wheelchair?

[Ziggy]

Micah doesn't have the stamina to walk with his walker for long distances. I can't always carry him, especially when I have to carry him and the walker. But I also want to let him have as much independence as possible. Is he too young (turned 2 in March) to consider a wheelchair that he can push on his own? Is he going to give up on walking when he figures out how easy it is to get around in a chair? I know he's fine in a stroller for a while, but it's not giving him the independence he needs, and it's hard to push it and carry the walker (or balance it on the stroller handles). And what do they cost anyway? I was hoping to wait until he was off the Medicaid waiver waitlist, but that's taking forever. So we're likely to have to pay out of pocket for it if we want to get it through a decent DME company.

[mcco5543]

He may give up walking when if he decides he can get around faster, easier and be WAY more independent...isn't that your ultimate goal though? do have your child be as independent as possible?

[LisaJoy]

Ziggy, I've seen children as young as 18 months using wheelchairs.

Check with your local SB Association or United Cerebral Palsy to see if they have any loaners.

[cadon's mum]

I'm also having this dilemma, Cadon can walk independantly for about 30 - 40 ft before his right leg starts to drag and he asks to be carried, physio have just given him a walker but he hates it, and i end up carrying him and the walker and trying to push the stroller at the same time ( he hates his stroller too!) Physio said that they will try a cane or crutches next if he doesn't get on with the walker, but i just can't see how this will help him when his legs get tired. I really think that a chair is the only option we have at the moment, but physio thinks that he may get reliant on the chair and give up walking completely. Cadon is fiercely independant so i can't see that happening any time soon and there is no way that i'm going to stop pushing him to try and walk so i can't see her problem, he has such determination to walk and try to keep up with his siblings but if he over does it, he can barely stand for two days afterwards.

[Dodger67]

If the problem is consistently his right leg does he have adequare bracing for it?

[cadon's mum]

We are waiting for an Ortho appointment for an AFO for his right leg, he has significant weakness in it. His gait has changed quite dramatically over the last couple of months it used to be only his ankle that would roll, now he walks with his right knee locked and then when he's tired he walks from his hip ( that's the only way i can explain it!) his whole right leg locks.

[ainemc]

I know how you feel! My back is broke from carrying Caitlin and her walker, she much prefers to walk holding my hands, but then I want to bring the walker out with us too to try to encourage her to use that. She walks in a normal pattern, but I notice that when she's tired she doesn't, and her legs tire easily. I'm also getting a bit concerned as her right foot is starting to turn in when she walks :(

Hope you guys find solutions soon, then share them with me lol

[Ziggy]

Yeah, my back is killing me too, making me not want to do anything but sit all day.

I'm resistant to the idea of a wheelchair because until his last round of major surgeries this winter, he could (and frequently did!) walk 1/4 mile from the parking garage to PT, did his PT and then walked back.

[LisaJoy]

physio thinks that he may get reliant on the chair and give up walking completely. Cadon is fiercely independant so i can't see that happening any time soon and there is no way that i'm going to stop pushing him to try and walk so i can't see her problem, he has such determination to walk and try to keep up with his siblings but if he over does it, he can barely stand for two days afterwards.

Wheelchairs ENHANCE independence -- they do not limit it.

But do try the AFO -- I wear an AFO on my right leg -- I get fatigued very quickly without it, but can go further and longer with it (and with a crutch -- two crutches for long distance).

[Ziggy]

He may give up walking when if he decides he can get around faster, easier and be WAY more independent...isn't that your ultimate goal though? do have your child be as independent as possible?

Yes that is my goal but the simple truth is that there are places where walking would definitely be to his advantage. And our house is over 100 years old with two sets of stairs inside and stairs at both the front and back doors. We could put a ramp on the back stairs but it's not practical on the front ones. It is not at all wheelchair friendly.

[jveprek]

I struggled w/ the whole wheelchair thing too. Madi has a prety high level (l2) and uses HKFOs. She really can't go very far w/ them before she's tired. We practice a lot at home, but walking to the grocery store is just too much. So..... this is what we do. We got her a wheelchair. She was in it at about 22 months. She is crazy good in it and can do circles, go fast, stop on a dime, etc... But, we only use it when we are out. At home, we work on walking, she is carried, or she crawls. Oh, or sometimes we use a rifton dynamic stander at home or when we are out so that at least she is weight-bearing a bit. Anyhow, that might all change as she gets older, but when we first got her wheelchair she didn't want to try with HKFOs any more, because the chair was easier. Doing it this way is a good compromise for us. The only problem is that she is two and likes to scream "wheeeee" while she's using her chair ;)

[Summer25]

The child will only become lazy if the parent allows it. If the child keeps walking, then great. I have seen both happen. A friend of mine was put in a wheelchair at 5 years old. She was a L5 and could walk with no assistance at all. Her mom allowed to her do what she wanted and she lost that function. As for how much it costs, depends on your child and what he needs. They start at usually $2,500 but then go up from there with all of the different add ons and cushions. I would get him evaled by a wheelchair company and go from there. That way you know what it would cost if you did need one.

[Justy Me]

For someone such as myself, wheelchairs are 200 percent more freeing than walking, but I would have to wear full length braces. They're time consuming and uncomfortable and not at all practical. But for others who need minimal assistance I don't see laziness being an issue unless, like Summer said, it's encouraged or allowed. As long as it's not something that's forced one way or the other both can be an equal " presence", for lack of a better word, in your child's life.

[Ziggy]

He uses AFOs. We tried a KAFO on the right (his weaker side thanks to complications post-op from syrinx decompression) and he HATED it. He wouldn't move if it was on. So we went back to AFOs. We're looking at maybe getting GRAFOs but the physiatrist says she doesn't think he'll do any better in them. But he's only walking on his toes on the right side and he refuses to bear weight on his right leg when he's standing still. He just rests the toes down on the ground and keeps his knee flexed.

[Ziggy]

Oh and he's about an L4.

[Makennasmom]

We are struggling with these same issues. Makenna is 2 and 1/2 now, she is L-4, but can't stand at all. Any pressure on her legs and they just fold. She has just started to crawl on her knees (she slides them both at the same time, not like a normal crawl, but extremely cute) I really feel bad for her when we go places and she can't go like the other little kids. It feels like she gets left behind.
Let us know what you decide and how it works out.

[mcco5543]

After I switched to a chair I "lost" the ability to use full braces and cructhes because of tendon contractures. But I'm still more independent then I'd ever be. Had my parents made me "walk" for the very very small benefit it would have given me (and it wasn't much since my legs are fully paralyzed from the waist down) they would have been doing me a great dis service and held me back. I'm going to respectfully suggest that if your child chooses to "give up"
"walking" it's becuase they instinctively know what's going to make them their best most independent selves. That really is for them to decide.

[jveprek]

After I switched to a chair I "lost" the ability to use full braces and cructhes because of tendon contractures. But I'm still more independent then I'd ever be. Had my parents made me "walk" for the very very small benefit it would have given me (and it wasn't much since my legs are fully paralyzed from the waist down) they would have been doing me a great dis service and held me back. I'm going to respectfully suggest that if your child chooses to "give up"
"walking" it's becuase they instinctively know what's going to make them their best most independent selves. That really is for them to decide.

I agree with what you are saying, my only thing is that with really young kiddos (ours are in their 2's), they cannot comprehend their choices right now. So, if we don't try and help them walk, and they want to later, it will be much harder for them. But, if we do a combo approach of walking and wheeling, it keeps their options open for when they are able of making an informed choices. That's just my two cents.

[Ziggy]

I agree with what you are saying, my only thing is that with really young kiddos (ours are in their 2's), they cannot comprehend their choices right now. So, if we don't try and help them walk, and they want to later, it will be much harder for them. But, if we do a combo approach of walking and wheeling, it keeps their options open for when they are able of making an informed choices. That's just my two cents.

This! And he's got control of everything down to plantar flexion (can't push his feet down, but he can pull them up off the floor).

[orientallefty]

Cost of wheelchairs are all over the place. Rudimentery ones (like the ones they have at airports and the ones they loan to you at the malls) cost under $100. Good, customs ones can cost many thousands.

[Kent T]

My little nearly 4 year old Viking toddler, Bjorn walks half the time with his Allard Kiddie Gait AFO braces and wheels the other half. Reasonable compromise.

[Ziggy]

I did it. I asked our PT and got a referral to seating clinic. We're hoping to get into the one at myelo clinic Friday (we're going anyway, might as well kill 2 birds with 1 stone!) I assume it's going to be 6-8 weeks again, similar to his walker... I wish we had the medicaid waiver so we could use the better seating provider, but oh well. We'll go with the one our insurance okays and pay less.

[Ziggy]

and now my husband is being dense. He thinks that if we get a chair, Micah's going to give up on walking.

[jveprek]

Initially he probably will want to use it like crazy cause it's new and exciting. After the first excitement wears off, you can keep it in the car or garage out of site and just keep up with the walking, except for longer trips out :)

[Ziggy]

That's the plan, Jamie. He'll need to learn how to control it, and then it'll be for long trips away from home. It will not be coming into the house at all... it'll stay in the car or the garage.

[Kent T]

I have SB myself, walk part time. Little son is similar in needs. My stepfather never accepted my SB or hip/gait issues nor me. My attitude is use the best tool for my job as active broadcaster and parent. My sons both have SB as does my wife. Older son is a full time wheeler as is wife. My little one is part time (right now in his chair heavily due to a cracked shin (casted too). And hope when it's healed back to some walking at his speed. We're trying to keep options open until he gets older (and if it increases pain or hip issues or makes him too tired to interact) he gets to wheel as he needs. His comfort and function are important and his quality of life. We're equipped for which way he needs.