When to get a wheelchair?

Iridescent - posted on 07/03/2010 ( 127 moms have responded )

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My daughter has a huge list of health problems. The ones I'm considering for this post include hypotonia, difficulty walking (any distances, but increasingly difficult the further it is, max for her is about 10 minutes walking), and chronic fatigue. She's 3 years old now and 34 pounds, and we've been using a stroller up to this point regularly. Her stroller is worn out though and our wagon was broken by a contractor working on the house, so we're carrying her a lot. She has intoeing (pigeon toed) as well as toe-walking due to short heel cords, which are being treated. She was casted for a full month, both legs/feet, and now she's getting splints. The doctor told us she'd need them for 6 months before a recheck, but in all likelihood she'll need them several years, until she stops growing. She's also getting to where she can't fit in the seats of the shopping carts, either.

She's not paralysed, she can walk. But we can't do a lot of the things we need to without carrying her now the bulk of the time. At what point do people wait before checking into getting a wheelchair for a child like this? There really isn't hope that she's going to improve, so that's not the issue at all. Do we just need to accept it and request it and move on? I feel like we need it, but also like we're taking away from her by even considering it.

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Heather - posted on 07/04/2010

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http://cgi.ebay.com/2009-Maclaren-Major-...

This is a Maclaren Major- we've had one for our son for about 3 yrs now. Very lightweight, easy to maneuver and very durable. Goes up to 140 lbs and basically folds up like an umbrella stroller. Kind of an in-between from stroller to wheelchair.

Sarah - posted on 07/26/2010

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We used a Mclaren major buggy too for our daughter when she was around 3 or 4yrs, we had that for a few years but living quite rural we tended to rely on the car anyway. Its only been in the last 2yrs that we found we had to get a wheelchair, like your daughter my daughter now aged 11yrs can walk short distances but we are limited in where we can go that doesn't involve a lot of walking so a wheelchair was vital for her enjoyment of life per sa as it meant we could go for days out.
Our daughter had a tethered spinal cord which damaged the growth of her legs/feet leaving them deformed, but she goes to school and walks round ok, she just has a problem walking longer than 10minutes.. You may find once your daughter can make up her own mind she doesn't want to rely on a wheelchair unless its absolutely neccesary, we have a happy medium the chair only comes out when we have to walk around town shopping or days out otherwise she walks as much as she can.

Jodi - posted on 07/19/2010

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My son has problems walking long distances too. He is now 12 and we were able to borrow wheelchairs through the years through an equipment lending group that was recommended by our Children's Hospital. He can walk and only needed the chair when we went somewhere that required a lot of walking, so investing in a chair wasn't a great option for us. We were able to turn his borrowed chair in and get larger ones throughout the years. It's been a blessing. We are now at the point of looking into getting him a full sized adult chair and actually purchasing one to keep. Keep encouraging your daughter to do her best, but you will always know what is best for her. good luck

Renee - posted on 07/15/2010

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AMy
I am a Physical Therapist who works with Special needs indivivduals in the school system---your question is atruly valid one but without an easy answer---I say this because there are so many factors that play a role--things to consider.----future prognosis, type fo family vehicle to acomodate a wheelchair versus a speicialty stroller, her ability to self propel, frequency of community outing, present medical intervention that prevents walkng/makes it difficult. based on what you said in your post---your daughter deffinitely needs some sort of wheeled mobility---not sure what state you live in but in michigan there is something called early-on programming --to meet needs of special needs children who are less than school age---get connected with them--they with the assistance of a School based PT---can help get the needed equipment ordered--they may even have a donor item you can use while waiting for your order. I would definitely act now---because insurances take forever to gie approval especially state/govt insurance. I would be happy to discuss more with you in the future.
God Bless
Renee

Dawna - posted on 07/15/2010

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Amy, does she have the upper body strength to maneuver a chair? On one hand, it would help with her upper body strength, but on the other hand, if she isn't strong enough to push herself, I would think you are better off with the push chair.

Huge (((hugs))) for the emotional battle you have to fight. It's difficult to deal with these issues. My daughter is a T7/T8 paraplegic (complete), and the first time I had to buy diapers after her injury, I sat on the floor and sobbed like a baby right there in the diaper aisle in Walmart. I'm sure people thought I was nuts. Ordering her first wheelchair was traumatic, since I was still in a bit of denial. I felt like I was giving up hope. Sometimes we have to grieve the "what could have been" issues. I am so saddened at the thought that she will never be able to hike the ravine at the local nature trail, or compete in a potato sack race, or dance at her wedding on her own two feet. (though she can dance a mean twist, and her square dancing isn't too bad, LOL!) Stay strong, Amy. You are an amazing woman, and doing everything in your power to make your little girl's life wonderful.

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Jennifer - posted on 11/09/2011

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She'll be able to explore her environment better with a whellchair than in a stroller. Thats whAt i tell myself regarding my almost 3 yr old who uses a walker to walk. And carrying her you will gwt burnt out.

[deleted account]

Ditto Jennifer. We got a Maclaren Techno XT for our son and after 3 years, it's holding up great. He is 4 and weighs 42 lbs, 42 inches tall. It will still fit him for a few more years. The weight limit is about what my 7 year old daughter weighs.

Martha - posted on 07/27/2010

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If you can get one get it and only use it for like the stores and when your walking along distance. encourage her to keep walking I have the same problem. my son has cp and it affect his right side. so I to could not carry him when he sprung his leg and we had to get one check with local pharmarcy if you just want on to put her in. they should help you find the right size for you.

Terri - posted on 07/26/2010

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But you also have to consider that when she starts school if she is going to ride a bus, that the wheelchair will need to be strapped down so it will not move around. And there are wheel chairs that break brown so it can fit in a trunk of a car. and grant it strollers are nice and when i watch my 7 yr old grand daughter at my house i will use a regular stroller if i don't have her wheelchair.

Patricia - posted on 07/25/2010

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In my opinion I would be looking at a stroller for special needs children. They are lighter and far more transportable than a wheelchair. Wheelchairs are heavy and bulky and not all vehicles have the room for them even when folded. Hope that was helpful.
Tricia

Terri - posted on 07/25/2010

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My grand daughter got her wheelchair when she was around 2 1/2 yrs old so she could ride the bus to school when she turned 3 yrs old. She will be 8 in August.

Cindy - posted on 07/25/2010

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Amy,

My daughter just turned 19. She got her first wheelchair when she was almost 2 years. It gave her such independence! She was able to move on her own for the first time. I understand why you're concerned about getting your daughter a chair too soon since your daughter walks (mine didn't/doesn't), but when your daughter gets tired she probably just sits. If she had a chair she could still remain active when she needs a break. Just make sure she gets as much exercise and walking time as she can handle. I'm not a big fan of the stroller type of wheelchairs for kids who can use their arms to move their own chair. Kids need to explore the world. The stroller chairs don't allow kids to move independently. It took me a long time to get to this point, but I no longer feel that walking is the be all and end all. It's getting around independently that's most important. Allow your daughter to explore her options.

Jennifer - posted on 07/22/2010

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my daughter got a wheelchair at age 3 she could not walk but even though your daughter can walk you still have to carry her some and that takes a toll on your body, if i were you i would look into it and maybe get a handicap tag so if your making a short errand she can walk if she feels like it and the chair is in close range if you need it

Teresa - posted on 07/21/2010

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Convaid makes a stroller for children who need one but have outgrown traditional toddler strollers. It folds up like an umbrella stroller and is not as expensive as a wheelchair. Since she can walk and only needs it for distances or bad days, let her walk when she can.

Amanda Cook - posted on 07/20/2010

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Well I completely know how you feel. My daughter just turned 4 and we are going Thurs for a wheelchair fitting and adaptive seating. She has many medical problems too, including hypotonia. There are adaptive strollers, which I'm checking into. Faith has an unknown genetic syndrome so one thing we have to consider is that she needs something she can grow into and use now but incase there is regression still be able to use it. Good luck and I say go see what's out there for her. It is tough on us parents that have to carry our children around. We have to take care of ourselves too so we can take care of our angels! Glad you posted this and it makes people not feel so alone! :)

[deleted account]

Hi Amy,
Just seen your post and the replies, sorry to hear about your daughter. My daughter Sasha is CP we have also been using a maclaren buggy for her. She has been very comfortable in it. Its so easy to take with you, and does not take up alot of space. Ihope that if you decide on one for your daughter that it will be better for you. I agree with one of the ladies, can have the best of both, use it when you need and keep encouraging her to walk. As moms its sometimes hard to make these kinds of decisions, but we know in our hearts we do the best we can. I have joined a support group on facebook for Cp children and met a wonderful therapist who is so passionate about helping parents with children who have disabilities of al kinds maybe look him up on FB his name is Harish Badiger, he has lots of knowledge and is always willing to help. He has been a great support to myself and other moms of physically challenged children. Take care.
Bee

Samantha - posted on 07/19/2010

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Hi, my son was bron with Spina Bifida which means he is paralyzed from the waist down, we use a chair called a Tumble Forms Ready Racer, they are expensive, but work awesome and are low enough he has the ability to crawl in and out of it at his own discretion.

Patsy - posted on 07/18/2010

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mY son is 11 years old & in a wheelchair but he had a special needs pushchair until he was 5. It was called a pixie & you can get them from your local wheelchair service your doctor will recommend you for them to assess. They are jut a little biger than the usual pushchairs & off all the support thats often needed. My friends son is also special needs & can walk but easily tires so they have a little wheelchair for him but again he had the pixie pushchair until he was 5. I hope this helps a little

Leona - posted on 07/17/2010

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My daughter is 5 and in Sept. she will have her wheel chair for a year. She has 1 p36 chromsone deletion. We used a stroller for a long time and like your daughter my daughter Anna just got to big for it. But the main reason we went for the wheel chair is because of her school. In order for her to ride the bus she had to have a wheel chair. You might want to take that into consideration.

Anna's wheelchair has been great with getting her around and we use that for her to eat in since it has a nice tray to go with it. Try not to think of the wheelchair as hampering your daughters development but instead think of it as another tool in order to help her grow.

Best of luck.

Iridescent - posted on 07/17/2010

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That's just exactly it, Jenny! We're on our 5th? with her as well. Went through a Peg Perego, Zooper, Sit n Stand (as someone else has suggested we get instead), Baby Planet, and a Kolcraft Contours. We have honestly tried everything, gone to stores and trialed them, bought anything that seemed appropriate. Spent way too much on strollers! And she is too big for them all now, and we have 1 stroller which is totally shot, and 4 that are too small.

I think part of our problem is that our doctor wasn't really aware of how much Cassie's health does follow the mitochondrial disease trend overall, vs the OTC trend for her diagnosis. The muscle weakness and fatigue and lack of endurance and hypotonia do not go with her diagnosis. Our concerns at each appointment are whether she's grown, is her liver enlarged, how are her liver and kidneys functioning, has she lost more brain function, are the feeds going well, does she need a new diet, and how are her labs - is she in need of a liver transplant yet. Yet there is so much more involved in what's wrong with her! OTC kids, that's the extent. But Cassie also has such major muscle weakness, toe walks due to short heel cords, has in-toeing, hypoglycemia, eczema, constipation, poor veins requiring the port she has, low immunity, ?hearing loss, hypotonia, lack of endurance, huge sleep needs. And all of this is missed by her appointments, which are every 2-3 months.

Jenny - posted on 07/17/2010

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I live in Michigan and The University of Michigan Hospital Wheelchair and Seating Services ordered our Hoggi Bingo. Our Physical Medicine and Rehab doctor wrote us a prescription for it after I told her we were on our 5th regular stroller and none of them were working for us. Clare is now 6 1/2 years old and is he size of a three year old she is 28 lbs and 36 1/2 inches tall.

Adina - posted on 07/17/2010

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OMG.....i checked out all the links.You have so many options,so many choises!!!Here we don;t have any of these products :( If i want a weelchair for Cris,i have to buy a regular one,like there are in the hospitals.I feel like i'm living in the worst country.......we do have special need kids but no help whatsoever.....

Jenny - posted on 07/17/2010

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My daughter also can not walk distances. Last year we got a special needs stroller in stead of a wheelchair. It is school bus ready for if she needs it for field trips. It also grows with her and we have even taken it camping. it folds nicely, has a basket underneath a canopy for the weather and it has many different sitting options. It pushes easier than any regular stroller I have ever tried, I can push it and turn it with one hand. I take it grocery shopping. The name of the stroller is a Hoggi Bingo.

Here is the web site http://www.hoggi.de/en/bingo.html

Our doctor wrote us a prescription for it and her insurance payed for it. We let Clare walk when we are someplace were we are not going to be waking for a long time. We use the stroller when we are going to be doing a lot of walking. We do a lot of hiking and a stroller or wheelchair can not go so I bought a Euro Baby carrier. It is a soft carrier that you can wear on your back and it fits in my diaper bag when I don't need it. That has been nice for when we are places and didn't bring the stroller.

Autumn - posted on 07/17/2010

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Does she have muscular dystrophy ? have you called shiners .. children hospital ... they help alot ...

Jacqueline - posted on 07/17/2010

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You should not feel guilty about using a wheelchair for her. She will be much more comfortable in wheelchair that is made for her size. You may use it for shopping trips and other times when it is difficult for her to walk. She sounds as if she would qualify for SSi and Medicaid,so if you have not received that or checked into it, you should. It is very difficult to care for Special Needs children and this would be one less thing for you to worry about. God bless and prayers for your Daughter.

Adina - posted on 07/17/2010

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I had until now(my daughter is 2 years old and about 24 pounds i think)4 strollers and now i bought the 5th one.This one is much stronger and i think i will use it until she will walk(i hope),because we're hoping that in max 2 years she will.Anyway.I will buy a weelchair as soon as she will get heavier.It's hard to think that she will be in one,even though i know how serious her illness is.But actually i know that i will get use to it.And you should have one.You should think abt the fact that she is heavy,and your back will be in great difficulty.It's like you do a step back,but actually it;s not like that at all.You allready know by now that you need to think practical.You could also buy a nice strong stroller.They are more expensive,but can carry up to 66 pounds or so as far as i know.So if you put your money in one of those,you will use it a long time.
Either way,you know i hope,that she needs a healthy mom,so if you can't carry her,you must do whatever you need to be more comfortable.

Jane - posted on 07/17/2010

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Hi, I have a son with Downs Syndrome, he has walking problems due to hip issues and he is 6, but he is the size of a 4 year old. He has now grown out of his Buggy. I have been looking into Wheel chairs, I really didn't want to do it. Then I came across a Buggy for Special Needs children. McClaren Elite. It is on the internet so maybe you could check it out and see if this will suit your needs. The unfortunate thing is it is £250.00, If money is an issue there are charities that will help you out. Let me know and I will give you details. Best Wishes. Jane

Donna - posted on 07/16/2010

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i av a son whos 10 and he has autism moderate learnin disabiltys ans a severe behavioural prob xx we r still using his major buggy at the moment it has been brilliant xx u need to do wat u think is rite xx not sure wat we r gonna do wen hes too big for it tho xx good luk in wat ever u decide
donna x

DeDe - posted on 07/16/2010

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Dear Amy:

There is no reason why you cannot have a walker and a wheelchair. As a matter of fact they have prone standing wheelchairs in which she can sit when she is tired and stand and wheel around when she is not.

For me, I had to struggle with this same thought. However, I did not want to able my son into not getting stronger. So, we did both the walker and the wheelchair. He used his walker up until he was 12 years old and then he went to a wheelchair. With the lost of his walker, we had other problems arise (when someone is prone to sitting all the time, they begin to lose bone density and that can cause breaks easier.) So, even though my son now uses a wheelchair all the time, we have also gotten him a prone standing wheelchair so he can stand and start to build up his muscles as well as bone density.

Good luck to you and your family.

Stephanie - posted on 07/16/2010

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You need to do what is best for her. If you are really considering a wheelchair you need to do it ASAP. They can take forever to come in and you can get them where they don't even look like wheelchairs. My daughter has the bug seat and it looks like a stroller.

Joell - posted on 07/16/2010

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If you would like something that kind of looks more like a stroller and folds and goes well on the grass too, look at Convaid they have a Scout and other products that are easy to use. We use ours when we go away only or to take long walk around the neighborhood. My son walks in the house and even in stores or doctors offices if it's not to far.
You need to think of yourself and your back...you will be taking care of your daughter for years, you don't want to hurt your back when she is young it will just make it harder when she is older.
Your not taking anything way from her, you are opening the door for a more enjoyable life for all of you. You won't be tried carrying her, you don't have to worry about her falling, you don't have to worry about how to carry other things and her. Trust me it will be easier! And there are so many cool chairs out there for kids today, she can help pick the color and it will be hers. She'll Love It!!!
Three is around the time we got my sons first chair too, he is now 17 and is 5' 10" and @175 lbs.
Good Luck

Amy - posted on 07/16/2010

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My son has similar disabilities we got him his wheelchair at three so he could start school within two months he was out of it.We still use it if we are going to be walking alot or in large crowds. Please don't put off getting her something that will benefit her so much because you are afraid it will be a life sentence for her. it's not going to hinder her anymore than a stroller but it will accommodate her much better. and also i have found people are much kinder and more accepting of my disable child when they see him in a wheelchair and not a stroller, even though you can look at him and see he's disable. also it's great in restaurants. my little guy wont sit in a chair (he's able.just wont), but he no longer fits in highchairs.and as far as vehicles go, my sons wheelchair easily breaks down and slips back together in a few simple steps.it does take a long time. it took us 4 months to get it after the wheelchair company came out and took his measurements and all that but including getting approval from Dr. and all of that more like 6 months. so please get started right away.and again i want to assure you that this piece of equipment will not stop your child's progress as long as you continue her PT and keep her walking when she can for as long as she can, keep pushing her to go further and she may not need that wheelchair at all before you know it.

Celia - posted on 07/16/2010

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It is really hard emotionally to make that decision. Since you will be your child's caretakers well into the future, it may be best to start now. Your daughter will feel more supported physically in a proper chair, your backs will be saved and you can do more activities with your family when she and you are comfortable..like street fairs, shopping, even Disneyland! Also, can I assume she has early intervention services? If she is in a preschool, her teachers will so appreciate having her in a chair to help her participate with her friends and fully access her educational opportunities. Sometimes there is more than a 6 month waiting list to get a proper chair, so I would start the process as soon as possible.
cboyd, Early childhood special educator.

Donna - posted on 07/15/2010

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Our daughter was about the same age when we struggled with the thoughts of when do we get a wheelchair. If you are ready for a full fledged wheelchair you may consider larger stroller that is designed for older children with disabilities. Is she is PT or OT if so they can assist you with the right choice for your daughter. Transporting and traveling will be so much easier.As for shopping I figured a way to connect my daughters stroller to the cart (in front) so we could shop when I was alone. bungie cord worked great for this. I know that sounds kind of tacky but pushing a stroller/wheelchair and a cart is kinda difficult.
If you are considering sending her to preschool you really need to consider getting her some mode of transportation, even if its just for getting from place to place. When we are at home our daughter hardly used her chair, when she arrived at school she got out of her chair,etc. I hope this helps!

Amy - posted on 07/15/2010

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I completely understand where you are coming from. Our son is 5 and also has several physical health issues, we got his wheel chair when he was about the same age as your daughter, believe me that was a true blessing, so yes I would say go for it, they make some very modern looking ones, our son has one that colapses like an umbrella stroller so it doesn't take up alot of trunk space, it fits in our car trunk with lots of room for anything else you need to put in there. God Bless and hope all goes well, we just told our PT that he has own grown the stroller and she took care of it, and insurance usually pays for it. Amy Guidish

Andrea - posted on 07/15/2010

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Hello, nice to meet you -- I agree w/ Catherine's reply.. if your ABLE to get a wheelchair, I'd get it & certainly encourage your child to walk when she can, but when she can't, the wheelchair would be there for you..

I'm soon to be in the same boat as you.. my daughter is 2.. she has NONE of the same "diagnosis'" that your little one has, but due to Hydrocephalus & Cerebral Palsy she can not yet walk ( or even sit up without support ) Her Physical Therapists feel that she WILL walk someday, but like YOUR daughter.. They think she'll only be able to walk short distances & will DEF. need a wheelchair for longer distances & I was wondering myself at what age I should GET her that wheelchair b/c we do a lot of carrying her around as well as using her stroller. ( she's 26-27 lbs. ) I'm thinking that I'm going to wait until she can SIT unattended and THEN get the wheelchair ordered.. unless they make some sort of reclyning

Kayla - posted on 07/15/2010

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We have the Jazz easy special needs stroller. My dd is 5 and 34 lbs and it works great for her. it does not look like a wheelchair. it looks like a oversized stroller. We love it.

Melissa - posted on 07/15/2010

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My 9 yo just got a wheelchair about a year ago. She was born with bilateral hip dysplasia and has nerve damage in her lower extremities resulting in continued weakening of her lower extremities and poor muscle tone. We got a large jogging stroller which we used forever. Even once she was over the weight limit, she was still able to fit well in it and it pushed just fine. It wasn't until about a year ago that she just couldn't fit in it anymore. It lasted and is still being used today with my younger daughter. Now, we have a wheelchair for her. We do not take it with us everywhere as it is big and heavy. We encourage her to walk as much as possible because the therapists said once she loses what she has, she won't be able to get it back. But when we are going places where we need a seat, we do load up the wheelchair. It's just not easy loading and fitting a wheelchair and a stroller nor can you push both at the same time. When she got too big to fit in the front part of the buggy at the store, we started lifting her and putting her in the back part of the buggy. Now we look for the giant buggies that have the children seats on the front of them and she sits in those. I wish you luck with all that you are going thru. It doesn't get easier, but you learn to make adjustments that help along the way. Whatever decision you make, it will be the right one for you. Also, you may want to talk to her doctor or therapist about it, they may be able to help you make a decision.

Michele - posted on 07/15/2010

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My son Hunter has c.p. and can not walk at all. We got him measured for his first wheel chair when he was 18 months old. He was 2 yrs. old when he got it and i was so surprized at how fast he learned to get around. He is now 10 yrs. old and has both a manual and power wheel chair. Even if your daughter can walk a little, you said she can only last for 10 minutes before getting tired, you should look into one now. It will give her more independence and she will feel more grown up with that rather then a stroller. Good luck....

Tonya - posted on 07/14/2010

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My son is 7 he was born with Hypo-plastic Left Heart Syndrome (HLHS) basically born without his left ventrical. He had a stroke at 4 days old and is partially paralyzed on his right side. We just got a stroller/wheeler chair made for him through a company called E-Z Rider i believe. They fitted him for the chair right at the hospital, we had his cardiologist write a script and had insurance pay for it. He gets tired out real quick and has a hard time walking (but does walk). We were carrying him around when he got tired but then we were getting tired and sore he's a small 7 year old....just hit 42 lbs. GOOD LUCK! Tonya Hamel

Lisa - posted on 07/14/2010

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My son has a wheelchair that he uses when he needs. We definitely take it to the mall or longer outings. He has CP and fatigues easily. He is mobile but can now enjoy his time more when he isn't so tired. Could you borrow one for a short time to see if it really is a benefit to you? The Red Cross allows short term rentals. You'll see that she is better able to cope with her days with more energy. We have a MacLaren that he won't use now that he is older. But if she can still fit in one and be comfortable I'd go that route.

Kathleen - posted on 07/14/2010

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We got our first wheelchair for our son when he was 3 years old, it was a push chair not one he could use by himself. It was the best thing we did as it made taking him places so much easier. At age 4 we got him his first manual chair and he used it when he needed it and the rest of the time he crawled on the floor to get around. It was when he was 5 that he got a powerchair and the freedom it gave him to easily move around and keep up with other kids was amazing. So, don't think of the chair as giving up, your daughter will walk when she can and with the chair be able to particpate in life when she can't walk or run to keep up with everyone else. Encouragement for her is important to do those things she finds mean something to her and is important, but sometime you just have to decide what works best for you, her and your family. She may decide a chair is better than walking, if the walking is a huge struggle. At this time though it sounds like the family needs the break from carrying her everywhere, so get a chair.

Karen - posted on 07/14/2010

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Hi there
Both my boys have OI, which means casts quite often and they get tired very easily. They are getting where they dont want to be pushed in a stroller, so we are looking at wheelchairs for them. The kids in our group usually start getting used to wheelchairs at age 2.

Trish - posted on 07/14/2010

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It's perfectly ok for you to request a wheelchair at the age of 3. Our daughter has more complex of a disablity and she had a wheelchair at 2 years old. Don't ever think that you are taking away from your daughter, it can only be a help for her and yourselves. Take care!

Karen - posted on 07/13/2010

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I am the mother of a special needs child as well as an RN who works for a Physiatrist. (This is a doctor that monitors growth and development of special needs children and makes reccommendations re: equipment) The difference between a wheelchair and a stroller is mainly positioning. A stroller is fine if you are just using it for walking long distances or periodic uses. If you are using it for seating and transportation in school or in your home, I reccom. a wheel chair. It is better for positioning and they come with a tray so at school they can play with toys or do their schoolwork. Just remember, when a child gets to a certain weight, wheelchairs are larger and it is very difficult to find ones that fold up to transport. Then you have to figure out how to transport the wheelchair. I reccommend finding a pediatric physiatrist who specializes in ordering wheelchairs. They are more knowledgable as to what your child specifically will need. Just remember just because you have one, does not mean your child must be in it all the time. If your child has the ability to walk, by all means encourage it. Use this as backup.

Amy - posted on 07/13/2010

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We got a wheelchair for my son just before his third birthday (he has spina bifida). It was the best decision we ever made. It gave him so much independence (it is sized for him) and greater mobility to interact with his peers. We are still working on walking with him, but this is his primary mode of movement outside of scooting and crawling.

I hope this helps, and please don't consider it giving up. It's just providing the tools your child needs to successfully interact with her environment as an indpendent person (ie, not dependent on you to carry her).

Amy

Mary - posted on 07/13/2010

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Talk with your daughters peditrician and I would ask for a referal to physical therapy where usually they will do an equipment evaluation for your daughter. I am not sure what state you are in but depending on what she needs for supports on the wheelchair it can take a few months to get and even if your insurance will cover full cost. If you can't get insurance to cover and need a grant try easter seals or united childrens healthcare foundation. They helped us get my son's next wheelchair paid for which was a big blessing. You can email me thru facebook and I will send you the link. Good luck-

Shaun - posted on 07/13/2010

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Hi Amy,
Sorry you are going through this with your daughter. I have a 17 1/2 year old son with a rare disorder, we did the wheel chair when he was young, they did not have the bigger strollers, 10 years ago a friend gave us a convaid to use while traveling to Canada for Dr it was grate.We had a different kind for a few years. Last year we finally got a new one for him,and insurance paid for it. Convaid changed the wording on all there chairs from strollers to wheel chairs so insurance companies would pay for them.He can still walk loves to push it.Good luck.

Stephanie - posted on 07/13/2010

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The biggest problem you're going to run into is school. Our little boy is almost four and has spina bifida. He has limited use of his legs. The preschool he started last year is fabulous because the teachers really encouraged him to use his walker instead of his wheelchair most of the time. If your daughter cannot stand or walk for a moderate amount of time, I would recommend a wheelchair. But if you can get her upper body strength increased, a walker would be a good option in addition to the wheelchair. Good luck!

Lisa - posted on 07/13/2010

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Hi there, we were in a similiar issue a few years back.. She may walk but are we getting it for her and not giving her a chance at walking?? ya know.. We went with one.. she was so heavy and it was killing us as her care givers. you have to think about yourselves too as her caregivers.. we forget that if we are having issues due to years of lifting and stuff that we can't help them later in life..We got our daughters at 3 and it was the best decision.. we were scared that if we waited too long that it would be a scary thing for her rather than be something that she recognizes as helping her. she loves her chair.. it is an extension of her freedom.. she is still working on walking.. but can.. but honestly.. you will not be giving up on her if you get her one.. if anything you'll be opening up a whole new world for her! good luck!

Jennifer - posted on 07/13/2010

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My daughter had dislocated hips when she was born. Make a long story short since her birth in 2004 she has had 3 hip surgeries. When she was probably about 3 I guess she got a wheelchair because she had never learned to walk on her own and she has low muscle tone. She has PT twice a week at school and once at home, speech twice a week, and ot twice a week. She also has horse therapy which is just basicly riding horses for 30 mins. She is 6 now and the wheelchair is strictly for transportation the therapis are teaching her to use a walker but someone has to be right along side of her. My daughter loves her chair and can maneuver it to where she wants it to go. I don't feel like you are taking away from her if it is just for a transportation thing.---Jennifer

Lisa - posted on 07/12/2010

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My little boy has Cp and has had a motorised wheelchair from age 4yrs - very capable of controlling it himself. I would suggest the sooner the better for your backs sake.

Jennifer - posted on 07/12/2010

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I broke down and ordered my son's wheelchair, he'll be 3 in October. I have hopes that he'll walk, but he's getting to big for the stroller and to heavy to carry. Talk to her Dr, see what the Dr says, even if you don't use the wheelchair all the time, it will be there when you do need it. Good luck! :)

Iridescent - posted on 07/12/2010

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Mary, our family is some of almost everything! Lol! We are mostly German, Norwegian, Swedish, Irish, Polish, but all kinds of races in the last several generations. There is also either African American or Ashkenazi Jewish in our history as well, but nobody is certain which despite family tree mapping as much as possible.

Cassie's disease isn't exactly the same as your daughter's, but is somewhat similar. Instead of a glycogen storage disorder she's diagnosed with a urea cycle disorder with a ton of side effects. She has the more severe form and the only theory as to how or why is the doctors think her "good" X chromosome is inactivated (they found another disease she does carry on the inactive gene, and she somehow displays no congenital defects from it despite its severity and it being a dominant gene). With the severe forms of OTC, 50% are expected to survive past 7 days, 50% not. Of those, the majority pass away by 5 years old even with all the care we do. None with the full disorder have survived into adulthood yet, even with liver transplants as rejection rates are high in those with OTC. And each is different, too. It's hard to know what to expect.

http://en.wikipedia.org/wiki/Ornithine_t...

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