Another Equipment Question

Ainsley's Mom · #1 03-17-2009, 09:17 PM

When you have a child with special needs how do you know what equipment to buy? Ainsley is tall, 37" give or take. And our stroller isn't quite supportive enough but we've done okay with it. But now when she falls asleep she's too tall to recline. She's getting too big to do diaper changes on the flip down things in public bathrooms. We're working on getting her a gait trainer but she probably won't ever be able to do long distances. (Like what if I want to take her and the other kids to the zoo?) So do I look at stroller style push chairs or a real wheel chair so she can be in control?

Is it normal to get a gait trainer and a wheel chair? I remember some of you saying that it can be hard to get a chair when the child is walking so I'm hoping to avoid that by thinking ahead and starting the process now.

Don't you think it's unlikely that once she truly outgrows a stroller in a year she won't need anything at all?

Any advice welcome. Thanks.

kirafaesmom · #2 03-17-2009, 09:39 PM

We started with a pediatric stroller and then had to move to a wheelchair. Our experience with the strollers was NOT good. They are lighter weight, but typically do not have the growth factor/adjustability built in like a good peds wheelchair does. If you do go with a wheelchair, I would NOT suggest the highly customized/custom fit seating systems. They are GREAT for a couple of weeks and then as soon as there's any change in weight/height/scoliosis they don't fit so well. Also, I don't remember if you have private insurance in addition to Medicaid, but we only have Medicaid. They will only pay for ONE chair/stroller every 5 years unless it's medically proven you need one sooner, and if you do, it's a FIGHT. That's been our experience anyway.

Louise D · #3 03-17-2009, 11:30 PM

Do you have PT? What do they think? Angelo has a Quickey wheelchair. He is a paraplegic and will never walk. He has had the same wheelchair frame since he was 2 1/2, He is now 7. They have changed wheels. seat, front fork, ect. as he has grown. He has another 2" to grow before we start looking into another chair. Angelo pushes his chair about 85% of the time.

Louise

alizesmom · #4 03-18-2009, 08:34 AM

Ciara has a gait trainer/walker and a wheelchair. They are different issues especially if your child will not have the endurance for long walks. Her wheelchair is a kid kart because we liked the vent tray we were able to get underneath it. I'm drawing a blank on the brand of gait trainer she has but she is really getting the hang of it. Alize does have the fitted seating with his quickie but it can be adjusted for growth and he needs the support. Karen

Alex's mom · #5 03-18-2009, 03:34 PM

Our EI pt worked with the company in our area that supplies med equip and we tried out various gait trainers, standers and they fitted her for a wheelchair as well.

I'm guessing that if someone needs a gait trainer they are not able to walk on their own so getting a wheelchair/stroller shouldn't be an issue. If Ainsley will be attending school when she's 3, she would need some type of approved stroller or wheelchair if she were using a bus for transportation.

WeAdoptKids · #6 03-18-2009, 11:43 PM

We have always been told that by the age of two they need to be in a seating system if they are not walking, or it does not look like they will walk. We have gait trainers and wheelchairs for each child.

We also have standers for both boys. Mordachi has the Cadillac of all standers. I will have to look the name of it up if wanted but it goes from a sitting position into a standing position with a tray. He does it all himself with a level lift. It is so neat. He loves it. Mordachi has a electric chair and Joseph a manual chair. Rifton makes their gait trainers.

Hope that helps some. Oh yes, our PT did all the ordering and the doctor signed off on it all.

Roberta

cbissell · #7 03-19-2009, 04:14 AM

As others have said, it's typically the PT who can advise you on equipment needs. They will also have to write a letter of medical necessity. If she does not need a full wheelchair, then a special needs stroller is a good option. For example, the Convaid brand is fairly popular, but there are lots of others.

As for diaper changes...this is a problem for all of us

It is pretty much impossible to diaper my 15 year old boys in a public place, so if we are going to be out for a long time I use a baby diaper as a liner (because they are much more absorbent than adult diapers), then I double diaper over that. I've also changed Eric in the back of the van. Depending on where you are, there might be other options. But it is a problem for sure.

cbissell · #8 03-19-2009, 04:20 AM

Quote:

Originally Posted by WeAdoptKids

We have always been told that by the age of two they need to be in a seating system if they are not walking, or it does not look like they will walk.

I would agree with this. A kid-kart or similar chair might also be the answer at this time, if she is not working and will likely not walk anytime soon.

MotherWhimsey · #9 03-19-2009, 09:46 AM

We have the Kimba by Otto Bock. It's a stroller type chair. The only down side to it that we've found is that he's already starting to get too tall for it. His legs aren't long enough for the foot plate (he's got some super stumpy legs) but his torso is so long that his head is almost too tall for the head rest. I'd totally go straight to a push chair instead of a stroller as old as she is.

norac433 · #10 03-19-2009, 02:43 PM

I need to buy a stroller for "Z". She is able to walk, but if I go anywhere (like the mall) she needs to ride. Also, there is the suctioning and her trach bag that weighs a ton. I have been looking online for a stroller that will accomodate a larger child, but they are so expensive. "Z" weighs 30 pounds and I wonder with her in the stoller and all the equiptment a regular stroller will not be able to handle her for long. Also, I want her to feel comfortable.
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