Range of Motion
Amy Barnett- I know...stretching is one of my not so good points...I hate to do it and especially since Lily just cries and cries BUT it is good for them....and I have noticed a HUGE difference in the last several months...just remember that it takes a while to stretch them out. When I first started stretching Lily I would do short sessions but more frequently now I can get away with 3 times a day of solid, really good stretching and then it is over with for a while. It is tough to do but being in a hot tub should certainly help. I LOVE to do it after Lily has had a bath...it makes it so much easier.
Another thing that helps with the legs is to use the Knee immobilizers. I put them on about half an hour before I am going to stretch her and it seems to warm her legs up and makes it easier to do it...I usually put them on, cover her with a blanket and get them all warmed up. Her legs are the worst part, her arms seem to be in good shaper EXCEPT for the wrists.
Brenda Brames- Crystal has a brace that fits her whole wrist, but is for her fingers. She has one finger on her left hand that stays curled. Her current, and awesome Occupational Therapist said it was because she keeps her fingers tensed up through the night while she sleeps. It is designed not to keep her fingers straight, to stretch the finger out, but to keep the fingers in the "relaxed" position, which would be like if you laid you arm down and relaxed your fingers and hand. That is the relaxed position for the hand and fingers, but at night Crystal keeps her hands and fingers balled up into a fist. Unfortunately, it wouldn't do anything for supination and pronation. If it is a contracture stopping him from being able to supinate, then the treatment for that (from what Crystal's Occupational Therapist says) is very painful. Crystal has the same problem, but only with both wrists. She can turn her hand completely around one way, but turning her palm up she can only go about half way. We decided that it wouldn't be worth the pain to bring this movement back, but we do range of motion with it daily to make sure it doesn't get any worse. We also do range of motion with all other areas that seem to be getting stiff, even her knees, hips and spine.
Stretching and even massaging techniques are best effective if you apply them several times throughout the day. This is all that I know to do for muscle and tendon tightness. But for contractures, I was once told to put them in a bath of hot water (not too hot to hurt or cause exhaustion), and do the stretching and massaging there for about a half an hour a couple of times a day. The heat of the water is supposed to help relax the joints.
For supination/pronation stretching I put my thumb on the bone just below her thumb in the palm of her hand and simply pull it outward. It seems that this spot helps move the whole hand at once and doesn't scrunch her hand or fingers. It is their job to teach you!! Something as important as stretching, needs to be done frequently everyday. Patty cake is Crystal's favorite way of doing this. Also, Every time I wipe her hands down, with the was cloth I pull her hand outward using that same pressure point. I was told that the contracture couldn't be corrected without causing her great pain and they advised me not to pursue it. But I still do the stretching to keep it from getting any worse. Stretching needs to be done several times throughout the day. Supination? Crystal has a joint contracture, between the ulna and radius, which is locked; she too can only supinated so far. I pull the bone in her hand that is directly below the thumb back every time I wash her hands and we also play patty cake several times a day which at the end when you say "Annnnnnd stick it in the pan" and really exaggerate the "and" and hold the stretch position. This puts excitement into the stretching activity. I used to do all her stretching at a certain time and all of them at the same time and considered it a have to thing because I didn't want my daughter to suffer the consequences from me not doing it. Even though she cried too, she just isn't old enough to understand the importance and I feel that is where we need to be strong for our child.
Splints yes are very effective for prevention. Crystal has them for her ankles to prevent plantar flexion and for her fingers to relax them while she sleeps to avoid contractures in the fingers. She gets real tight and stiff (muscle contractures) in the knees but frequent repositioning and of course ROM helps keep her loose.
Another thing that can be done is taking hot baths. Not too hot and not for too long, but just long enough to loosen the joints up and then apply the ROM stretching. People with arthritis also use hot tubs to loosen their joints. I guess I am just really concerned about any surgery for these children because they don't tolerate it very well. The recovery time is also harmful to them because they continue to atrophy due to being confined to a bed. I am a real strong believer in the stander and assistive walking techniques. And I don't care if Crystal will never walk, I just want to give her the opportunity to experience all she can even if she needs my help.
There are two types of contractures that I know of 1. Muscle and 2. Joint. Muscle contractures are where the muscle stays tense and locks into this position, but this may be able to be corrected by warm baths, stretching, and massaging. Joint contractures on the other hand are not as easy to correct. However, this is where the joint itself actually locks into position and no longer allows the movement of range of motion that it was designed to perform. This usually occurs from lack of use and lack of that range of motion.
Brenda- It becomes a bone contracture when it won't move anymore. MJ's contractures are permanent now, they are bony now....it sounds like the hips are bone since they aren't going further. MJ stood until she was 9, but was having more problems from the time she turned 7. She misses it sometimes, but not enough to want to do it again! After her spinal fusion we didn't pursue the issue any longer. Dr. Bach was impressed with MJ's knees, they are almost straight, thanks to Wyatt!!! He asked how long a day had I been stretching them, I said none, I hired someone to do it. He was confused until Lou asked, isn't that your dog!!! Bach thought it was great....he never thought of dogs for range of motion.....but it has worked wonders for MJ's knees since February!!!!
Kristal- About prevention excercises- as long as you are very aggressive they do work. But once the contractures start, they can't reverse the contractures- only slow down the contraction. We received his diagnosis when he was 1 year and 1 wk- and didn't get into see any specialists/ therapists until he was almost a year and a half old. So we unfortunately had all that lost time where we could have been doing the excercises. We have been doing ROM excercises twice a day for about a year- but I guess that isn't frequent enough- and our PT did tell us about them. Brett is a weak- midline type 2. He has never had any strength in his legs. We didn't start his stander or excercises until he was a year and a half old. All of this breaks down to- we lost a LOT of valuable time to prevent contractures because we spent 6 1/2 months trying to get a diagnosis. So for us- this is our only option because they have already started.............but only with the tendons behind his knees- he cannot straighten his legs all the way out. The only other contraction he has- is his supination muscles in his arms are weak and being overpowered by the other muscles but we have supination splints that we try to use but he HATES them.
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