From how it's been explained to me, Terra's ligaments in her ankle are "loose". Apparently, when the muscles that support her arches are trying to do their job, they aren't getting any assistance from the ankle ligaments like they should and thus get tired more easily than normal and sore. It seems to only be a problem with more extensive use. For example, after about 4 hours at the zoo she starts to get really sore and is just done (even if she hasn't seen her favorite animals). Same with a fairly continuous hour of soccer playing or more active dance class.
The doctor says that over time ankle exercises will help and they have helped some (her "zoo stamina" has expanded by over 2 hours in the last few years). She also wears only good sneakers with lots of arch support, shoelaces and sturdy back of the ankle support to prevent the proration (or whatever it's called when the foot/arch rolls in), etc. The doctor said that we could always do orthotics, but due to the expense of that while she's still growing and because her is fairly minor except in the high activity situations, it's up to us/her based on her comfort needs/wants. When she's an adult and can buy over the counter it becomes a more reasonable option. Until then, it was suggested that just offering additional help on an as needed basis - slower pace, rest, stroller backup, etc - might be just as effective.
If you have any advice or personal experience, I'd love to hear it! I'd love to have other ideas of how to help her both improve and have a better quality of life (sounds so dramatic when I say it that way). Thanks!!
First up; no it does not sound dramatic. Some folks still have a wrong image that quality of life only is a subject for those battling terminal illness, but that is a wrong view. Each person on this globe strives, or at least wants to but might not know how to, for the best quality in their life. It's a very healthy thing to be aware of this subject. Dramatic would be drowning in it, you obviously aren't doing that.
Before I go any further, I need to say that I am hyper aware with these things. Also one of those things to keep in mind when reading posts.
Reason I asked further is because as I said I might recognize some things. I'm very torn if I should open my mouth or not realising that I could upset with possibly no reason but the other end of it could be it being very helpfull. Your daughters problems? Know them and they are part of my life as well, allthough by now my whole body is doing the same thing. Most people dealing with such problems will "just" have those darned problems. For some of us, there is an underlying cause in any of the many connective tissue disorders there are. Problem is that the medical community still knows very little if any about that and many of us will have had years, if not decades, before ever finding out they have a connective tissue disorder.
Again, I want to stress that I can't say anything about your DD's health. Odds are she falls in the "just" group. But something triggered me to still mention the small chance. If you ever find or have found her complaining about other problems with moving, pain, bruises etc; it might be something to look into. Not because it's a horrible black scenario but because knowledge is power and especially with these conditions.
That was also why I was asking "further". As it is very unknown, I've seen some parents of kids with such a condition describe their childs situation in a way like you did to keep it simple and understandable. Why ask? Because those of us where an underlying condition is the cause, there are more things to be aware of when looking into which aid to use. Some options can be too demanding. For instance giving too little or too much support in certain areas. Just like with her ankles need some help but not too much, it can be the same for other parts of the body when there is "more" going on.
As far as being more aimed towards her goes; when doing a rental look for what she can do with her feet. Can she rest them comfortably? Or would she have to fold her ankles into a painfull angle to get proper rest? When being so movable in a joint, she could unconciously go looking for a "relaxing feeling" by locking her feet into very weird positions. Like she'ld want to fold herself into a too small a place. That feels very comfy when doing it and as long as she's in that position, as the body gets a signal that it can finally relax the muscles that are working extra to do the work the ligaments should do. It is very difficult (if not impossible sometimes) to not do this when getting the chance. So it works better to not have any small corners, nooks and holes where she can wiggle a foot into.
Being able to put up her feet can be welcome if she's in pain, if she can put them up while being supported and relaxed is even better. Try to find out at home what she likes best. You might find she'll benefit from a small pillow under her ankles. If that's the case, it's not that huge of a deal to bring along a small pillow when the offset of it is less pain and/or tiredness.
Pacing is also a good trick. It prevents her from getting too much pain early in the day that she'll push through in the afternoon because she just wants to do that much wanted thing. Alternating between rest and moving always is a good thing with this. Hopefully it will also help her prevent those folding of the ankle moments when she just is too tired anklewise. Also if she's of the age where she gets aware of being "different" and wanting to do as much as she can, pacing can be an easier way to accept physical limitations as she can be mobile on those much desired moments and rest at moments where she finds walking isn't all that important.
But the best thing you could ever do, you are allready doing IMHO. You are very much aware of wanting to respect her physical limits but not baby her either and on top of that you take her and a baby to WDW. If that doesn't make you an Amazing Mother, I don't know what would.
And good for her on building up her strength!!!