manual wheelchair: what features plus renting vs buying

[clanmcculloch]

It's looking more and more like DD12 will need a wheelchair for our upcoming trip. She can walk but when she walks any extended period of time her pain becomes much worse. Recently she said her pain was up to 8.5 out of 10 after a class trip to a museum. Even with her PT she's only gone up to 7.5 out of 10. I just can't imagine her doing the walking required in the various parks (DL and non-DL) but she can walk around the airport and for shorter outings and outings that don't involve several hours of walking. I do plan to talk to the doctor this afternoon about pain management since NSAIDs are really bothering her stomache but I figure even with that she just won't be able to handle the kind of walking required for this trip so figure we need a chair.

Last time we got a chair I didn't do any research into chairs and I know there could have been definite improvements in what we got.

Features

She's 4'10.5" and average weight so I assume I want a chair that's 16" wide and 16" deep (I saw that some 16" chairs are only 16" in width but are 18" deep). Does this seem right? Do I need to look at height at all? I suppose I should probably look at how high the handles are since DH is tall. Last time she needed a wheelchair I ended up having to push the whole time because he had to hunch a bit (well, plus he was 2 weeks out from having hernia surgery so I was trying to make sure he didn't do too much).

She needs the chair for joint pain in her right leg. She hasn't had any swelling for over a month, even when she spent the day walking (really around 4 hours once factoring in transportation and they weren't walking this whole time) around a museum with her class (MAJOR pain for the following week but no swelling). She wears ankle braces on both feet though the braces are not at all clunky or heavy. Based on this, do you think she needs a chair that has supports behind the calves and/or that allows for foot elevation? Is there something else you would recommend?

Are there any kinds of accessories that anybody would recommend? Is there any particular style of bag better than another for the back of the chair? Do you worry at all about tipping when the person gets up and you're carrying a bag on the back? Do you recommend anything like a cup holder or anything else? What about seat cushions or arm covers? What do you recommend getting and what is a waste of money? I'm considering Frogg Togg Chilly Pads for under her since we'll be travelling in July.

Is there anything else I should consider?

Rent vs Buy

I called the most recommended company from what I can see and they don't deliver outside of Orange County but the first half of our trip is in Passadena so unless we want to pick up the chair (I don't want to), they're a no go. They gave me the name of another company that they recommend but so far I haven't been able to get them on the phone which is frustrating me plus making me wonder whether or not I can truely count on them. So, I'm not getting a great feeling about renting in CA.

Another option would be to rent at home. I haven't begun looking at options in my area but I can't imagine that there aren't any.

Based on what we paid in FL, I figure plan for around $10 for the rental. We're going to be in CA for 13 nights (14 days) so I figure we're looking at around $130. I've seen 16" chairs for sale for that kind of price. I don't know if they have the kinds of features I should be looking at but they look pretty nice based on my very limited knowledge. Obviously if I'm going to buy one I'll want to make sure that I get the precise features I want while if renting some things won't be as important. But, considering the nature of her problems I would imagine tht I'll probably end up needing a chair for her at other times as well. I don't see her growing beyond 5'2" if she's lucky so I figure the size chair she'll need now will likely be fine for a long time. Even if we only use it for this one trip though, depending on the price it might be worthwhile. But, if we have our own chair or rent locally then I have to deal with the chair in the airport plus gate checking and waiting for it. We'll also have to deal with storage at home plus maintenance.

Sooooo...... Anybody have any advice? If your advice is to stop overthinging things, that's fine too. I'm prone to that as some of you around here know.

 

[WheeledTraveler]

Personally, I'd rent now, but start looking into whether getting a wheelchair in the future might be a good idea. I don't know if you'll be able to find any wheelchair with higher push handles (even custom wheelchairs don't often come with push handles high enough for a tall person to push comfortably). As far as cushions go, you could probably use anything from a regular chair cushion to a pillow to a square of foam with some sort of cover. I've seen all of those used on rented wheelchairs with feedback from the users that it's more comfortable than nothing on the wheelchair.

Longer-term it'd be better to get a chair more specifically set to her size and those are not cheap. (As in, get a chair that's actually measured for her and where things like cushions and back and stuff are set by what will help her the most.) Even if someone else is pushing it, she'll be better off with something more custom to her so that it really fits her needs, not more generic needs. The 16" chairs you can get for $130 are likely not to really fit her all that well longer-term. There's actually a huge difference in how you fit a wheelchair between 4'10" and 5'2" especially when you take into account changes in body shape as you grow. (I'm 5'4" and use an 18x18 wheelchair just because of my body shape, but I know people who use the same sized wheelchair who are 5' or smaller, for example, just have a different body shape.) That will also give you more choices about things like the leg-rests which it sounds like could be more important. Storage and travel are actually some of the easiest things to deal with when it comes to a manual wheelchair.

Good luck with talking to her doctors! Don't be afraid to push about pain control, especially for the trip and make sure to be clear about the GI distress from the NSAIDs (non-steroidal anti-inflamitory drugs). No, you don't want to have to worry about serious pain medications becoming ineffective as she gets older, but especially for short-term things like trips, it's appropriate to use more aggressive pain control when needed. You might also want to ask both the doctor and PT about non-medication things that might help (I have no idea if TENS machines can be used with kids, for example, but many people do find them helpful with chronic pain).

 

[rewardsinlife]

Oh I understand your pain and confusion I getting a wherlchair! It can be a real pain. Hopefully my experience might help a bit.

I got a wheelchair when I realized it was more expensive renting one each time I went to Disney then actually getting one. So I researched a bit and found the ' Drive Blue Streak Manual folding wheelchair with Flip back arm rests' for about $120 at Walmart. It is sturdy for vacation trips and seemed to be the best thing and cheap compared to others. it does have a strap on the leg Rests which I like since it supports my legs a little better. Downfalls to this chair is that it is heavy. It says It is lightweight...but it must be on the far end of the scale to qualify as that. I am guessing it is about 35 lbs.

I decided to get another chair when I was getting really sick and didn't know if I might be in a wheelchair daily instead of just on long trips. Let's just say I researched and tried to find out as much as possible, yet I was still confused as to what it would turn out when I ordered it. I definitely recommend going into your child's doctor, explaining you would like to get her a long term wheelchair , and have him do the measurements you will need. I ended up getting a quickie lxi that is about 18 lbs. I got a higher back on it since a family member usually pushes me. It is nice, but it needs a seat cushion which costs even more. It is usually about $2500 with the adjustments I made but since I shopped for best deal I got it for $800.

Honestly...if it is just going to be temporary, just for trips, I would get a wheelchair that is not measured specifically and is geared more to transporting to medical appointments and such and vacations. If she is going to start needing it more for daily life, get measurements from dr. , make sure you get a WC that will 'grow' with your child for no or very minimal fee, and look for best deal. There is a lot of choices out there ..do your research.

 

[clanmcculloch]

Personally, I'd rent now, but start looking into whether getting a wheelchair in the future might be a good idea. I don't know if you'll be able to find any wheelchair with higher push handles (even custom wheelchairs don't often come with push handles high enough for a tall person to push comfortably). As far as cushions go, you could probably use anything from a regular chair cushion to a pillow to a square of foam with some sort of cover. I've seen all of those used on rented wheelchairs with feedback from the users that it's more comfortable than nothing on the wheelchair.

Longer-term it'd be better to get a chair more specifically set to her size and those are not cheap. (As in, get a chair that's actually measured for her and where things like cushions and back and stuff are set by what will help her the most.) Even if someone else is pushing it, she'll be better off with something more custom to her so that it really fits her needs, not more generic needs. The 16" chairs you can get for $130 are likely not to really fit her all that well longer-term. There's actually a huge difference in how you fit a wheelchair between 4'10" and 5'2" especially when you take into account changes in body shape as you grow. (I'm 5'4" and use an 18x18 wheelchair just because of my body shape, but I know people who use the same sized wheelchair who are 5' or smaller, for example, just have a different body shape.) That will also give you more choices about things like the leg-rests which it sounds like could be more important. Storage and travel are actually some of the easiest things to deal with when it comes to a manual wheelchair.

Good luck with talking to her doctors! Don't be afraid to push about pain control, especially for the trip and make sure to be clear about the GI distress from the NSAIDs (non-steroidal anti-inflamitory drugs). No, you don't want to have to worry about serious pain medications becoming ineffective as she gets older, but especially for short-term things like trips, it's appropriate to use more aggressive pain control when needed. You might also want to ask both the doctor and PT about non-medication things that might help (I have no idea if TENS machines can be used with kids, for example, but many people do find them helpful with chronic pain).

I just set up an appointment for this afternoon to discuss pain management with her primary doctor. Hopefully she'll have ideas that aren't hard in the stomach. Last night after PT she said her pain was up to a 9 and we have nothing that can touch it without causing significant pain in her belly and even with that belly pain it only helps a bit. The PT did warn us that last night she'd be in more pain but thank G-d this morning she's in less pain than she's been in since her class field trip last week. The PT worked her knee cap and fibula back into their correct positions and worked knots out of the supporting muscles before doing exercises. Her PT did mention that she wished DD12 was older because she could probably benefit from some kind of ultrasound therapy but that she avoids it in kids who are still growing as it could affect the growth plates. I don't know enough about TENS machines to know if that's different enough to be safe. I could ask the PT about it. I know a TENS machine helped my mom with her back issues for a while, until she started reacting to every type of adhesive that they tried.

I figured the high push handles were probably a stretch but I was hoping somebody might have ideas but we'll manage fine if we don't. It's probably better for me to push rather than him anyway because he has a tendency to not pay as much attention to where her feet are and is more likely to bump her into others or even walls than I am. This was definitely at the very bottom of my priority list but I figured if I didn't ask then I wouldn't know.

What do you think about the necessity of the leg supports and lifts? I undertood when she had a broken ankle that we needed to be able to elevate her let to avoid swelling but she doesn't seem to have swelling issues now. If we're renting for this trip do you think the chair we rent needs them? If not necessary in a rental, do you think it would be important in a purchased chair?

If she does ever G-d forbid end up needing a chair even remotely close to regularly I'll definitely get one that's been properly measured to her. I hadn't even considered that they could be customized I guess because I haven't been looking at something for regular use. At this point I'm really just looking at something for when we'll be at places like amusement parks and museums where there's a LOT of walking. How important is a really good fit? As I read this paragraph, I realize it could read like I'm being somewhat sarcastic but I genuinely do want to know the importance. Is there some kind of guide for fitting a chair? As in if I take a tape measure to her to get sizes for upper leg and torso would those measurements tell me at least generally what seat depth and width would be appropriate even if it's not custom fitted?

Just as an idea, these are a few of the chairs I've been looking at. Any thoughts about anything I should be looking for keeping in mind the limited use I'm considering for it? I'll continue to look for rental companies but I don't even know what questions to ask in how these would compare to something I'd rent.

http://www.amazon.com/gp/product/B0055CHLN2/ref=gno_cart_title_2?ie=UTF8&psc=1&smid=AN97WWUM74OXI
http://www.amazon.com/gp/product/B009AJF1FG/ref=gno_cart_title_3?ie=UTF8&psc=1&smid=A1D8I89I9ADU5
http://www.spinlife.com/Medline-Excel-K3-Lightweight-Wheelchair/spec.cfm?productID=86120 (without the elevated leg rests if I can find out that they're not necessary)

Thank you so much for all of your advice!!

 

[clanmcculloch]

Oh I understand your pain and confusion I getting a wherlchair! It can be a real pain. Hopefully my experience might help a bit.

I got a wheelchair when I realized it was more expensive renting one each time I went to Disney then actually getting one. So I researched a bit and found the ' Drive Blue Streak Manual folding wheelchair with Flip back arm rests' for about $120 at Walmart. It is sturdy for vacation trips and seemed to be the best thing and cheap compared to others. it does have a strap on the leg Rests which I like since it supports my legs a little better. Downfalls to this chair is that it is heavy. It says It is lightweight...but it must be on the far end of the scale to qualify as that. I am guessing it is about 35 lbs.

I decided to get another chair when I was getting really sick and didn't know if I might be in a wheelchair daily instead of just on long trips. Let's just say I researched and tried to find out as much as possible, yet I was still confused as to what it would turn out when I ordered it. I definitely recommend going into your child's doctor, explaining you would like to get her a long term wheelchair , and have him do the measurements you will need. I ended up getting a quickie lxi that is about 18 lbs. I got a higher back on it since a family member usually pushes me. It is nice, but it needs a seat cushion which costs even more. It is usually about $2500 with the adjustments I made but since I shopped for best deal I got it for $800.

Honestly...if it is just going to be temporary, just for trips, I would get a wheelchair that is not measured specifically and is geared more to transporting to medical appointments and such and vacations. If she is going to start needing it more for daily life, get measurements from dr. , make sure you get a WC that will 'grow' with your child for no or very minimal fee, and look for best deal. There is a lot of choices out there ..do your research.

I pray that it'll only ever be something for trips to places like amusement parks and museums, basically places that require significant walking. I really pray she never gets to where she can't walk day to day. Right now I don't see her needing one day to day in the forseeable future but you never know what the future holds.

The chairs I'm looking at are all around 35 pounds. I hadn't really thought about what that feels like to carry.

It does sound like you went through the exact same type of thought process I'm going through right now with this decision making. It does help hearing from somebody who's been in this position and hear what they ended up deciding. For the original purpose, other than the issue of weight, were you glad you started off with the cheap chair or do you regret choosing that option to start? How did you decide on what dimensions you needed?

 

[Fuhnuh]

clanmcculloch, I really feel for you. I hope you find the information you need to make your family's trip wonderful.
DD12 has discoid meniscus in both knees and had to have surgery after cartilage tears when she was 6 and 8. She has bouts of discomfort, but has made it through 5 trips to WDW and DLR without incident until last summer. She was about 5' or 5'1" at the time. She had grown 5 inches in the last year and 10 days into our vacation, her left knee went awry. We rented a 16" chair that seemed pretty square, but I don't know how deep it was. I know the first chair we got her was deeper and it seemed to fit her height also. We probably could have made do with an 18" chair, but the first one we got at the resort was really big. The 16" chair had support behind the calves and an elevation option and I know the latter came in handy when her pain seemed to lessen when we could find the right positioning for her leg. After several days in the chair, DD12 did ask for a pillow (a Perry the platypus pillow) to sit on. While I don't know if her pillow choice was the most functional, it did give her a lot of relief on our extended vacation. She never complained about her arm rests or the need for a cup carrier, but I remember carrying her cup while pushing a few times. I had a small backpack that a put over each handle on the back and used that for storage. She usually doesn't complain about heat, and didn't w/o frogg toggs during our August trip.

I know that each child is different and I don't know if what worked for us will work for you, but our chair rental saved the last 10 days of our vacation. She was in enough pain that I had to transfer her onto the rides for the first two days and couldn't walk more than a couple steps until four days after our return home. To be truthful, after almost a year of her knees behaving better than at anytime since she was 5, I am starting to sweat a bit about our return on July 24. We went to DLR in April with DD12 and she had the best time she has ever had there, so I hope the resort brings your family the same joy and relaxation.

I imagine that you are pretty set on buying/renting a chair and I think it is a very good idea. I wish last summer I had the foresight to get her a chair earlier in the day.

 

[utterrandomness]

Her PT did mention that she wished DD12 was older because she could probably benefit from some kind of ultrasound therapy but that she avoids it in kids who are still growing as it could affect the growth plates. I don't know enough about TENS machines to know if that's different enough to be safe. I could ask the PT about it. I know a TENS machine helped my mom with her back issues for a while, until she started reacting to every type of adhesive that they tried.

As far as I know, a TENS unit is more similar to the IFC (interferential currents) used at some physio places. I don't know if your daughter's physio uses it with her. It's one with the pads and the prickly feeling (good description, I know ). I would ask the physio about a TENS unit. I've been thinking about getting one myself.

 

[clanmcculloch]

I wonder if my mom still has her TENS machine? Hmmmmm.... We see the PT tomorrow for in-pool therapy and I can ask her about her thoughts on it tomorrow.

I'm not 100% decided on renting vs buying but I am pretty much decided on getting a wheelchair for her. I just can't see her being able to walk around DL or Universal. I'll have to look at the other places we'll be going and decide on a case by case basis after looking at how much walking is involved in each place. For instance it looks like in the Warner Brother Studio Tour we'll be driven around most of the time and I'm thinking it'll be more fun for her to be able to walk around herself at each of the stops so I'll likely leave it in the back of the van for that one.

DD12 does have a Mickey "pillow pet" type pillow. I think the head is pretty big though. I don't see being able to use that. It does sound like I'll be able to use just about any cushion that's around the right size so that's good to know. I'm thinking of the frogg togg pad partly because of the material of the chairs being the kinds that make me sweat like crazy but if there's a cushion then I guess it won't be nearly as much of a problem. They're pretty cheap though so I might get one anyway. Heck, it might be nice to have them for when we're sitting by the pool.

So a regular backpack sits well over the arms? Last time I ended up looping the strap of my cross body bag over the arms and she could feel it at the back of her head with the way it lay.

I know it was a 16" chair we rented a couple years ago but in hindsight I really don't know the depth of the seat. I've only recently discovered that this number really only reflects the width. Here's how she fit in the chair 3 years ago. She's only grown 2.5" since this time (a separate issue that we're addressing, or at least I've been assuming it's separate and no doctors have considered any possibility of a connection; she's resumed growing since going gluten free and I don't think the leg and joint issue is gluten related as this current leg problem is since going gluten free though she's always had loose joints in her feet and ankles).

 

[utterrandomness]

Double post.

 

[goofieslonglostsis]

It's looking more and more like DD12 will need a wheelchair for our upcoming trip. She can walk but when she walks any extended period of time her pain becomes much worse. Recently she said her pain was up to 8.5 out of 10 after a class trip to a museum. Even with her PT she's only gone up to 7.5 out of 10. I just can't imagine her doing the walking required in the various parks (DL and non-DL) but she can walk around the airport and for shorter outings and outings that don't involve several hours of walking. I do plan to talk to the doctor this afternoon about pain management since NSAIDs are really bothering her stomache but I figure even with that she just won't be able to handle the kind of walking required for this trip so figure we need a chair.

You'll want to aim for not just symptom relieve but on getting her into a pain management program. In these programs she gets proper guidance in learning how to LIFE with pain. It's an allround treatment that looks at both physical and emotional/psychological/human spirit. After all; both are a cornerstone in life, so focus on just one of them will built something that will always come crumbling down because of one being less "durable" than the other. That translates into medical stuff like PT, OT, HT and all kinds of treatments that could be find beneficial but also stuff like social work, psychotherapy, you name it. To teach her how she can manage her life. Not just pain, not just health, but her life which amongst other does include pain. Big lesson amongst others is how to balance all she wants to do with what her body can handle. A difficult balance anyway, but for a (upcoming) teenager even more so. At the same time; when in the proper programs and ready for it, it will give her tools and skills she will be able to use a life long. Now focussed on pain, but she'll soon enough come to realise it really are life lessons in a way.

Anyway, I'll stop rambling but both shortterm and longterm aiming on an allround program might be something to consider.


As far as the chair; investigate if she might not already be able to get a (partial) coverage through your insurance. You will not want to get ANY chair without giving yourself a crashcourse in this. Users can tell you generics, but an OT can give you a crashcourse how to translate that to DD's body. Not just that, but they know more about all the options out there.

Pushbars; such a subject not to sweat it. Many, esp. pediatric options, nowadays have the option of height-adjustable pushbars. Sometimes are a higher fee, but not so much it would break your bank.

Given the feelings you have considering possible diagnosis; I would definately get an OT involved. Now. Even if you do end up renting, just so you can get a good feel of options and pitfalls. Obviously size is of importance with kids, but with many issues it is not that important to fit a body very sleekly. If you are right with her health, for her that can make or break. A chair that has the support on wrong places and lack of on places she needs it, can make her end up in the same amount of pain or even worse than she has experienced already. Your legsupport question is very illustrative of why right support is so important and why generic knowledge of us here will be too lacking for DD's situation. She really needs that expert eye to help you help her out.

Oh, another bonus of an OT; many can help try out more options before buying/getting covered, so you know IRL if a brand and type indeed works for your DD. For ownership groth is a big factor with kids, but there are good options that can grow along with a child.

Same if you do end up renting. Rent at home and try out beforehand, so you know from experience if indeed that is the right option. Costs a bit more for the trying days, but worth it to rule out renting something that ends up hurting her like hell after half a WDW-day. OT could help you out, even if you just go once for a general "give me a crash course, what the heck am I looking for?".

Bags? So not a subject you want to take into it now. It can be interesting enough to sort out wheelchair-land when you are so new without this. It's not like the bag is a medical must, so you'll cross that bridge after having found the chair. And besides; most soon enough end up using whatever normal bag, basically anything but "special" wheelchair bags. And that is not just because of fashion sense (not all care about that ).

Cushion, materials etc; even more reasons why you do want to get some professional help with this from an OT. Even more so if you know DD to have any skin "issues", given what you suspect. That can rule out certain materials like for instance skye for any location she might have bare skin touching. Sticky for all folks, but with this diagnosis there is a group that literally rip their skin off when in contact with skye and bare skin.

Cushions; for many that just have a mobility issue not that hugely important. But; your DD does not just have that. So it could become much more important. There are literally thousands of brands, types and whatnots. That's enough to go crazy. An OT can help you translate DD's troubles, issues and what nots much quicker and easier into much smaller group of options. And distill from there on. Both on what DD will already tell her (ouch, or love it) but also because they are trained to see and feel certain possible problems before a user sometimes does. For instance a cushion that DD loves, but results in her sitting oh so slightly twisted of which the OT knows it will cause her pain later on in one of her other trouble areas.

Yes you are overthinking. But, if you want to scale that down but not worry about "oh boy, oh boy don't want to miss anything and kick me in the head later on" then I would so recommend an OT. If not overly clear by now. They really make worlds of differences in this. And not just this, but in so much more things DD can have difficulties with. Whether it being her needing some other aid in the future or for instance can need some help learning tips and tricks how she can do activity A, B and C in a less painfull way for her. Sometimes unfortunately it takes some trial and error to find a good, and fitting to your DD, OT. But once found? An OT is a huge friend for life. Huge factor in optimizing quality of life.

 

[clanmcculloch]

DD12's PT has already taken care of a referral to an OT who she's comfortable with (she told me this yesterday). I'm waiting to hear back from the appointment person to see if a specific appointment next week is available or not. There are a lot of questions and considerations you listed that I hadn't considered might be good ones for an OT so thank you. You've given me a lot to consider and ask about.

DD12 doesn't seem to have any skin fragility issues thank goodness. The only real scars she has are from deeper cuts where she ended up picking at the scabs meaning normal kid scars. She doesn't seem to get cut easily other than her frequent nose bleeds which are allergy and dry air related. She does seem to always have bruises but luckily they don't typically hurt.

I know I need to look into getting her help with long term management. I'm right now at a stage where I think my head's spinning a bit and I can only focus on so many things at once so I'm focussing on getting her through her current leg issues. Once things have gotten back to more of her version of normal I'll follow up with longer term management. I probably need proper diagnosis before I can really focus on longer term care anyway since treatments and strategies will differ based on that diagnosis. Yes, the emotional side will be the same regardless but maybe it's just me but I find it easier to deal with the emotional stuff when I have some kind of plan for the physical and we're still not there yet with the plan for the physical. I'm spinning in circles with what I'm saying again. I'll stop now.

 

[goofieslonglostsis]

Way to go PT! Hopefully she'll be able to get seen soon. If this OT is even just a tenth of what my OT is, it'll be such a rock to built on and a changing point on many practicle stuff.

Your head spinning a bit? I think your head is spinning more than in that scene from the Excorsist. Oh so normal, but oh so not the greatest place to be in. By all means make sure you plan in time to take care of yourself also. Both your health and you the human. You need to keep yourself taken care off to take care of DD. Love, care and compassion for yourself will result in the same for her.

For longterm pain management; diagnosing does help for some things. Esp. if indeed your instinct about what it is turns out right. But; it's not an absolute must. Actually a very large percentage of folks (differs per country, but most who offer it also offer it to those without diagnosis) without a diagnosis are amongst those in these types of treatment. A label doesn't sadly magically help you deal with things. So with or without, that takes time and many times a bit of help and education. Only you as a family together with her treament team can decide what is needed when. But if you do find her running into this to much for your/her liking, it can also be offered without diagnosis. The fact she has chronic pain is enough.

For the symptomatic pain treatment; if own doc doesn't know or what is offered does not feel right, there are options for that also. I wont make you spin worse, but know that if doc finds it difficult theren is still plenty hope.

For now; try if cold or warmth or massaging can help her pain. These 3 can help by all kinds of causes her pain might have. Are easy to use, safe (remember when using cold; never apply icepacks directly to the skin) and she could perhaps even manage herself. That warmth made big; shower or taking a bath. Plan a rest afterwards though, as it relaxes so much that being very active afterwards can cause (more) pain again when muscles are still so lovely relaxed.

And are you aware of the importance of keeping up a steady level of her meds? If she doesn't take her pill until in too much pain, it'll work less. Best results come from not waiting too long before taking a painkiller if need be and upkeep the levels of it in the system during the day. Kind of like how you used to deal with when a young child had a fever if giving something to supress it.

 

[clanmcculloch]

I'm really glad to have found this PT. She works at a center that offers a wide variety of services but does a lot with special needs and physically disabled kids which I think makes a big difference compared to places focussing on sports, injury and surgery rehab. So far I'm pretty happy with her. DD12 is particularly fond of the fact that the equipment is designed to be fun rather than just using typical therapy equipment (effective equipment but designed with kids in mind).

She ices her ankle and knee every morning before school and when it's really bad she'll use a heating pad though I try to encourage the heating pad more often. I'm not sure if the ice is doing anything or not but she says the heat helps some. She does have me rub certain spots saying it helps (she'll direct me to where to press and let me know if she wants it harder or softer) but I honestly don't know if I'm doing more harm or helping. It helps for that moment so I do it when she asks.

I've read that about keeping up with pain meds. It's definitely something I'll discuss with her once we've found something that actually helps and doesn't cause other pain (GI pain).

Take care of me? I don't understand. What language are you speaking? LOL Just kidding. I know what you're saying. I tell people that all the time but I'm horrible about not following this advice myself. I need to remind myself more often. It's hard when your schedule is getting as full as mine is with all of our recent appointments between the group of us. Speaking of which, I have to head off shortly to pick up DD12 so we can make it to the doctor for the discussion about pain meds in time.

 

[goofieslonglostsis]

Grin, awareness is the first step right?

Seriously though, make yourself a priority. If need be literally plan it in your agenda just like doc appintments, pick ups, groceries etc. I know I can't even fanthom running a family with multiple kids with their own needs, but I do know how easy it can be to forget oneself. Esp. see it happen in moms with kids that have a need.

But if you do crash and burn, it will not just be your crash and burn. The whole family feels it. You "can't" be missed, therefor you need to really now start taking moments for yourself. It's easier to take as little as 10-15 minutes a day for YOU, than keep on running now and end up so burn out you'll need months of rest.

Too difficult? Do what I call self-manipulation. You find it difficult to care for yourself, but would do it without a second hesitating if it were something you could do for DD. Well, taking care of DD's mom means taking care of her biggest support and one of her healthcare providers. Even more important; you teach by example. You can tell her 1.000.000.000 times she needs to take time for herself but seeing you do it, will stick much more. Will make it easier for her to follow suit.

Tends to work for me; do something for "someone else" until I can do it for myself. So until I can do it just because I need it, deserve it etc. I'll do it because I am someones daughter/friend who deserves it, needs it etc. from their daughter/friend etc.

 

[Fuhnuh]

It looks like you've received some good advice from fellow members on this board. I may have missed something, but if you are still considering a rental, you might just drop into a local medical rental business with your DD and size up the chairs. At least then, you will be able to have a better idea what size you would be most comfortable with. I know when we have needed a chair locally, the rental places we have gone to had their chairs on the floor and we just had DD12 sit in a couple 'til we found a fit. DD12 also has loose joints (in knees and ankles) which has contributed to her knee problems. She grew 10 inches in two years starting a little after she was 10 and this seemed to alleviate the problems she had with dislocations and locking after her growth spurt settled down (except for our problems last summer). I really hope you start getting answers to help your DD. It can be worrisome and taxing for all involved.

 

[rewardsinlife]

I pray that it'll only ever be something for trips to places like amusement parks and museums, basically places that require significant walking. I really pray she never gets to where she can't walk day to day. Right now I don't see her needing one day to day in the forseeable future but you never know what the future holds.

The chairs I'm looking at are all around 35 pounds. I hadn't really thought about what that feels like to carry.

It does sound like you went through the exact same type of thought process I'm going through right now with this decision making. It does help hearing from somebody who's been in this position and hear what they ended up deciding. For the original purpose, other than the issue of weight, were you glad you started off with the cheap chair or do you regret choosing that option to start? How did you decide on what dimensions you needed?

Absolutely happy withy the cheaper chair! I actually should have waited a bit longer since I am doing better than I was..now I have two wheelchairs. Oh well.

Dimensions were standard. Didn't choose them at all on the cheaper WC. I chose my dimensions for my other WC through some chart I found on the Internet to help you measure. I would not recommend it though because even doing my own measurements is hard and when I bought the chair the person had to do some adjustments to it since I still didn't have some of the exact measurements and the chair wouldn't be properly balanced per say. That is why I recommend if you are going to put down money on a more fitted chair...definitely get a dr. Or physical therapist to measure it out and fill out the chart correctly.

If I were in your shoes..I would definitely stick with a cheaper medical drive chair for the longer trips. I don't have anything neg. to say about it except the weight when trying to pick it up and put it in the back of a car.

 

[clanmcculloch]

Thanks again everybody. You really are wonderful!!!

Good idea about checking out a local rental place for sizing. I am still considering a rental for now. I think I'll ask our PT for recommendations for local places. I can then check them out, get prices, get her sized and decide from there.

I did look at that chair from walmart. I certianly like the price. They had a few different chairs in that price range so after talking to the PT and rental place I think I'll have a better idea about what to look for and whether a cheaper chair would be ok or not.

Oh how I wish this had to do with a growth spurt. DD12's lack of growth is an additional concern.

Something I think I'm realizing about the whole time for myself thing is that my brain is somewhat forcing me to take some time. I've been spending more time than I wanted to admit burying myself in books that are complete escape type books and kind of tuning out everything around me. I've been struggling to find a balance between doing everything for everybody else and completely disengaging from everybody else. Neither extreme is healthy. I really do need to work on that balance because my subconcious mind is clearly telling me I'm not making a concious enough effort to find that balance. I need to remind myself that it's a journey, not a sprint.

On a positive note, yesterday when I got home from work DD12 informed me that the pain which had been a 9 out of 10 before going to school was down to a 3. It was back up to about a 5 by the time we got to the doctor but I'm thrilled that what the PT had done the day before made such a difference. Hopefully the exercises will help keep things in place though I suspect that the PT will have to repeat that same manipulation of the bones and muscles but hey, this is huge progress at least for the short term. Hopefully the exercises will make a difference long term.

Her doctor gave her a topical pain med Voltarol (diclofenac) since the oral NSAIDs have been such a problem. The downside is that there's no concensus as to whether it's ok for kids under 14. She prescribed a half dose and instructed me to only use it when the pain gets really bad which is what my plan for any pain med was. She said if the 1-2 inches doesn't help then call back and we'll discuss our options. Based on our conversation I think her primary doctor still believes this to be a short term problem. I'll deal with that after we get DD12 through this current issue.

 

[emeraldmom]

It sounds like your DD's medical issues are still in flux, so you don't really know what you might need in the future. If it turns out that you don't need to be able to elevate her leg(s), you might consider a transport chair.

My DS11 has juvenile fibromyalgia. He does not normally need a chair. When we are someplace that requires a lot of walking, he absolutely needs a chair. I don't know if you are familiar with them. A transport chair does not have the large wheels a person would use to propel themselves. It has 4 smaller wheels, and has to be pushed by someone. Well, if you flip the footrests up, you can move it with your feet a bit. Because it doesn't have the large wheels, it is super light. I find it much easier to push and maneuver. When it is folded, I can pick it up with one hand. This makes life so much easier when you are on and off buses, or taking it in and out of the car.

I think this is the one we have:
http://www.amazon.com/Medline-MDS80...70526429&sr=8-8&keywords=Transport+Wheelchair

It has a cup holder. I also got another cupholder that is made for strollers and hooked it near the handles for myself. DS says he is quite comfortable. He's about 4'6" or so, 70lbs. I have also ridden in it (not saying how big I am), and found it to be pretty comfortable for myself. I've even used it for my father a few times, he's about 5'11" maybe 200ishlbs, and he did fine.

Anyway, I'm not sure if it would meet your needs or not. If it does, it is inexpensive and easy to use. It doesn't looks terribly durable, but mine has been through several different amusement parks, and it's still doing just fine.

 

[clanmcculloch]

I did consider at transport chairs. The biggest negative to them is that I can't see how she could propel herself when in the chair. I suppose since she can still get up and walk she can just go where she wants while either she or one of the others in our group brings along the chair making it not a big deal now that I think about it more. I was thinking of the previous time we had a wheelchair for her which really isn't a good comparisson. That time she was supposed to be non-weight-bearing on one foot so getting up and hobbling was more trouble than wheeling herself with the big wheels. Since more typically she'll be able to walk normally, I probably should bring transport chairs back into consideration. I haven't figured out yet if she needs to be able to elevate her legs or not. I don't plan to book/order until I get that answer so a transport chair is probably something I should keep in consideration for now and only rule it out if it turns out I do need something with that elevation.

Thanks also for the size info. It's very helpful.

 

[WheeledTraveler]

One of the reasons I suggested renting now is that if you do end up using insurance to get a chair (and if you do that, you want to do it for one of the custom chairs, not the cheap ones) it can draw the process out. Even without drawing the process out it took me about 6 weeks to get my custom chair. When I first got a custom chair, I used it for malls and other places that needed a lot of walking. I certainly didn't use it anywhere near as much as I use it now. The benefit of the custom was that I had a good cushion and it was light enough for me to push myself (I happened to have some money from an inheritance and I didn't trust my insurance so I paid $3000 out of pocket). I didn't have the EDS diagnosis then so we didn't know about needing to keep my joints better positioned, but having the custom chair actually did help with having the right sort of support. It meant that I could stay out longer and do more and be more "normal". I was in college at this point so having independence was key.

Transport chairs are not made to be self-propelled. Even the 35lb chairs that have actual wheels instead of 4 casters, she's going to have trouble doing any self-propelling without risking shoulder problems (even with the ultralightweight custom chairs there are risks to the shoulders, but the heavier the chair the more risk of injury). Either chair means she could get up and push it as needed if she wanted to walk some. I don't know if either is more comfortable. The only thing I can think of as a definite plus to a non-transport chair is that if there's something where casters get easily caught when going over, you can turn around and back over instead, but I'm not sure that's an issue you'd deal with at WDW.

I have no advice on the elevating footrests. I've never used them, but I've never broken a bone and rarely need to elevate my legs.

Just to give you a heads up, Voltaren gel can actually still have stomach issues as a side-effect. I think most doctors assume that because it's absorbed through the skin, it won't cause any stomach issues.

I don't know if I've said this before, but I'm really impressed with everything you do for your girls. I know some of it is because of problems that can't be ignored, but not all parents would be thinking the way you are about supporting things like your DD12's non-GI pain issues. (I'm guessing you're actually in the minority, even, because so many people don't do well with things they can't see.) I totally understand the tunneling because I do it all the time. A certain amount of it may even help because you do need to take some time for R&R. And remember that regardless of what's going on overall with your DD12, you don't need to do it all *now*. It won't hurt her to have things spread out over a longer term. As someone who spent more than 10 years of having active problems before getting a diagnosis, the main benefit to diagnosis has been acceptance from the medical community. My treatment didn't change much because I'd tried so many things that we only would have found new treatment if I'd been diagnosed with something that has specific meds directed at it. But it made a huge difference that I could give other doctors a name and physical medicine doctors could no longer ignore the issues by calling them psych. (If your DD hasn't come across doctors trying to blame everything as psych, then you're very lucky.)