Tuesday, February 19, 2013

Our New Nightmare

Okay, nightmare might be a little extreme...but that's kind of what I am anticipating.

Elena had a checkup with her orthotist today.  She's still tight from decreased movement from being sick; but there is no denying that her legs are very tight--her hamstrings and gastrocs especially.  This is not a big surprise...she has grown quite a bit, and her spasticity has increased (marginally, I think, but compounded with growth it is easily noticeable).

Surgery isn't really a consideration right now.  Her contractures are small enough not to warrant intervention.  But, if we want to try to help Elena move better, she needs prolonged stretching.

She is doing well in school, and is an active child.  The only logical time for a prolonged stretch is at night, while she sleeps.

The good news is we can have night splints made for this.  We had some options to start this a few years ago, but Elena's nighttime difficulties and terrible "sleeping" habits made this near impossible.  Thanks to our wonderful family psychologist, E now goes to sleep very well, and I was (am) hesitant to interfere with our new bedtime routine.

So, I'm stuck between a rock and a hard place.  No one wants to make E sleep with cages on her legs.  I feel like she thinks it's some kind of punishment...and we're only trying to help.  And I cannot imagine that stretching for 8 hours nightly won't make a difference.

Elena was present while we all talked about options.  She was upset--I was too.  She also understands on some level, that her tightness is a problem, and there is a non-surgical option that we want her to try. It's unfair for someone so young to have to process this, no doubt.  It's also never going to change--unless, maybe, prolonged stretching makes a difference.  I think it is worth a try.

I want Elena to weigh in as much as possible in the sleep stretching plan.  My idea is to slowly transition (hours per night, type of brace) from zero to (hopefully) 8+ hours of wearing her splints nightly, for a test period of 3-4 months.  I want to take pictures every morning and see if, and when, any changes are observed.  And then share them here.

If you've already tried this, I'd love any information you have to share.


nicole portwood said...

We havent done night splints but just started knee immoblizers at night. Only doing 1 leg at a time because i cant seeing how she would sleep with both. She turns alot at night and even with one on its hard for her to move. We have only been doing it a few weeks and not very regularly. But i can tell a difference in the morning which leg the brace is on. With it them she sleeps with her legs pulled up/bent, so getting dress is difficult. Good luck and cant wait to see how it helps.

K said...

Hello! I have spastic diplegia too, VERY similar to Elena's! When I was a few years younger than Elena, I had to get night splints as well. I hated braces and also had sleep troubles, so my parents were worried about that too. I can relate to E! What kind is she getting? Mine were plastic and were connected with a bar. If you can get some that aren't connected, that might be easier, because I hated how I was forced to sleep on my back when I wore my splints. I'm not sure how long I wore them for, but they definitely made a difference! One tip that might help: my dad would usually let me fall asleep without them, and then once I was asleep, he would put them on. Sometimes I would wake up a little while he was putting them on, but I was so sleepy that I didn't care. ;) Also, I recall a few nights when I would take them off in my sleep (sometimes subconsciously!) but that never made a difference in the overall outcome. I wouldn't say that I wore them consistently (I definitely skipped a few nights here and there, or took them off after a few hours) but even so, they definitely made an impact. I would give it a try! Good luck...I understand that it's tough. I've been there too.

Amy said...

Well, I am curiously watching this. We have been trying to avoid surgery for Emma's tight hamstrings as well. I will be keeping a close eye on how the prolonged night stretching and bracing works, as we have considered this for Emma too. For Emma, surgery is out of the question for us right now. this seems like a viable option though. I will be looking for the updates.

Anonymous said...



Anonymous said...

Hi Amy and Elena

I have Hemiplegia, I know what e is going through with the leg braces I am getting supper dupper tight lately also my mom and dad are looking into SDR for me with Dr. Park. I know e had one too how did hers go? do you recommend the surgery?

Anonymous said...

I had to wear my regular AFO's at night after my surgery when I was 6. I was young so I don't remember if they made a difference. I HATED WEARING THE BRACES!! They would fall off as I rolled around in bed so it was just awful. I quit wearing them. If E is getting the ones that are built for night use that might be better but she will probably hate the clunky weight of them. If I had to choose surgery or night braces I'd choose night braces. I sleep with a pillow between my legs now and that does make a difference. Maybe you should try putting a pillow between her legs at night before trying the braces??

Lori said...

124Hi, my son is eight and has spastic diplegia. He is ambulatory but his gait is typical of kids who have spastic diplegia with crouched gait, knees turned inward and scissoring, walking on toes and right foot turns inward more than left. He has tight hamstrings, adductors and gastrocs. His favorite sleep position is on his side curled into the fetal position...exactly the opposite of what every PT and rehab doctor want. One orthotist who is also a PT who also adopted a child with CP who is now 30, recommended the night splints. They are made of neoprene with a lot of velcro straps and one section is sturdy for the length of the splint for support. We alternated legs and gave him a night off. If he woke up and complained, we took it off. Making the room cooler works too so his leg didn't get too hot. He likes his pillow flipped to a cool side so wearing a hot neoprene splint with velcro was worrisome. Good luck. We recently were advised after a gait analysis, that he was a candidate for SDR or SEMLs, the traditional orthopedic surgery or both staged with SDR at age 7 and SEML at age 10 for contracture. We opted for SPML or Selective Percutaneous Myofascial Lengthening with Dr. Yngve in Texas at UTMB Galveston. It is only 5 days post op and we are home now after a long flight yesterday but the ROM gains are already amazing. He is casted in short casts for four weeks. He can take some steps in his walker for about 15 or so steps. Not happy with the casts but we think in the long term it will help him. He has to wear knee splints for a month to keep his legs straighter during the nights. We might then go back to the splints every night alternating legs with a night off. Wish you all the best.