Standing up

So… A few days ago I posted elsewhere about standing.  Basically I was looking for input about the possible use of standers and at what age that seemed to happen for others.  I got some good feedback, but I’d love more, if you ladies have any.

Z will soon be 11 months.  She can stand, but she does not pull to a stand.  We saw our PT earlier this week and talked about this some.  Her take was that now was absolutely the time to actively encourage standing.  She was not willing to jump to equipment (i.e. stander) just yet.  Z’s big weak point is buckling knees.  Knees are controlled by your quads and her feeling was that Z just hadn’t had time to build strength. (True enough since we aren’t crawling either.) If a muscle isn’t active it isn’t improving.  So, for PT the first step is getting our legs strong enough to support us.  Putting her in a device that doesn’t require her to actively use her legs doesn’t really do that.    Instead, she really encouraged us to just help Z stand and be there to support as needed for as long as she will tolerate.

In addition to that, we have discovered that when we stand the Little Miss up, her ankles tend to roll out a bit.  I don’t want to do anything too aggressive until we’ve had that seen about.  PT and I are in agreement there.

I’ve made an appointment to see our Ortho.  We go in a couple of weeks.  We love him and find he suits us well.  He also is part of the whole team that provides our care via Nemours.  That means her notes will be current for the whole team, etc.  PM&R are there if we need to see them too for some reason, etc.  If we do need equipment, I think they are our best shot at a thorough evaluation and trial.  The only possibility that concerns me is that they are about 2.5 hours away.  If we end up with SMOs or AFOs and they need adjusting, that is a long way to go.   Anyone use an MD in one town and an Orthotist in another?

I also reached out to the SB clinic in Boston.  I had a nice exchange with one of the nurses there who helped me before.  She volunteered to talk to their head PT and have her write up something explaining the pros and cons and general protocol of standing and standers for SB kids.  Said PT is out of town this week, unfortunately.  Hopefully I’ll have something next week.

Having said all that, I’m still a bit torn.  Z is already tolerating more time standing.  As in, noticeably more time daily.  But I can’t always just sit next to her.  A three year old, a teenager and two big dogs all impair my ability there.  Standing is beneficial for so many things that I’d like for her to be able to practice it more.  Thus my possible interest in the stander.  On the other hand, she’s improving so quickly that who knows?  By the time we could get one it might not be necessary.  That would be silly.  Also, she cannot achieve a standing position on her own.  Not sure what I think about that one way or another.

Any experience you ladies can share, insight you might have, is much appreciated.

13 comments

  • When we had a stander, Claire tolerated it for very short periods of time because she couldn’t reach anything, etc. So, her time in the stander was just as time intensive to me as standing next to her and supporting her because I was trying to keep her entertained the entire time–bubbles, etc. My inclination would be to not worry about the stander at this point, but these things take so long to go through insurance that if she does take longer than expected to progress, you might have wished you started the process earlier. Are you positive you can’t borrow one? Another option is to order knee immobilizers-very small/inexpensive. They will force her knees to be straight–I would only use them for about 5 minutes at a time–but they will teach her brain, “this is what is feels like to be tall!”

    Bracing….a good orthotist is hard to find so if indeed the braces were better then I would drive 2.5 hours but I would probably have a phone conversation/look online/ask for recommendations (PTs tend to be good at recommendations) before committing to that drive because, at least in our case, braces need a lot of adjustments. If you do decide to get afos/smos (I would tend toward smos), I would give her plenty of time out of them–she gets so much feedback from her feet that will teach her how to walk.

    I’m not sure if Z is ready for this: http://www.amazon.com/Little-Partners-LP00401-Learning-Natural/dp/B001ECHXVC/ref=sr_1_1?ie=UTF8&qid=1414107022&sr=8-1&keywords=learning+tower

    We love our learning tower! When C was younger, I would put playdough on the counter while I cooked supper. Now, she gets in herself and helps out with supper. Great for standing.

  • These are all great questions, ones that I have been thinking about myself. I don’t have much in the way of answers, but have a few things to share.

    For what it’s worth, Shriners refers all their patients to local orthotists, meaning the orthotist located closest to their homes. Their reasoning is for convenience purposes for the frequent sizings and adjustments.

    The only other thing I have to offer is. . . did you see Camilla’s review of Aqua Therapy? It seems like a great option for building strength and skill without the stress on the knees and ankles.

    Camilla, just out of curiosity, what is Anat’s position on aqua therapy? I know that she says you should not put a child in a position they cannot achieve on their own. But what about aqua therapy?

  • I know at the Anat Baniel Center they said being in the water is great but instead of doing exercises, they would just want the child to explore freely. Same with riding horses–they think its good if you are not forcing the child to do exercises–just let them ride.

  • Thank you ladies. I really appreciate all the extra insight!

    Its the many adjustments of bracing that concern me. Our clinic is not only the 2+ hours away, but it is in a different state. But I’m encouraged to know that Shriner’s refers people elsewhere. I guess we will see what happens. I don’t think my PT has any recommendations. She’s too new to the area, though I expect she could ask others at our practice. We will see.

    I don’t know about borrowing equipment. I haven’t asked anyone. Once we see Ortho (So I can say, “Her doctor wants X”) then I can pursue that if need be. Honestly, Z gets better every day. I’m not sure we will need it. She stood up on her own (holding on to an ottoman) yesterday for about 10 minutes. I’m pretty pleased with that! I am concerned about that foot though. It turns enough that all her toes are not on the ground. Can’t get feedback from toes that aren’t touching.

    Fortunately, on both the bracing and the equipment fronts, we have amazing, amazing insurance. We have a rep we work with and have worked with since before Z was born. She’s awesome. As in she gave me her personal cell phone number, while she was on vacation because we had some things in process at that time. I have to get her approval before we can order equipment, but she’s already told me she’ll approve anything I request. So at least, I don’t anticipate a delay there beyond just getting the document/prescription to her.

    Aqua therapy interests me, but we would have to find a totally different therapist for that and I just haven’t done it. She’s done well enough up until now that I haven’t seen the need for more therapy. I’ll be interested to see what feedback I get both from her doc and from CHB. If it seems really worthwhile we might give it a go, but I’m really keen to not overdo the therapy overall.

    The stuff about AB is something I can’t totally make up my mind about. If we were talking about a typical child, I agree 100% that they should come to all things on their own. But I wonder how that is applied when talking about a child that is never expected to do something, like a paraplegic child. Eventually that child may learn to transfer from a seated position into an assist device to be upright, but that could take many years. Surely the benefits of being upright outweigh the benefits of waiting to develop the ability to transfer totally on their own? And of course, our kids are in the middle on that one.

    Z can absolutely stand. But she hasn’t yet worked out how to stand up, to actually get herself into a standing position. Well… so how does that work? By standing her up, I’m putting her in a position she can’t get into on her own. But once she’s there she can totally do it on her own and stands to benefit. ??? Maybe I don’t understand it just right.

    Anyway, we are in a little holding pattern for now. I’m happy with her improvements in terms of toleration.

    OH, and I had seen that tower once before. We thought about it for Z’s brother, but space is super limited and he is a TOTAL monkey. I fear it would be a hazard because he would just use it to launch himself to the top of the fridge!! Come to that, it is a concern for any equipment. He’s totally in love with her little ZZ chair and will use it any time he can. Taking him into consideration makes this all the more of an adventure.

  • Regarding the ABM philosophy, I’ve thought a lot about it.

    They say not to sit a child up because their brain makes so many connections in learning to sit-up on their own. OK. So we have never worked with her on sitting, though she obviously sits on my lap and in her bumbo, car seat, etc.

    But the more I thought about it, I thought, even if I teach her to sit before she can move from lying to sitting, once she does accomplish that transition, won’t all the connections be made then???

    But where I DO see the problem is when it comes to sensory issues. If I remember correctly, the son of the Group Owner on Baby Center developed a fear of standing (she described it as a sensory disorder) from being placed in a stander. I would go look for the post, but I swear Baby Center’s search function is broken. I can never find anything I search for, even when its an exact match and there are only a handful of posts using that word, like acupuncture, remember?

    So that is my main concern with standers.

  • Camilla, does Claire wear any braces in the water? If so, does it damage them? I’ve read other moms have a designated set of braces for the water. As we are about to be fitted for our first set of AFOs, I wonder if I should be taking this into consideration?

  • I certainly don’t know how you would handle a baby who cannot yet sit without, sooner or later, placing them in a sitting position. That doesn’t make any sense to me. I understand not pushing and shoving them around to make them sit (essentially PT Ha!), but not putting them in a sitting position I don’t get.

    In any event, I don’t see how it could negate the therapy overall. I don’t know anything about ABM really, but I know Fedlenkrais was developed by an adult, one who had presumably learned all the ordinary ways of sitting etc. He clearly still benefited.

    The sensory issues would make some sense. I don’t know that I would care to be strapped into a device all the time. I know we have a little toy that is akin to an exersuacer, only better I think. In any case, we never ever put her in it if she indicates that she doesn’t want to be there. I can see how strapping a kid in for their allotted time period, and ignoring their complaints thinking you were doing what is best, could create some issues.

    TSpar, I don’t know why you would need bracing in the water. Its not like you are there for hours and hours, and the water takes away so much resistance. I would think it would be fine to just have little bare feet. I know the mom and braces you mean, I just don’t know why they’d do that. I’ve never asked because it didn’t apply to us.

  • MrsK, sounds like Z is doing great! I see the ABM essentials as more guidelines and of course, you know your child best.

    I think the primarily problem with putting the child is a standing position before they are ready is that is teaches them the wrong way to stand, “when I stand I feel wobbily, my knees buckle, my ankles feel unsteady, I fall.” However, Z is obviously very high functioning so if she is enjoying it, then I’m sure its fine.

    As far as sitting, the ABM answer to the way the child would learn to sit would be to go to lessons. But, again, if the child enjoys being propped up on a nursing pillow or what have you thats different than being put on a wedge/ball in PT given just enough support to not fall but feel like you are going to.

    Lots of kids who do ABM use wheelchairs (like you mentioned kids who are paralyzed). Anat and I have discussed C using arm crutches in the future if she is unable to learn to walk independently. However, we will only use them if her mobility plateaus and she is clearly not advancing. In typical PT, they use crutches as a learning tool to work toward walking–if we had let C use crutches when they were recommended by PT, it would have reinforced a lot of bad patterns and I am confident she never would have learned to walk independently but probably struggled with them for a few years and then stopped using them all together. I don’t know for certainty that C will walk independently but if she doesn’t, we will have let her develop as naturally/as much as possible and then introduced crutches when her body was functioning the best it can. A friend of mine who whole heartily believes in ABM and whose son routinely has lessons has her son use crutches (he is actually borrowing Claires:)), a walker, wheelchair, etc. Anat probably wouldn’t agree with the crutches–and I’m not sure about the walker–but my friend sees gains made in ABM lessons but then also deviates from the method as she sees beneficial.

    Anat strongly emphasizes floor time. Its not that you shouldn’t use a wheelchair, you should just allow for a lot of floor time–allows the child to make connections. Anat would say that movement and learning are connected.

    We don’t actually go to aquatherapy–just use a hot tub. C has worn braces in the water in the past and it does wear them down but doesn’t destroy them. Currently, her feet are flat enough post-surgery that she goes barefoot.

    From what you describe, it does sound like Z would benefit from braces. Our local hospital lends out standers/walkers. If your insurance is good, I see no harm in ordering it and if she doesn’t need it, just give it to someone else. Someone would be thrilled to have it, I’m sure. 🙂

  • Thanks! You clarified a LOT!.

    We do tons of floor time. In fact, though you shouldn’t tell my PT this, we really only do PT when we are there once a week. And if I see she is trying to do something we’ve done, occasionally I will boost her a little, or support her or whatever. But mostly I let her hang out with her brother and whatever toys are out. I often put her where things are just out of reach, which never fails to motivate her to move.

    She definitely loves the standing. And if she’s not in the mood, we don’t do it.

    All the rest is in “wait and see” mode for a couple weeks, but will update you when I have more.

  • Ok. Yesterday was the day we went to see our Ortho.

    Basically he said that we had no real reason for concern regarding her feet. Yes, she’s placing them oddly. Yes, maybe she would get some benefit from bracing. But not bracing won’t do any harm. She has full range of motion and can lift and bend her legs in all the right ways. If her ankles prove to be a real hindrance somewhere down the line, they can always be braced then. He wondered if our PT was being pushy about braces. (She isn’t.) His comment was (with regard to walking) “She’ll have a totally normal life”.

    He told us to expect her to be 2-3 before she really walks. That’s something we were already anticipating. He also wrote a script for AFOs saying that if we can get them for free or nearly free it wouldn’t hurt to get them and use them occasionally as learning tool, much as you described, Camilla. But! If they were expensive, if we couldn’t get a second pair in a year as she grows, his advice was don’t bother, or at least wait another 6 months or more until she was bigger. It won’t be worth it and it will be expensive and challenging.

    He brought up SMOs. He said they were preferable but he also was very confident (he’s got about 30 years experience) that they simply would not be able to make them to fit her tiny, tiny, tiny feet. (Her little feet are about 3 inches long.). He likes the Sure Steps. Maybe later, when they can be properly sized.

    He saw no need for any equipment of any kind, from his perspective and was in favor of letting her grow as she is, giving her time to stand as we can and just allow her to develop as naturally as possible.

    His office is going to call Hanger here and they will call us. We can see about the braces and the cost that way. In our conversation in the car hubby and I both agreed we would take his advice. If they are free, great! If they cost much more than a small co-pay, we won’t bother.

    I’m pretty pleased with that.

  • Thanks for the update; sounds like a very encouraging appointment! Glad you and the doctor are on the same page–it sounds like he is taking a balanced approach that fits well with your perspective on letting Z advance naturally.

  • Wow, that is great news! I love it. Good information on tiny feet and SMOs. I was going to ask our local orthotist if he could fit her for Sure Step SMOs, but perhaps we will have to wait.

    Keep us posted on the AFOs.

    Yeah Z!

  • I thought it very interesting that he found her little feet too small. We just got today a pair of the Tsukihoshi shoes in an 18. Its the smallest they have. They go on and stay, but they really are too big. Still, for now, they offer some support and I’m impressed with the shoe and expect to get a lot of wear from them.

    I also think that it was interesting that even given how well he expects her to do, he STILL didn’t expect her to really be walking for a couple years. I find that so telling about the condition over all. Its so hard not to at least wonder (never mind the occasional worry) about how that will all work out. Nice to have someone on our team whose experience can really inform the “long view”.

    Have a great weekend, ladies!

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