Help with wheelchair

[inheritancetrack]

DS13 constantly slips down his wheelchair at school despite lapbelt and harness. has anyone tried a groin harness and do they have any recommendations?

You probably already have, but have you tried various different wedges and cushions?

@Extremelybumpy

You probably already have, but have you tried various different wedges and cushions?

He has spinx (spelling?) cushions imported from New Zealand and expensive, especially for his weird pelvic tilt and the scoliosis, so I think the cushion/wedges has been looked at. We are going to try a non slip pad and his chair and a different sling, as the one school uses is in there all the time and is a silky fabric so of course he will slip. He is waiting on scoliosis surgery which will straighten him and his pelvis up so hopefully he sits better.

DS1 has just been added to the extremely long waiting list for scoliosis surgery.

can't help with seating as dd has a CAPS seat.
but we found these the best slings (see picture) they have a lap belt and are not made of slippery material.

@Extremelybumpy

DS1 has just been added to the extremely long waiting list for scoliosis surgery.

Its a nightmare isn't it. Covid has really put back surgeries.

@Samcro I will look into that. We Have a Glove hug sling which is amazing and doesn't go under his bottom so we could have a non slip pad under him too, but it can't stay on him all the time as it has rigid stays round the back so that won't be comfortable with scoliosis. School are not happy with lifting him back every 10 minutes (weighs nearly 40kg) so the whole situation seems difficult :-(

We are considering looking at private options, partly because it is having a knock on effect on another condition, while feeling privileged and guilty we can afford that when so many couldn’t begin to even contemplate it.

@Extremelybumpy

We are considering looking at private options, partly because it is having a knock on effect on another condition, while feeling privileged and guilty we can afford that when so many couldn’t begin to even contemplate it.

We self funded a child's wheelchair a few years back and it was the best wheelchair ever. Doesn't meet his needs now and outgrown, but look at the Veldink site. All we were being offered was a chair with wheels he couldn't push, and a big heavy chair. We got the Kiddo tilt in the end and it was fabulous. It costs over £7K though, but had everything for a complex child like dynamic back, tilt in space, and he even managed to push with one hand. Wheelchair services will give you a voucher for the amount they would have paid for a chair they regard as suitable, and then you need to add the rest. Charities are great but can take forever so we just dug deep and found the money.

@Extremelybumpy We also funded a Second Skin Scoliosis suit while waiting on surgery as a rigid brace would have been impossible for a dystonic child.

DS has an Action 3 wheelchair, he hates it, refuses to use it and it doesn’t meet his needs. He much preferred his SN buggy (we had an Ormesa bug and a special tomato jogger) but outgrew them so we bought an Axiom phoenix pushchair.

DS1 has a Lycra bodysuit (which he also hates, can you sense a theme here?) via an IFR.

Despite not being paralyzed, I have a seatbelt on my custom manual wheelchair for Ambulette service nyc. I "earned" it due to a bad habit of failing to correctly calculate my center of gravity when reaching for objects on the ground and failing to break my fall gracefully with my face. Even with the seatbelt, I occasionally slip and have to correct my position, but it prevents that problem. Due to my gravity issues, I learned that one drawback of wheelchairs is that if you flip forward while seatbelted in, it can be challenging to get right into the situation and not panic.

It sounds as if a groin harness could cause problems with pressure damage if he is slipping that much and that often.

does his chair have a tilt in space function? Using that so that gravity keeps his pelvis at the back of the seat might be a better solution that causes less problems.