Hypermobility syndrome

mum_of_lewis

Hi,

My son was diagnosed with this yesterday,Does anyone have any experience of this with children?Lewis is 9 and has Scolisos and type1 Diabetes.We have also just been referred to an arthritis consultant as they think he is in the early stages of arthritis.


Thanks
Janette xx

kingfisherblue

My son is almost 14 and has very hypermobile joints. He has a lot of pain and uses a wheelchair when we are out. He wears Timberland boots with special insoles from the hospital. Timberlands have a 'tilt' to help him with his walking (he also has other disabilities, and is flat footed and a poor gait when walking). The boots also support his ankles to some extent.

On Friday, we are seeing a physiotherapist after waiting for a year. Hopefully s/he will give some more information and advice.

The hypermobility has alreadyy caused problems with my son's ankles and is now causing problems with his knees. Next it will be his hips and then his spine, according to the paediatrician.

He cannot press switches without pain and a great deal of difficulty. Light switches are almost impossible (he can't manage the kitchen light switch at all). We have a Closomat toilet and he has a pad to press between his palms, as he could not press the switch that was on the ltoilet previously.

mum_of_lewis

Thanks for your quick reply

It all started about 3 months ago when Lewis was crying about sore ankles and wrists,I originally thought it was due to his diabetes,but when i phoned they said no,went to gp and they referred us.Seen a consultant yesterday who said that the pain could be coming from his hypermobile joints,but could also be the start of arthritis due to the pain and family history.We are now waiting on a referral to yorkhill to see an arthritis specialist and a physio appointment.

It just never seems to end!

Thanks Again
Janette xx

candygirl

My Nephew has HMS , and his eyes are also affected as he has poor muscle control in them:(He has to wear special lifts in his shoes too:(:(

kingfisherblue

My son also has eye problems, but I have never connected this with his hypermobility - I've never really thought about it in that sense TBH. My son has Down's syndrome and lots of children with DS have eyesight problems, so I have always assumed that it was because of this.

He used to wear Piedro boots, but Timberlands seem to be a reasonable alternative with the insoles. Good quality trainers with moulded insteps are helpful as well, according to my son's podiatrist (have I spelled that right?). They support feet and ankles better than most shoes and trainers.

Black plimsolls are possible the worst possible footwear for someone with hypermobile ankles. If your son has to wear these for PE, ask for permission for him to wear trainers - most schools will agree if you explain why.

wiccanlou

I have HMS but thankfully it isn't too bad but it does affect my hearing as the joints in the bones in my ears don't behave the way they should, I have sunken arches in my feet so have to wear inserts in my shoes, and have had umpteen joint injuries and now have early onset of pregnancy related pelvic girdle pain due to it.

Its all about learning what you can and can't do, I know I can't stand or walk for too long or my feet will be very painful, but most importantly is never lose the need for fun in life that you have as a kid just find a different way to access it.

This website is really useful http://www.hypermobility.org/

I hope that your son doesn't have arthritis and it is just the HMS causing problems xx

mum_of_lewis

Thanks,

I never even thought about his gym shoes,I will call school tomorrow and arrange a meeting with them. I feel so sorry for him as he wears a back brace 23hrs a day,has numerous injections a day and now arthritis and hyper mobile!

I thought 2011 was a bad year but 2012 looks like its just going to be the same:(:(
We are also waiting on appointment with the eye clinic and phsysio
Thanks Again for all your help its much appreciated.

Janette xx

candygirl

They thought he had nystagmus at first, but are now saying it's connected to HMS:(

wiccanlou

Mum of lewis its not a bad year its a year full of hope that they will find relief for him and help him learn to live with his conditions and how to overcome them to have the fullest life he can. There are grants and benefits you may be entitled to that will help with the adaptation he may need to relieve you of some of the financial burden. He may need a special mattress to help with his back which you could talk to the local PCT or OT about, get inserts for his shoes from the physio or get the gp to prescribe them, there probably is a host of things out there that will help you all enjoy life together again without his conditions holding you back.

Have you apllied for DLA for your son as it sounds like he would be entitled to it.

mum_of_lewis

Hi,

Thanks so much for your positive reply, just having a bad day yesterday,The iron lady is back from today!lol.

I recieve high rate care component but no mobility.

Thanks Again

Janette xx

MadelinesMum

Hi, my two young boys have hyermobility and often complain of joint pain. I think I also have it but have never been diagnosed (although the boy's physio says I probably have).

GP refered boys to consultant, then sent for physio who showed us how to do resisants exercises with stretchy rubberbands. We were told they may grow out of it, but I doubt it because I have not

I find the way I lay in bed messes me up, especially if I lay on my sides. My hip will go then my knee on one side. You might also find if your son does gets tired when doing exercise he will fall over alot because when you have hypermobility your body has to work hard just to stand up by tensing your joints.

My 6 yr old girl also has T1D & coeliac disease but does not have hypermobility.

Best of luck with the referal x