Vents and wheelchairs and batteries (Oh my!)

[alizesmom]

While Ciara doesn't use a vent, she has her BIPAP on or near her 24/7. She's not yet mobile and I need advice on how to move her about when we are out. I currently have her in a double stroller but she's outgrowing the seat. What I need are suggestions for something that will move her (she doesn't need much support though it would be nice to have a 5 pt harness and be able to lie her down) and more importantly hold BIPAP, battery, O2 tank, oximeter and suction. HELP! Karen

 

[LauraVV]

What about a Convaid Cruiser? It's a push chair that folds like an umbrella stroller. Ours has the extra sturdy fabric added, is transport ready, and has a net underneath that can carry oxygen, nebulizers, etc. We love it.

Would a regular wheel chair or an electric chair be appropriate?

 

[dclfun]

I would probably talk to her PT and see if they have suggestions. She might be more comfortable in a "low-tech", easily maneuverable w/c that has mounts for her equipment. My vent is on a mount, my feeding pump is on a mount, and my suction equipment is on a tray so the bag can be attached securely. The issue becomes safety not only of the person but of the equipment and stability that the equipment needs to function properly. Rather than purchasing a stroller out of pocket, if a chair is prescribed then insurance should cover the costs, plus it's nice to have certain comfort features such as tilt/recline and the 5 point harness you mentioned, plus a head support, etc. Those items really aren't luxuries when you consider someone who stays in a chair and needs to be repositioned, esp. if they can't reposition themselves due to their disability and have a potential for skin problems, contractures, etc..---Kathy

 

[SueM in MN]

I agree with dclfun.
The PT can help with what is available and can be modified to your child's needs. Some special need strollers/wheelchairs have a vent tray as an option - the PT would be able to check that out for you. If the one that meets her needs best doesn't have that option, the PT should have access to places that could modify it to add something that will work.

 

[DannysMom]

I agree with dclfun.
The PT can help with what is available and can be modified to your child's needs. Some special need strollers/wheelchairs have a vent tray as an option - the PT would be able to check that out for you. If the one that meets her needs best doesn't have that option, the PT should have access to places that could modify it to add something that will work.

I agree, you should be working to get the right chair prescribed and covered by insurance. Maybe check with your local children's hospital to see if they have a seating and positioning dept, I know CHOP does, but that would be clear across the state for you, right?

It sounds like you have some specialized needs, you really need folks that will be able to identify the correct specialized equipment for her & will help you get it paid for with insurance, as specialized equipment is never cheap.

 

[belle&beast]

I agree to talk with the PT. I am not sure how old Ciara is, but I know in our preschool we run into trouble with transportation on the school bus when kids are using strollers. The children are required to be in wheelchairs or able to transfer easily to booster seats to be secured on the bus. School transportation may or may not be an issue for you, but it is another thing to think about. Also, wheelchairs are definitely easier and faster for staff in school in case of an emergency or fire/storm drill.

 

[SueM in MN]

I agree to talk with the PT. I am not sure how old Ciara is, but I know in our preschool we run into trouble with transportation on the school bus when kids are using strollers. The children are required to be in wheelchairs or able to transfer easily to booster seats to be secured on the bus. School transportation may or may not be an issue for you, but it is another thing to think about. Also, wheelchairs are definitely easier and faster for staff in school in case of an emergency or fire/storm drill.

If you plan to use the special needs stroller for transportation, you need to make sure that it is one designed to for bus transport. Some are not and those are not safe for a child to sit in during bus transport.
There are some that are designed for transport. Those have special areas made to have bus tiedowns attached and the frame is strengthened for transport.

 

[alizesmom]

Thanks for giving me more concrete things to consider. I actually have an order for a wheelchair, just getting imformation on what type since I can't get a straight answer from the local DME. Karen

 

[belle&beast]

If you plan to use the special needs stroller for transportation, you need to make sure that it is one designed to for bus transport. Some are not and those are not safe for a child to sit in during bus transport.
There are some that are designed for transport. Those have special areas made to have bus tiedowns attached and the frame is strengthened for transport.

Thanks for this info. It seems many of the kids I see in preschool have goals of being mobile and their parents prefer strollers to wheelchairs when they are very young. We have many instances where the expensive strollers are not able to be used on the school bus, and parents have been upset that they have to find transportation or work on getting a wheelchair.

 

[SueM in MN]

Thanks for this info. It seems many of the kids I see in preschool have goals of being mobile and their parents prefer strollers to wheelchairs when they are very young.

When my DD was very little and had outgrown her 'regular' stroller at not quite 3 years old, a special needs stroller was what was recommended to us. (Strollers were smaller in those days and they just did not have strollers to hold kids who were older than 3).
Anyway, she did have goals of walking, so the OT, PT and everyone else was saying a special needs stroller was the way to go. We thought about it and decided on a wheelchair instead.
Cost was not all that much different. And, she was not expected to have enough walking skill to be able to walk more than short distances (at least in the beginning).
The biggest difference to us was that in a stroller, she would be dependent on someone pushing her because the stroller would be impossible for her to move by herself.
In a wheelchair, she could beging to learn how to move herself. Even though she was a tiny little girl in a very large wheelchair, she did learn to move it. She was not able to go long distances, but at least she could go.

There are some kids that a special needs stroller is a better choice for (example would be someone who is impulsive and has no safety judgement) but a lot of parents are probably not even given the choice and are just presented with the stroller as the only option. I have a feeling some of that may have to do with the biases of the person making the recommendation (i.e, "if I suggest a wheelchair, it tells the parents I don't expect the child to walk.") or the experience of the person making the recommendation (that is what they usually recommend).