My original goal was to coax Elena into wearing her night splints through the night for a period of four months, taking a picture each morning (ideally in the same outfit). We started on the 19th of February, after our Disney trip. The official end is tomorrow, June 12th.
Elena has tried very hard to wear her splints (one on each leg) as much as possible every night. The total wear time (assuming tonight's wear time is average) has been approximately 412 hours over 16 weeks (112 days, so average of just under four hours per night). This is through sickness (not wearing them, but getting oh-so-tight due to lack of movement/dehydration/etc.), health, seasonal changes, power outages, and a wedding.
I didn't get a picture every day. Some days I had to work early and Jason took some pictures (most were unusable b/c the angle was too strikingly different). Some days I forgot. Near the end, Elena would wake up early and be dressed for school before I had a chance to take a picture. These last two weeks Elena has been wearing her Dynasplint brace on one leg (nothing on the other) and alternating legs each night. With the Dynasplint, her wear time is longer, she can get out of bed by herself, and she has more freedom of movement b/c the brace can bend as she repositions herself in bed. She prefers the Dynasplint.
So--here you go, the Progression Vids:
PLEASE vote in the poll below, or leave a comment:
Here's my take on our trial.
Edit: A little background, in case you're new to this blog: Elena has had three bouts of Botox, ages 2-3 (1st round lasted 6 months; 2nd round 3 months; third round, 2 weeks); SDR at age 4; PERCS (hamstrings) and traditional lengthening (calves) later age 4. She is currently 8 years old. She gets several different types of therapy every week and is an active child. There isn't a whole lot of interventions left for her. Elena has dynamic tone, which means it kicks in most when she is active. While E is "at rest", she has very decent range of motion. In the past E's team mentioned that she could benefit from prolonged stretching. Because she is so active, the best time to do so was at night. This was out of the question earlier in her life, as she had serious nighttime issues--for close to 3 years, she cried and screamed for an average of 3 hours per night. Once that was under control, everyone (including Elena) decided we could try a nighttime stretching regimen to see if there would be any benefit. E's orthopaedic doctor does not recommend nighttime bracing; he says the literature does not support that there is a prolonged benefit. My research backed him up; the net gain of nighttime stretching, a minimum of 2 hours per night for a minimum of two weeks only lasted a few weeks before returning to baseline contracture in Elena's diagnosis and age range (any growing SDCP kid, basically)--the research out there on this is pretty scarce (most kids won't tolerate it, and the sample population is already very low for a statistically sound experiment). I could NOT believe that night bracing could NOT HELP someone like Elena. I figured any increase of range in motion would be good for her, if she could tolerate the stretching regimen.
I do see a difference. I see a significant difference in her ability to stand taller and straighter than before the trial started. I believe this is an objective observation.
As far as the big question--does this ability to stand taller and straighter--a static, supported stand--impact how she generally moves--well, I think the answer is maybe, but not much.
I do think that when she thinks about standing upright and tall, she has better range. This has to be a conscious act for her. I do think she has improved her ease of movement, but that could be for many reasons--increased confidence, steady mobility gains, continued varied activities (biking, outdoors, soccer, catching, carrying, steps, better speed, etc.) and I would not attribute this to night bracing. I also think she is slightly easier to stretch at night (we do a series of stretches and exercises every night), provided she is cooperative (which she usually is).
She has also hardly slept through the night for 16 weeks. She would call for me nearly every night to come and remove the brace(s)--not fully awake, but obviously not the best sleeping arrangement. She did not seem to "get used" to wearing the braces for longer periods of time during this trial--meaning, there was not a steady increase in her hours tolerating the braces.
My opinion? Right now, I feel like this is a meager payoff for the effort we've made. I am perplexed that my supposition above--"--that night bracing could NOT HELP someone like Elena" after this trial is ambiguous. I am happy we've tried it. Elena tolerates her Dynasplint well now, which I think is a superior stretching brace that I hope to use with her for many years to come. She has also mentioned that she feels different (better/looser) after wearing her night braces. My guess is she would feel just fine if we had a nice warm massage/stretch in the morning, regardless of bracing during the night.
Now, I don't know what her movement would look like if she had been allowed to curl up at night for the past 16 weeks. But we're going to find out, b/c we're taking the summer off night bracing--unless Elena asks for it (which she might).
