Wheelchair for hyper mobility

[Asdmums]

About a year ago a couple of local mums held a little fundraiser to get some money to help another local mum buy a special needs pushchair for her son.
The 7 year old is hyper mobile and has pain when walking to/from school (about 20 mins). He wasn’t entitled to help from wheelchair services as the threshold is so high. He also couldn’t get one from a charity as he isn’t under consultant care and isn’t seen by a professional who can write a letter of support.
The mother is now asking for help choosing a wheelchair as she wishes to upgrade as her son has nearly outgrown his buggy.

I have no doubt that the boy struggles when walking long distances but AIBU in thinking that using a wheelchair should be done under the supervision of a professional (in which case a charity would help fund and maintain the wheelchair)?

I personally feel that using a wheelchair without proper advice can potentially cause more problems, not using muscles can make them weaker and a lack of exercising can lead to weight gain which then makes walking harder.

It’s difficult to say if yabu or not but I will say it is incredibly hard to get diagnosis for hypermobility disorders, specialists are few and far between and a lot of consultants won’t diagnose children because it is a ‘label’ so children go for years in pain with nothing done as a result.

If you are friends with her, maybe point her in the direction of the HMSA and they can advise on how to get appropriate free care and support.

Having said that I’m currently saving for my private consultant appointment as I can’t get the treatment I need on the NHS and that’s with a diagnosis, so...

We bought my son a cheap wheelchair as we have too much in savings to get any help. He only needs it for days out as has been provided with a walker for school. I think that it's harder to get a wheelchair then you think and if the child needs something to sit in rather then something made to measure then it's a lot easier to just buy one.

Wheelchair services will only provide a chair if the person needs it can not walk across a room, so for many people it’s just not an option.
Most people replying to her post asking for options of a wheelchair she had chosen directed her to charities they had used but she said she’s not eligible as she’s not got a letter of support.

Whilst I know how bloody hard it is to get help for children who so desperately need it, if nothing has changed in the child's care since a buggy was purchased for him, I would be wary of something like the gyspsy rose Blanchard case (not expecting the child to murder their parent but the munchausens by proxy or whatever it's called now).

I know how hard it is because we have fought for appropriate care and support for our ds and are now starting the same with our dd, who does have hyper mobility but thankfully in her upper body, so writing and dressing is an issue.

I think sometimes people like the attention. Because of the battles we have fought, I am very clued up on where to ask for help locally. Therefore I direct people to those places if they ask. People who then choose not to follow up because they haven't got x y or z then don't get any more of my time on the matter.

If this mum hasn't got a letter of support, she needs to be the squeaky wheel to ensure her child gets everything they need. It's not just about a wheelchair to be able to get around. If their hyper mobility is that bad then I suspect they would need an ehcp to allow them to fully access the school curriculum, trips out etc where an additional person might be needed to push a wheelchair around for them. Additional time in tests if it affects their hands and writing, appropriate therapy to ensure muscles are being used effectively.

I know conditions like EDS are notoriously difficult to diagnose and get treatment for. But there are many groups out there who would help direct people appropriately without just tapping up joe public for another hand out.

And I'd assume dla was being applied for as well. Again, difficult to get but there are groups who will help write the forms to achieve the best possible outcome.

Not only will wheelchair services not provide a chair if you don't need it outside the house... but if you DO need it inside the house but cannot use one because the house layout prevents it... you still get turned down.

However they DO typically provide them for children to access education, so that seems a little odd.

You are right that self propelling a badly fitted wheelchair is bad for you, actually self propelling even a well fitted well balanced chair is still bad for you - my rotator cuffs are knackered and I now have constant pain from them...

However you are wrong to assume wheelchair services a/ are the only ones who can correctly fit and balance a chair or that b/ they would do so.

Typically they will take measurements, and supply the nearest chair that fits that person - they rarely look at HOW someone moves or sits in any detail. Often the chair will just be delivered to you and its up to you to adjust it (if it can be adjusted).

I have found that custom wheelchair specialists (mines an RGK) are FAR better at measuring and fitting chairs and ensuring they are set up correctly for you.

With hypermobility such as EDS, you are damned if you do, damned if you don't really..

Don't use a chair, damage your over stretched muscles and lax tendons/ligaments because you move incorrectly, and fall..

Do use a chair, bugger your shoulders and back using them in ways they were not designed to move.

For a kid however I think on balance, using a chair that will likely be mostly pushed by an adult, is going to preserve joints longer than not doing so.

I know a few kids who use a wheel chair for hypermobility and hypotonia I had assumed they got it through the wheel chair service ?These children one in thinking of in particular do have other complex needs including learning disabilities though.

I saw wheelchairs for sale at Costco and was a bit stunned tbh. The threshold must be far too high if Costco is selling wheelchairs for general public use in an aisle near normal bread and milk staples.

My friend has hypermobility and has a big exercise programme from her consultant because she needed to safely build and maintain muscle to prevent pain and resulting exhaustion. There will be huge variation, but depending on how badly he has it there could be other things he needs like exercise programmes, just sticking him in a wheelchair for longer walks doesn't sound enough. His mother probably wants him to save his energy for being at school as pain can get worse through the day, but it's so important as others have said to get a doctor involved to ensure this is the right treatment for him and that he's getting any other support he needs. Could you try looking up support group contacts for her who might be able to help her with strategies for getting a professional involved with his care?

Why is a wheelchair any different to a SN buggy?

When ds was 5 his OT acknowledged he needed something to help but wouldn’t qualify for the tight nhs criteria so we self funded and then at 7 a charity funded a more suitable chair.

At 9 thankfully wheelchair services accepted us and he now has a wheelchair. But otherwise I would have looked down self funding routes

You acknowledge that the system doesn’t meet his needs so what else should she do?

I have EDS-hypermobility type. Diagnosis was very easy. There's a clear checklist/physical test - hands flat on the floor without bending knees; thumb bending to touch the wrist; knee and elbow joints hyper-extending, etc. All very visible when you know what to look for.

I'm so incredibly fatigued that I don't want to do anything. Everything's painful. I know some adults who use mobility aids sometimes, usually because they dislocate easily and frequently need surgery. However, a wheelchair would NOT be recommended ordinarily. The advice is very much to stay as mobile as possible while using pacing to manage fatigue. Deconditioning is absolutely to be avoided and can lead to a worsening of the condition and increased disability. Presumably this child will be sitting for several hours once he arrives at school, therefore a 20 minute walk would be appropriate?

This is taking for granted that there aren't any other special considerations like autism/learning difficulties. Many people successfully use a buggy to stave off overwhelm for their autistic children.