Tuesday, June 11, 2013

Night Bracing Summary

There is a lot I'd like to do with the videos below (correct for picture angle, shadows, etc.) but in the spirit of getting this posted promptly, here is the raw cut of the night bracing progression.

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).


Anonymous said...

A good night's sleep is so very important (Google "importance of sleep" for a flood of info) that I would be loathe to continue something that interrupts Elena's sleep most nights. As someone who has suffered from extended periods of nightly sleep interruption and the inability to sleep deeply and comfortably, I can tell you that you may look like you are continuing to function fine, but it takes its toll on concentration, mood, learning, and health. Even if she insists on continued bracing, I would insist on a break and have her compare how she feels now with how she feels in a few weeks when she is back to better sleep at nights.

Kristine said...

I felt like I saw a pretty big difference, but I voted for the second one which was small but significant. I felt somewhere between the top two. I do see what you're saying about a meager results for the effort spent, though. I felt like the most dramatic improvements happened early on but stayed pretty steady.

Catherine Ciara's mom said...

On some it looked like a huge difference, from day to day, as I want it to be, (sorry I'm not objective about such a sweetie)but maybe that was when she thought about, or responded to 'stand up tall". I'll share with some (adult care) P.T.s I know who might be more objective?

Anonymous said...



Anonymous said...

I've been through night bracing before similar to Elena's (I also have SDCP), and to be honest, got pretty much the same results. I couldn't tolerate the knee immobilizers, and many times I would wake up during the night and take them off without even realizing it, so that in the morning they were halfway across the room. I didn't see any sort of significant difference until after I had hamstring lengthening at 15- I hadn't realized how tight I was until the surgery relieved some of the spasticity, and then I was able to tolerate the night splints much better. My point is, you have to be loose enough to tolerate the night splints- to be braceable, if that makes sense, because otherwise they'll just be uncomfortable and won't work. Maybe stretching right before bed would help? In my case, only Botox or surgery really provided any significant relief to the point where night braces were useful to maintain the effects.

Margot said...

I saw some improvement from the back view but from the side view it looked the same as before. If you're having success with the DynaSplint stick to that since like you say it allows her knee to move. From my experience whenever a joint is immobilized it creates more spasms, not less.

Patty said...

I give you both so much credit for sticking to it. I could never get through it with my daughter. Having her not sleep and me not sleep, was a disaster, but it is so important. I saw a slight difference with her heels seeming to be more consistently down and to the floor by the end.

My daughter, 8, has done this intensive therapy called Adeli every summer the last few years for 6 weeks, two hours a day. At the end of the last one she took about 30 independent steps. Slow, CP steps, but beautiful. Now though, 12 months later, with growth and botox and life, she can't take more than two. Its just so constant with such small gains. I feel for you.

Anonymous said...

Loved reading your blog. With regards to orthopaedic surgery, Adductor lengthening is known to have lots of benefits, lengthening the adductor longus, the adductor GRACILIS, and sometimes the brevis, with key hole surgery can help, the muscles of the inner thigh, muscles of the groin. It can interfere with growth spurts but has been successful in teenagers aged 16 or 17 in some case studies I have read, I think the hospital for Special Surgery in New York in Manhatten does these procedures, and children's hospital in Delaware. I had this done as 22 year old adult with diplegia, changed my life.

Margot said...

Me again, is there any possibility you can have DynaSplints for each leg each night? Might help to have the splint on both legs since whatever leg is not being splinted probably just tightens up.

btw I had my adductors done. Certainly helped but my knees still turn in. Adductor surgery only helps with the upper half of the legs I think.