Hypermobility syndrome

mum_of_lewis

Thanks for your reply,

How do you cope with the diabetes and coeliac? Lewis has been a diabetic for a year and its been life changing,although it has been nice to see him put weight on as he was very thin,i had put this down to wearing a back brace 23 hrs a day for his scoliosos.


Right im going to have a positive day today and get out of feeling sorry for our situation!

Janette xx

wiccanlou

I think you should apply for mobility now as he now has needs in that regard as he has been diagnosed with something that affects his mobility and he needs equipment to improve his mobility e.g back brace, soon inserts for his shoes and then whatever else the dr's and physio's decide he will need to lessen the impact of HMS on his joints.

Also do you have a HC2 or HC3 certificate for him? he may be entitled to one as that will help with travel costs to hospitals. Have a look at the following link to see if you meet the criteria as there are two different types for different incomes http://www.nhsbsa.nhs.uk/1040.aspx

lynnysinger

im just pleased that your son has been diagnosed young. i wasnt diagnosed, but suffered pain in my knees from a young age. then went on to become a sports fanatic, swimming a mile every day, and playing high impact badminton.
now the arthritis is terrible in my spine , knees and ankles.
it could have been minimised had i had the proper treatment as a child, so well done for looking after your darling children so well mummy xx:A:A:A

jennie-jack

lots of physio can help int he long run. i have three children that all have this as part of their syndrome and it can be awful but they manage. lots of physio. painkillers and hugs in our house.

we do have a maclaron majoy buggy for the 7 yr old when she gets fatigued and the youngest has a wheelchair but thats partly due to other problems too like hyptonia and a brain condition.

my two oldest have terrible eye sight too. they all also had horrendous reflux that required surgery and they all have feeding tubes.

sadly we found out that i have it and it is hereditery but hey well its too late now.

swimming is very very good/

Racheldevon

Hi
The forum that someone else recommended is very good. I believe there's link to specialists that have a particular interst/expertise in HMS as opposed to the 'it's all in your mind/you have too much movement to have anything wrong with you' brigade!

Having seen professor grahame at UCLH (London - a long trip from Devon!) it's very much worth it in my opinion

Good luck with getting the support you need

MadelinesMum

mum_of_lewis wrote: »

Thanks for your reply,

How do you cope with the diabetes and coeliac? Lewis has been a diabetic for a year and its been life changing,although it has been nice to see him put weight on as he was very thin,i had put this down to wearing a back brace 23 hrs a day for his scoliosos.


Right im going to have a positive day today and get out of feeling sorry for our situation!

Janette xx

Hi Janette, I must admit it is hard to cope with T1D and coeliac, especially once she started school and could compare to other children. She is also a fussy eater which does not help.
She recent was put on insulin pump therapy (took a while to get better control cos she was allergic to the teflon in the canula, of all things!). The pump involves alot of carb counting and adjusting but Madeline is alot better on it.
Take care x

pulliptears

Bumping this to add experience.

Firstly, OP I hope your boy is doing well.
My story is a little odd. I began having joint pains at around 8 or 9, I was referred for x-rays, poked, prodded and diagnosed with 'growing pains'. The pain never actually went away and I spent many years just dealing with it to some extent. I also had a scoliosis so I often found myself with severe back pains.

My daughter began complaining of pains herself at the age of 12, shortly after she lifted a stack of heavy books at school and her arm became paralysed. It was the strangest thing, she underwent many tests and lots of physio and it was concluded she had somehow damaged the nerves in her shoulder with lifting. The whole thing laid her reasonably low for 12 months. Shortly after this she broke her knee, again laying her low for 3 months.

Because of this her muscle tone had vanished and the joint pain became steadily worse. We changed GP who studied the both of us and instantly diagnosed us with Hypermobility Syndrome. I've recently seen a Rhuematologist who has confirmed this and we are awaiting DD's final confirmation.

Hypermobility seems to be compounded by not exercising, so all those months she wasn't participating in sports left her joints weak and more prone to pain. The mystery paralysis was more than likely caused by DD's shoulder popping out of joint and stretching the nerve.

We both have good and bad days. We are now working on exercises to strengthen the muscles around the joints we struggle with. Stretches, good posture and low impact activities are key. We have a mechanical horse riding machine which strengthens thighs and improves posture which in turn improves issues with knees, back and arms.

I struggle mostly with my fingers, they do pop out frequently and its not unknown for me to wake up and have to pop fingers back into place, thankfully it rarely hurts though it really freaks out my OH

Another point to make is that its worthwhile mentioning this to your dentist. HMS is a cause of peridonitis so your son would probably benefit from a special toothpaste just to protect his teeth further.

Its a bit of a vicious circle at first, you need to exercise to get the muscle tone, but until you get the tone you do hurt. Easy for me as an adult to work through the pain but as a child its difficult. DD's school heat up a wheat bag for her to help her through the day, its worth speaking to the school also to see if that could help him on bad days?

One tip my rhuematologist passed on was to tie a pillow with ribbon in the middle to resemble a butterfly, sleeping with this under the neck apparently helps posture in the night and gives you less pain on waking.

Again, apologies for the bump and sorry this is so long, but having finally come through the otherside of this and now seemingly knowing so much about it I thought it may help.

brook2jack

You should mention HMS to your dentist anyway as it can make it very difficult to numb someone up as anaesthetics can have a variable activity. Often it just means using a different type , a bit more and waiting longer for it to take effect.

Toothsmith

pulliptears wrote: »

Another point to make is that its worthwhile mentioning this to your dentist. HMS is a cause of peridonitis so your son would probably benefit from a special toothpaste just to protect his teeth further.

I'd agree with this, but not necessarily any 'special' toothpaste.

With one so young, it's not likely to be much of a problem and just stressing the importance of good oral hygiene to both the child and the parent and getting into good habits would be the most important thing, to minimise any problems later on.

If arthritic complications do strike, then it's important to be able to find things like large-handled toothbrushes - or even electric toothbrushes, to make sure cleaning efficiency is maintained.

pulliptears

Toothsmith wrote: »

I'd agree with this, but not necessarily any 'special' toothpaste.

With one so young, it's not likely to be much of a problem and just stressing the importance of good oral hygiene to both the child and the parent and getting into good habits would be the most important thing, to minimise any problems later on.

If arthritic complications do strike, then it's important to be able to find things like large-handled toothbrushes - or even electric toothbrushes, to make sure cleaning efficiency is maintained.

Mine prescribes me duraphat as I'm Ehlers Danlos Type III Hypermobile and he feels it will help protect my teeth for longer. Thankfully I've not had anaesthesia problems.