Need opinions on age to get first wheelchair

[Makennasmom]

Makenna is L4-L5 she is almost 19 months old and can't bare weight on her legs at all. She seems not to have any feeling in her legs or feet. (or else she is extremely tough)lol The PT talked about braces HKAFO's with walker, but said at this point it won't help her learn to walk because she doesn't move her hips or legs right now. (she has a stander and that is all the braces would help her do right now) She did say that we could fit her for a wheelchair and then we can ask the Ortho about braces at her next clinic visit. I just love her PT and value her opinion. I guess I just want to know what age other kids get their first wheelchair? I know that she would love to be able to keep up with everyone, she gets tired so fast doing the army crawl. Any advise is greatly appreciated.

[LisaJoy]

Does she have a mobile stander? See leigh828's blog for pictures; her son's about the same age as Makenna.

[Summer25]

I have seen kids as young as 1 or 2 get a wheelchair. Lisa, made a good point. A mobile stander might be a good idea. I would talk to your ortho or neurosurgeon first. They might be able to give you some more insight on what to do and what they think she might be able to do. I have also seen the bad points of getting a wheelchair young. Someone that I know got one younger then I was and she was able to walk some. As soon as they put her in the chair, that was it. She lost all ability to walk. So, talk to the doctors first before deciding. I was a lot older at the age of 5, but that was only because my parents used a stroller or just carried me. My mom fought it for as long as she could because back then as she would say "All they came in were red, blue, and black." I eventually had one painted pink at a car body shop...lol.

[leigh828]

This is such a tough question...we are in the same situation. Greyson isn't bearing much weight either. He is 18 months. He does have a mobile stander which has been great. It gives him the independent mobility that an 18 month old needs, yet in an upright position. I think that we will be waiting a bit before thinking about his wheelchair. He isn't too old to be in a stroller and he is happy and developing in other areas well. Good luck with your decision...I know how tough it can be!!

[Kari]

We got Zach's mobile stander at 18 months, and his wheel chair at 2 1/2. The stander is mostly to help him bear weight. The wheel chair is so that he can get around when we're out and about. At home, he crawls. He's very efficent crawling, in the stander, and in his chair. He still doesn't bear weight at all without support, but we work on it. When he's in the neighborhood playing with all the kids, he crawls quickly and can keep up with them. We use the chair most often when we're at museums, the zoo, the mall, etc.

[dahliafaolan]

Well keep in mind that when I was a baby, there were no such things as mobile standers. Or if there were, they were way too expensive for the general public. That being said, I got my first wheelchair at 15 months and 12 months when I got my first parapodium. Without the bracing, I couldn't bear weight at all. The muscles that control the knees just didn't work. To be honest, I think the bracing was useless. I was stuck in RGO's from the age of 2 to the age of 8, but my wheelchair was still my main method of mobility.

While I agree that you shouldn't limit a child's abilities, a wheelchair shouldn't be seen as the big bad. I believe in independence for a child, whatever form that might take.

[smoop]

We were loaned a mobile stander when my daughter was one. When she was 19 months we had her evaluated & ordered her first wheelchair. My daughter functions at L4ish and was walking with a walker by age 2 (just a couple of months after her wheelchair arrived). Looking back, I think that we should have just waited a little longer to get a chair as she hardly used it. We could have still used a stroller for a while more. It cost our insurance company a lot of money and pretty much collected dust.

[jellolegs23]

I have Myelomeningocele at the L4-L5 level and I didn't start to learn how to walk until I was about 4 or 5 years old. I was having a lot of orthopedic surgeries at the time and a lot of PT. I received my first chair when I was 5 years old, previous to that my mom just put me in a stroller and used that until I was too big to fit into it. I had no problem with my mom putting me in a stroller until I was that age as I wasn't going anywhere without my mom at that young of an age anyway.

In my opinion, 19 months is a bit young to be assessing whether someone will have the ability to walk or not. As far as I know of, there is a window of opportunity for the person to learn how to walk up to the age of 5 years old if the person hasn't learned how to walk by that time then the chances of learning how to walk are slim. But as we all know, every person is different even with the same disability at the same level.

I hope things work out well! :happy065:

[Dodger67]

My lesion is at L2/3 and I walked for a number of years before I got a wheelchair. L4/5 should be able to walk, maybe with AFO's or at most KAFOs.
19 months is far too early to give up on walking.

[Kari]

My lesion is at L2/3 and I walked for a number of years before I got a wheelchair. L4/5 should be able to walk, maybe with AFO's or at most KAFOs.
19 months is far too early to give up on walking.

Make no mistake.... Getting a stander at 18 months and a wheelchair at 2 1/2 is not giving up on walking. Most of our friends who are walkers do have a wheelchair for long distances so they can move quickly and not get worn out.

[jellolegs23]

I can see both Dodger's and Kari's point of view. You don't want to say a person won't be able to walk too early in life as the person could maybe just be a late developer. It is very difficult to give a specific time frame of how long a person with a disability will take to learn a skill.

As for what Kari was saying, yes, a wheelchair can be a wonderful tool for getting around in and a person shouldn't be ashamed to use it if it is necessary. The difference is that when a person makes a choice to use the wheelchair to get around in is usually made AFTER the person has learned how to walk and finds the chair makes it easier or has such a high lesion that walking just wouldn't be a possibility. What Dodger is saying is that for the L4-L5 level walking usually is a skill that a person learns. I am an L4-L5 level and I walk but I do use a chair for distances but I still learned how to walk before I got the wheelchair.

McKennasmom, may I ask has McKenna been assessed by a specialist to figure out why she isn't moving her hips by now?

[jellolegs23]

In other words 19 months is too early to tell what will or will not happen, you might have some indications but no one knows for certain.

[Dodger67]

Giving a child who should be able to learn to walk a wheelchair before he/she has in fact learnt to walk is effectively telling the kid not to bother.
There's a huge difference between 19 and 30 months - quite often more than enough time to learn to walk.
The child needs the correct equipment first. Get a proper evaluation of what kind of bracing and other equipment is needed and provide it as soon as the child starts showing an interest in standing.
Even with my higher lesion I walked exclusively for about 4-5 years (between 2 and 6-7yo) before I got my first wheelchair.

[Kari]

Giving a child who should be able to learn to walk a wheelchair before he/she has in fact learnt to walk is effectively telling the kid not to bother.


To each their own, but I completely disagree with this statement. In order for my three year old to be as independent as possible, he has to have his wheelchair. When he is in a classroom, or on a playground, he needs to be able to move with his friends. He is very motivated to walk, and tries so hard!!!

[Dodger67]

I can only go by my own experience (a sample of one so make of it what you will) I was not walking at 18 months but by 24 months I was walking quite competently.

Individual variation naturally means that not all follow the same pattern or at the same pace.

I really believe an integrated evaluation (neuro, ortho and physio) is needed to figure out a "learning to walk" strategy for every child.
The necessary bracing must be provided, without it no progress can happen.

[Kari]

I really believe an integrated evaluation (neuro, ortho and physio) is needed to figure out a "learning to walk" strategy for every child.
The necessary bracing must be provided, without it no progress can happen.

Very true!!!

[jellolegs23]

Kari I am glad your son has an option to use the wheelchair for distances and it makes it so much easier for him. But in Mckenna's case it is different from your son's because your son has the option to walk when he wishes and also has the option to use the chair when he wishes. But if Mckenna doesn't exercise her ability to walk now she won't develop the ability to choose if she wants to walk or use her chair, the decision would then be made for her and it would be to use the chair 100 percent of the time. We just want Mckenna to have the option to choose which mode of transportation she wants just as your son had the choice to walk or use the chair. Which option she chooses is not important the important thing is that she have the option to choose instead of only having one choice.

[Kari]

Kari I am glad your son has an option to use the wheelchair for distances and it makes it so much easier for him. But in Mckenna's case it is different from your son's because your son has the option to walk when he wishes and also has the option to use the chair when he wishes.

He doesn't walk... YET. I actually just posted a video of him in the Children's forum. It was a PT session last week and he is using a walker with the therapist supporting his hips. Those are his first steps.

[Makennasmom]

Thanks so much to everyone. You all give very good points to consider. We do have the mobile stander (it is great!!!) so we have decided just to wait on the wheelchair. We are going to ask the ortho what he thinks about braces. I am starting to wonder if she is L3-L4 instead of L4-L5. I don't remember if anyone ever said after she was born, and I haven't found it on any paperwork from the hospital.
THANKS AGAIN!!! Everyone here is so great!! I am so glad that when we are faced with something that we just don't know what to do, we can just ask here and so many wonderful expierenced people give examples of how they handled the same thing. None of our friends have ever had to make equipment decisions for their children, so they have no Idea what to say.

[Niyahsmom]

My daughter is 18 months with SB L3 and has clubbed feet which she is having surgery to correct in October, so she isn't able to stand at all at this time, and gets really frustrated about her limited mobility our physical therapist suggested a wheel chair for her until she can become more mobile on her own. Her SB clinic is through Shriners and they said that usually around 2 a little before is a good time. In the meantime we got her a scooter board that has a strap on it. She lays on it on her belly and the strap comes across to buckle her in and she can push herself along much faster than her usual army crawling.

[mamah]

My son Joshua will be two next month and we just received his wheelchair yesterday. I've been told he is around L2. He can only move his left leg at the hip and can't bear weight without his HKAFOs. In his case I believe a wheelchair is necessary for his level of movement.

[LillyPie]

Lilly is 5y/o (6 y/o in about 20 days!!) and got her first chair this year and it has come in handy. For us, there really was no reason for a wheelchair until now. I always used a stroller or carried her, obviously now she is too heavy to carry and too big for a stroller. Lilly does use her chair daily while at school, for trips to the cafeteria and P.E. If I think back.. I am glad that we didnt get the chair earlier because she really didnt need it then, a stroller got the job done. One thing I notice now that we have the chair is that she just gets right in it once we get it out of the car, when in the past she walked until she couldnt walk anymore then my husband or I would carry her. I dont want her to lose any mobility by becoming dependant just because the chair is easier.. easier can sometimes be better but can also make things worse because "if you dont use it you lose it" I have accepted the fact that she will probably use her chair or some type of crutches as she gains more weight and gets taller, gravity will take a toll on her body. Now that she is smaller she will have an easier time getting around compared to an adolecent child, why would I want to make things so easy that she never gains the abilities at all?? Lilly didnt walk by herself without a walker until she was about 2 1/2 to 3 years old and even then it was only 5-6 steps at a time at the most... She is so much stronger than she used to be, but once she started taking steps she grew stronger and stronger. I say to give the kiddos a chance to do what they can, and use other options for what they absolutely cant. Children will surprise us with determintation and strength and we just got to give them the chance to show us :)