Kenya Birkle- My PT told me that he doesn’t need to stand. I know other wise. It helps with so many things, respiratory, weight bearing, bowel movements, and digestion. I am getting a stander through the FSMA because I cant get my PT to understand that he can do it even though he has contractors. A PT in Louisiana emailed me and she has a type 2 daughter and she was telling me all the good things about standing and that in order to fix the contractors our kids would need 6 hours a day of good stretching. Our goal is not to fix them but make them a bit better and not any worse. Standing also helps to get the contractors out. It will be a big improvement with lots of stretching but to fix the contractors it would take that much. I know there are kids on here that have bad contractors, I mean really bad but they still use a stander. Aschdon has them in his hips and knees as well and they are pretty bad. However, with the help of the arm sling we are making great progress with his hip ones. I would love to share on some stretching ideas if you would like. I am not very good at stretching a lot so I have equipment type stuff that does it for me. Sorry if this doesn’t make sense. I just know from even talking to Adam Craner and Dr. Swoboda it can be done with contractures as the stander is adjustable.

Jeni- Actually, the ortho said that with the amount of contraction Annah has in her knees and hips it would be extremely painful for her and border on dangerous. I can see his point because her right knee got almost to 90 degrees again over the one week that it wasn’t stretched much at my mom's. We're working it back out and it's back to about 45 degrees now, but I really think that unless we can get some major improvement in her knees and hips that it would be really hard on her. It will happen eventually, and I don't think it will take 6 hours a day. In just 3 or 4 good stretching sessions a day (about 15 minutes each) we've made a 50% improvement. Her hips will be harder, but the hot tub will really help. One day at a time......

Brenda- MJ stood for years with pretty bad contractures in her knees and hips. 
You can just set the stander to adjust to the adding
padding behind the knees, etc.  When Emma was alive, it was the only way we
could get her regular.  She had a BM
every time she stood.  It never failed. MJ quit standing right before her surgery.  It was getting too hard
to get her up standing
because they didn't have these cool standers back then. 
We had a homemade one that didn't support her really well, so her hips
dislocated whenever she stood.

Kristal- Standing is very important! It promotes good bone development, lung development and helps with bowel movements. Depending on the degree of her contractures, it could be painful for her though. We are VERY big on the stander! If you do the stander, I recommend short sessions. We try to do 3-5, 30-minute sessions a day. We used to do 2 1-2 hour sessions but he would not want to get out because it hurt too bad, and imagine your legs locked in place for 1-2 hours- it does hurt. So to make it more realistic- we have switched to this and Brett loves it much better!

Brenda Brames- I see in Crystal that she is so weak that she was losing her arch, curling her toes and her ankles were everting. I believe that it causes her great pain if she was to stand without braces, and I do not allow her to do this. I don’t even allow her to stand in her “MDA rejects”, because they don’t properly support her ankle, arch or toes. Basically, Crystal wears her “MDA rejects” as shoes all throughout the day, and if she is having problems with plantar flexion, then even at night. When she does any standing or assistive walking I change her into her SMOs, which is what her other braces are actually called. We went Tuesday to have her fitted for some DAFOs, which are basically the same as SMOs, but go half way up the calf and are supposed to help with preventing plantar flexion as well. It is important to stretch and massage the knees, because even though your child may not use their legs contractures are painful and very uncomfortable. In addition, many of us are still praying for a cure and we want to save as many of our child’s abilities as possible because the likelihood that any progress will be made on correcting any damage that is already done is very little.

One way to deal with avoiding contractures is not just the stretching, but also keeping each joint active in different positions.  I know that for someone who is wheelchair bound that may not be possible, but could it work to make an adaptation to the wheelchair, even if it is homemade, to offer different positions for the legs at least.  I can't think of one for the hips, but when Crystal broke her leg, the rehab center made a leg rest for her to rest her half cast on.  How about something like that.

Even though Crystal spends very little time in her chair because she does sooo many standing type activities, when she is even on the floor, I do not allow her to sit frog legged because that is my way to keep her legs from staying in the same position.  She ALWAYS goes back to the frog leg sitting and I always tell her to straighten her legs out.  Wallah!!!  They keep moving.  I still stretch her, but because she is still so little, I can do it without her even knowing it, like when she sits on my lap often I put her on her knees and gradually have her sitting on her butt and then I chase her for a kiss while she lays back while on her knees.  Even in the water, she really stretches her own self out.

I have been working with Crystal's standing and walking since before her diagnosis. There are some things that you can do without the medical equipment: When I started, I just placed Crystal in the standing position and with her back up against me and I wrapped my arms around her knees so she couldn't bend them. Her butt couldn't bend either because I was right behind her. The very first time I did this with her she lasted 2 whole minutes. That scared me. I was worried I was hurting her. But I stuck with it. I always let her down after she started crying, but I also included talking and play to help distract her. As she got bigger I began placing her facing her play table and I held her knees with my hands while stretching my thumbs up to her butt to stop it from going back. That was even better because Mom knows her favorite activities and she would play while standing. Now, she can stand up to 30 minutes with me giving her hips stability and 10-15 minutes all by herself. She also has a gazelle stander that she stands in 3 times a day for an hour. She has the gait trainer, but right now all she can do is scoot backwards in it. She also started out in the beginning riding that school bus, She could only go backwards and I often had to reposition her legs and feet for her. You just got to let them do whatever they can do, as little as it may be. That is the only way you are going to bring them legs to life. Crystal too has the strong desire to walk and that is what I thrive on. You can even assist them to take steps by holding their pelvic: Forefingers supporting the tummy, and thumbs giving the legs a little bit of a boost up and forward. Try to feel them making an effort and let his legs do as much as they can. ALWAYS STOP WHEN THEY SAY TO. Fatigue is one thing you always want to draw caution to.  

Why is it that since a child can’t walk therapists doesn’t feel it necessary to work with their legs? It is beyond my logical thinking. The less activity going to a muscle group, the weaker they are going to get. The arms and trunk are so easy to work because they do not require one on one attention all the time in staying active. But the legs on the other hand, having activities that require stability and support that there are so few activities that they can do (alone that it). What I do with Crystal is place the her in the proper position to do the activity and let her do as much of it as her muscles will allow and then I pick up the slack. Example: Walking-When I first started walking with Crystal, I was doing actually most of the work. I continued to do it any way just to teach her the proper procedures (right, left, right, left…). I held her pelvic girdle and supported her tummy with my forefinger and with my thumbs I would actually push her legs up and thrust them forward. Everything I did was slow allowing her to contribute as much as she could. Once she got the procedures down, I could feel her beginning to assist me in moving her legs. She could drag her foot if I lifted it some. As time went on she realized that if she leaned her trunk to the left, this would lift her right foot up some and then she could move her foot forward all on her own. I continued to support her trunk and hold her upright but she began to advance her legs forward all on her own. It has taken a long time, but currently she doesn’t lean her trunk as much and is able to actually lift her foot slightly while advancing it forward. Coming to a sitting position-Often Crystal used to fall and lay down. We always kept a pillow behind her for this. I took advantage of every fall by not picking her up by myself. I only put forth enough effort for her to be able to do it herself. If they believe they can do it then they will. If they don’t believe they can do it then they won’t even try. Always set your goals high for your child, but let the goal always include “With assistance as needed”. The excitement I see in Crystal’s eyes when she can complete tasks-with help or without help, doesn’t matter to Crystal-is simply irreplaceable and I would not change what I do for her for a million dollars, because I have seen the results of it.

I do all kinds of standing exercises with Crystal. She has sublexed hips, partially dislocated, but the dislocation is not complete. I was not told to stop standing or walking her. Her legs are not curled either. During her stay at the hospital for her last pneumonia episode, they had to put the IV in her ankle and her legs seemed to get locked in the curled position. They also got locked in the stretched out, and straight position too. I would massage the legs and do stretching, which helped but she really needed to get up on her feet. I explained to the doctor what was happening and since she had been on the IV for two days, she should be hydrated enough to get a stick in the hand like they usually do. He said okay. It was done and I began her weight bearing and the problem then seemed to be over.

I believe that a cure is right around the corner and want to prevent, as much muscle wasting as possible and stop contractures, because the cure is not going to be able to fix this kind of damage. I know and understand that Crystal will never be able to walk, but I want her to always be able to do what ever she can, even if she can’t do it by herself, I will always be there to assist her.

As far as standing goes, you must understand that especially in a stander, this is not a leg muscle strengthening activity. The best benefit of this exercise is in the perfectly straight upright position, as in the body being straight legs and all. To accomplish this in children with such hypotonia, the knee joint and buttocks must be locked or strapped into position. Therefore, it is not muscles that keep them standing; it is the bone structure, the frame of their own body. For bones and joints, this procedure should be practiced religiously. I learned of different types of bone and muscle "development". That of the "thigh" bone or femur and that of the hip joint are of the type that requires weight bearing on them for them to develop properly. Many children with hypotonia suffer from what is actually called hip subluxation, where the hip socket has not been developed all the way to hold the ball into place; therefore, the ball tends to slide out. It is a slow process before the dislocation is actually complete. Crystal's orthopedist says that Crystal will be past the point of being able to do any standing or assistive walking before this happens and when it does since she won't put pressure on the hip, then the dislocation will not cause her any discomfort.

Charlotte-Magnus, type 1/2 has a stander, and it is his favorite place to be (he uses one from the company R82 called marabu or something like it)! It helps with bowel movements, allows him a sense of 'standing' on his feet, etc. We have special arm slings that a grandfather has made here and he can play so well for an hour or two when he is doing well. I will soon send a picture of them
-- they have a weight attached so he can both move arms to the sides and up/down. A life savior here.

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