If your child uses a mobility device

NiteNicole · Nov 15, 2010

If your child uses some type of mobility device, what kind is it, how did you choose it, and which doctor helped you?
 
I was posting here about a year ago when my then almost four year old daughter started having trouble walking. She got a vague diagnosis (which is really more of a description) for some type of dystonia with her right leg. Over the past 11 months, she has been steadily getting better with a few small set backs. Her overall progress has been great. She still can not run, but she walks well, climbs, takes stairs, jumps on a trampoline, rides a bike...everything but runs. If she gets VERY sick, run down, tired, etc, she will have a few days where she doesn't do well at all. When she's doing well, you wouldn't know anything was going on with her.
 
Last Friday she was kind of wobbly. This morning, she can't walk. Can not walk at all, not even a few steps. The right leg just doesn't hold.
 
I was trying this time last year to get her some kind of mobility device. Her ped said talk to her neuro, then we changed neuros and she started to improve and quickly didn't need anything. Today, she can not manage on her own. She's almost five, she's tall, she's heavy, I can't carry her and frankly, she deserves to be able to get around by herself. No one seems interested in discussing this with me.
 
Should I just go buy something? I don't know where to look, what she needs, or what's out there? It is just her right leg so I think I've seen some kind of rolling walkers that should help her out. At least she could catch and steady herself instead of falling. Even with me holding her hand, I am only keeping her from hitting the ground - there's nothing I can do to help her WALK.
 
She could be just fine tomorrow...or sometime next week. It could be that this will just happen once or twice a year (as it's not been this bad in a whole year, and she's only had two bouts with "off" days in the past six months) but when it DOES happen, I want her to be able to get herself around without having to wait for someone to help her. She deserves that much.
 
It's so unbelievable. Last week she was climbing ladders and slides at the park. Today she can't walk.
 
Any ideas?

anj_rn · Nov 16, 2010

I could not read an not post. My DD does not walk at all, so we have a wheelchair. Our Physical Medicine & Rehab wrote our script for us. Our PT set us up with an agency that comes out and shows us different options. Our PT then had to write a letter of medical necessity so our insurance would pay for it. We also have other equipment that we got from the same agency (Custom Healthcare). Our other option would have been to go to the wheelchair clinic offered at the PT/OT center where our PM&R doctor practices.
 
Any doc can write a script, but I would suggest a PT to help evaluate what your DD will need.

lilyka · Nov 16, 2010

I am of no help. But I could not read and not respond. How awful that you are having so much trouble getting a simple answer. I hope you can find someone (I think our physical therapist would be the best place to start) to help you and your daughter out.

NiteNicole · Nov 16, 2010

Thanks so much for responding. It has been a very hard day.
 
Part of the reason we're having a hard time getting someone to help us out is that when she's fine, she's FINE. She can't run but she can move really fast, her gait is now normal, she can climb and ride a bike and swim. So when we call the doc and say she's struggling, I don't think he really GETS it. I am taking her to see her neuro early tomorrow. While I hope she's on the upswing (she fell asleep at like 7 tonight, which for her to just FALL asleep is unusual anyway so I know she's tired or getting sick), he will have a chance to see that she can. not. walk. 
 
I think even crutches would help a LOT because she could just take all the weight off that leg when it's not cooperating.
 
anj_rn, she's had a PT eval but it was after she started meds. While she wasn't walking normally, she was walking in a halting and slow way. They said she needed PT and OT but by the time we got through haggling over who would pay for it (we would have, our insurance covers nothing), she was improving so quickly she didn't need it (thank God).

anj_rn · Nov 16, 2010

I would recommend video taping her struggling. Several short clips should suffice. It is very hard for a doc to understand when he just sees a snapshot of you DD in the office. Watching a few minutes of video will help the doc understand what is going on and you can get a better diagnosis. IME crutches are not the best thing for a young child as it takes a lot of coordination to get used to them (and your DD would only be using them when ill). However they do make walkers that would help her with balance. 
 
Since you mentioned insurance, you might want to look into what your insurance covers in the way of Durable Medical Equipment (DME), most have lists of certain diagnoses they will cover and a monetary cap. If your insurance will not cover DMEs, then you can just buy a walker or crutches on your own (you only need dr's orders and PT eval for insurance to pay for it).

NiteNicole · Nov 16, 2010

She is much better today. Not back to normal, but much better. I am KICKING MYSELF for not video taping her yesterday. Even without that, today is a big HUGE step back from the last time he saw her and she could use some help.
 
We have private insurance (which is apparently just a nice way of saying we want to pay for everything ourselves) and it covers nothing. Anything I buy, we will be paying for. I guess we can at least skip having the $450 PT eval again.
 
Thanks for your input!

starlein26 · Nov 16, 2010

If you'd be paying for this out of pocket, I'd recommend the Maclaren Major stroller. It's a great mobility device for bigger kids and one of the cheapest.
 
:hug I hope you can figure out what's causing her these relapses/regressions. That sounds so scary.

coyotemist · Nov 16, 2010

Shriners Hospitals for Children!!! Do you have one in driving distance? Everything would be free, the PT eval, the docs, braces if needed, crutches, etc etc etc. 
 
However, here the appointments are 3 months out, so you have no idea how she will be that day. But with video clips and things hopefully they can help you. It sounds like she has something rather concerning, have they found a root cause?

NiteNicole · Nov 16, 2010

Starlein, thanks for the recommendation.
 
Coyotemist, no, they have not tracked down a root cause. They have ruled out brain tumors/lesions (MRI of brain, but not leg), leukemia, and anything they can do blood tests for. There are some genetic tests for dystonia, and there was nothing there. She's had X rays, several times. We have no family history of movement disorders and she hasn't had a stroke or traumatic injury. We just have no idea. Her development was normal, if a bit ahead, and then last fall she started falling down and having trouble walking. We still don't know why. 
 
We saw her neuro today and he doubled her meds. With this kind of random dystonia, there will be good days and bad days. She's been on this anticonvulsant about a year and her progress has been steady - from about where she is now to a normal, steady, strong gait. No running, but moving fast with some skipping (left leg only) and very good/normal balance, etc. The set backs have happened about three times and they were farther apart each time and until this time, each "bad spell" was less sever than the one before. Her recovery time has also improved. The first three times she was either sick or very very worn down so they were expected. This one - who knows. October was a FULL month. She had lots of late nights, long days, park days because the weather was finally nice, carnivals, festivals - this time last year she couldn't do anything so we said yes to everything this year. The time change has also worn her out. Maybe it all just caught up. She is better today than yesterday so maybe she'll gain ground quickly.
 
We do not have a Shriner's here, that I know of, but I will look into it. Medical costs add up quickly.

ciles · Nov 17, 2010

NO advice but lots of hugs!

NiteNicole · Nov 17, 2010

Thanks. It's been a hard couple of days. A week ago she was climbing slides at the park. Today she can't take herself to the bathroom. It is so hard to watch her struggle.

starlein26 · Nov 17, 2010

Big hugs to both of you. I'm sorry for the pain you feel watching your daughter struggle like this.

NiteNicole · Nov 20, 2010

Just an update - the crutches were a huge fail, but she's still trying. We couldn't get any help in selecting a walker so we just went to amazon and ordered the narrowest one we could find and tried to get something in our budget. It is very very basic. It came in today and she's already discovered she wants a basket and a cup holder because "I have to carry my stuff" - nevermind that today, she's actually walking quite well unassisted. I guess it has wheels, it's bright blue, ergo it's a toy. It makes me ill to think about it but she's super happy. I know I should be happy she can walk at all, I know that, but this is about feelings and my heart feels sad to think about her needing assistance at all. I guess it's good to let her "practice" with it now when she doesn't really need it - things like getting through tight spaces and into the bathrooms and such.
 
I'm glad she's young enough for her attitude to be so positive. To her, she's thrilled because it's shiny and maybe it will help her get around better. She doesn't dwell on the negative or feel sorry for herself. I'm so proud of her and totally in awe of this little human who doesn't let this hold her back. She has big dreams for herself and I want her to reach them all.
 
It's frustrating not having a proper diagnosis - of course, what I really want is for someone to say that this is as bad as it gets. She will have bad days, but she will get better. One day she'll out grow it. Things like that.

starlein26 · Nov 20, 2010

It's very, very hard to process these feelings of loss. <img alt="hug.gif" src="http://files.mothering.com/images/smilies/hug.gif"> We've all been there. I tend to cycle, but the lows seem to come less often now, and don't last as long.

NiteNicole · Nov 21, 2010

A big issue for me is that this just started happening when she was 3.5. Before that, she developed normally, could run, etc. So I feel like this is something that is being caused by something and if we could figure out what, then maybe it could be undone. Does that make sense? Like something is causing it but because we don't have the resources to take her to Houston or someplace bigger, she's dealing with this when she could be past it by now. At the same time, as her neurologist said, she's already been through a lot of scary and unpleasant tests and do we want her to put her through more if they may not produce any answers? It's just so hard to know what to do.

carrotsprout · Nov 25, 2010

i wish i would have read this earlier

. my dd has a walker she is not using anymore. she had a very difficult surgery recovery that made it necessary for a while. pm me if you want our walker. it has no baskets or anything cool like that. it really is a miniature version of the one you see old people with. she is almost 4 and a half feet tall and used it at its tallest setting.

beenmum · Nov 29, 2010

Definately see a physical therapist. One associated with a hospital should be free. They can order your child a walker or mobility aid.
 
 shriners is great.

NiteNicole · Dec 1, 2010

carrotsprout, thank you for your offer! We did find one eventually. By the time it came in, she had responded well to the increase in meds and didn't need it but she can get familiar with it just in case she has another low spot. 
 
beenmum, physical therapy is tricky. Our insurance does not pay for it and it's over $400/half hour. It is terrible to think that there are things my child could benefit from and I just flat can't afford them but...that's where we are. We are selling our house, moving to another town, and bringing our bills way, way down so we have more cushion should we need it.

beenmum · Dec 1, 2010

I'm sorry. That sucks.
 
Could you ask a childrens charity to help with PT? Like Presidents choice or Shriners?

NiteNicole · Dec 1, 2010

Right now, she doesn't need PT. When everything is going well, she walks just fine. When it's not, it's different every time. Given the nature of dystonia - sometimes it looks like an ankle rolling over. Sometimes it looks like her hip shifts. This last time, every time she'd put her foot on the floor or even shift her weight, her foot would jerk back up. I'm not sure how PT would approach that. Also, her low points are getting shorter and further between. Her doctor seems to think that as we adjust her meds, she should have fewer and fewer. In the past year she had three big set backs that I can remember, with the last one being the worst but also the shortest. The first one wasn't as bad but it went on for what felt like FOREVER. Then she had one in the middle of the summer that was a quick, but not total decline, and a few weeks totally recovering (that time she had Bible school every day for a week, followed by a short vacation, followed by mono so - yeah, we saw that decline coming).
 
I don't want anyone to think that I'm shooting down ideas or unwilling to consider PT (if there comes a time or if we can find a way to just get her in so she's going regularly - great! I just don't know how to justify that? We're in kind of uncharted territory here. I have not found anyone else whose child has what mine has. I know one person whose child has dystonia and with the same leg but - hers is involuntary muscle spasms where as my daughter's are specific to walking only). I very much appreciate any and all ideas and we're certainly looking into Shriners. I don't know about President's Choice but we'll look into it, thank you!
 
I am so so SO grateful that she doesn't have any pain and that MOST of the time her meds keep her on her feet - so grateful, I thank God every day. It's just that what she has is unpredictable and it makes things like setting up PT kind of nuts. We tried earlier this year and by the time we had an eval (very expensive) and fought with our insurance and found out that we could get a reduced rate - and got them to actually TELL US what the rate was (not cheap), she didn't need PT anymore. I do know one guy who sometimes does free clinics and if I can get in with him, I can at least get him to give me some advice on the walker situation. If she ever has a bad day while he's in office, he'll see her (he's only here a few days/week or month now). So I do have that. Which is way way better than nothing - and as an aside, I really like the guy. He's a very calming influence.

If your child uses a mobility device

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