD what is happening to her without overworrying her?, my dd is 8 & is a very deep thinker, really got to be careful how i phrase things, any ideas from you guys is much appreciated x thanks in advance x will talk to them about the satchel with the loops.

Jojo_the_Tightfisted

shays_mum wrote: »

hi bluebluecow welcome to our little HMS section!

Jojo, how did you explain to your DD what is happening to her without overworrying her?, my dd is 8 & is a very deep thinker, really got to be careful how i phrase things, any ideas from you guys is much appreciated x thanks in advance x will talk to them about the satchel with the loops.

'You know I'm a bit wonky and my elbows bend back and stuff?'

'yeah, mine do that too, and my hands are like yours and my knees and my ankles...'

'That's right. It's called hypermobility and it means we have to be careful about the way we do things'

'I know, I'm not stupid'

[shrug]

SingleSue

shays_mum wrote: »

hi bluebluecow welcome to our little HMS section!

Jojo, how did you explain to your DD what is happening to her without overworrying her?, my dd is 8 & is a very deep thinker, really got to be careful how i phrase things, any ideas from you guys is much appreciated x thanks in advance x will talk to them about the satchel with the loops.

My eldest son only got the initial HMS diagnosis last October just as he turned 16, before that, we just said he was hypermobile..so that was no problem with him understanding. What he has found difficult since his HEDS diagnosis (just a couple of months ago now) is the thought of possibly passing it on to his children and the amount of jobs he would now not be suitable for...he dare not think about mobility problems in the future and is actively trying to ignore the fact he has anything wrong, which obviously causes more pain and more problems.

He has even gone as far as to stop his physio appointments, won't get in touch with the shoulder specialist to arrange things and is doing things which actually cause dislocations (no idea if it is intentional or not to be honest), especially in his shoulders..all because he can't accept he has HEDS.

Youngest has had a HMS diagnosis since he was just over 18 months old as he was not able to support his weight due to very wobbly ankles as he has grown up with it, he accepts he has limitations and takes care not to do things which cause him pain.

I've lived with hypermobility (or double jointedness as we used to call it) all my life, never thought to seek help for it as I just thought it was normal to get pains in my joints as I have always had them...along with the fact that everyone just passed it off as normal/not anything to worry about because it was nothing special to be double jointed. Of course, I now know differently after going through the things with eldest (no pc when youngest was diagnosed so didn't connect the dots) and I have now been told I have HMS and possibly even HEDS.

Not sure I have quite accepted it to be honest, the only thing I feel is guilt if the HEDS has come from me...it looks like I have passed it on to all my boys with varying severity.

So for me, youngest was the easiest one to deal with in letting him know, to him it was normal to have restrictions..eldest the hardest as he has never had the restrictions.

bluebluecow

Its nice to talk to you all and hear about it and how it affects your kids.

I wasnt fully diagnosed HMJS until i was 28, Id had my 1st child by then. I had always been in and out of hospital with dislocations, breaks and bends to bones. I ws taught to walk again, told I had lax ligaments, too much elastic in my bones ect lol. I used to have all the student physios when I was 9 crowding round me while they where going look how far her hip joint moves ect.

When I was 15 my left knee started to dislocate 15 or so times a day, I had a trans tibula trnsfer at 19 and enjoyed 3 yrs pain free, then it started dislocating again. As I am getting older more joints seem to want to pop out, and I have constant knee pain, on good days co-codamol and idometricin. On bad days tramadol + paracetamol + idometricin. I had meptid onc it spaced me out and acupan made me sleep 5 hrs.

How where your pregnancies, mine where ok till the end, then apart from spd, I had early contractions 36 wks with son 1, 34 with son 2 and 32 weeks with my baby girl. each time contractions where moniting high on monitor, midwifes would sy id have the baby, had contractions 1 ecery 10 mins till 37 wks when induced. After Jake my middle son, my consultant decided that my hmjs was causing the contrations, said that the baby was bruising the inside of womb and causing them but body says not time yet. I never know that it was genetic, until after my 1st.

Jake son 2 is the worse affected, has ankle weakness, without his pedro boots his ankles just colapse, he is like me and determind ot to let it stop him too much, since his new pedro boots he is loving pe(he wears his boots for that) and at sports day won most of his races lol


right stop waffling

liz