Anonymous Mom- My son took a fall a little over a year ago when he was 5 years old and broke the femur (not all the way through) just above his knee. Instead of casting him, the orthopedic surgeon (who has a pretty good understanding of the issues in SMA and knew my son) made a 'half-cast'. Solid back and sides, then we strapped it on with tensor bandages. He gave permission for this to be off during my son's daily (1 hour) water therapy. It gave him plenty of comfort and support during the healing process (6 weeks) and the break hasn't impaired his long term abilities at all. He did not, of course, stand for the six weeks. There is still a bend in the bone where the break was - perhaps 20+ degrees, but it doesn't impair his function at all. You wouldn't even notice it. This sort of break and treatment strategy was discussed a bit at the 2001 FSMA conference, during the Orthopedics workshop I think, so I was sort of familiar with it.

Brenda Brames- I am talking about a buckle fracture on the distal end of the femur (bottom of the thigh bone). ER wanted to cast her that night. I said, "NO!" I requested that the orthopaedic surgeon make that call and they compromised by putting a half-cast on until the next day when the ortho could see her. By a half-cast I mean, the back of her leg was casted and then an ace bandage was used to hold the cast on. That way I could remove it for as much therapy as the doctor would allow.

Ortho Dr. approved the half cast and agreed Crystal could have as much water therapy as she wanted or could tolerate. But said absolutely no weight bearing of any kind. Incidentally, I learned over this matter that water therapy, even standing in the water, is considered a non weight bearing therapy.

Two days later Crystal's PT came for a visit just to check up on her and her ROM and such, he is no longer her PT but I trust him more than anyway. Anyhow, he commented that the cast was generic and causing her problems like 2 pressure soars, one of which was pretty bad at her heel and the other at the top of the thigh in back. He also stated that the casting was impinging on her sciatic nerve putting her at further risk. He showed me how lumpy the cast was inside and to think that ER actually expected any child to be able to be comfortable in that thing was beyond me. I took the cast off and never put it back on. I went to Ortho first thing that next morning and asked to see Dr. Receptionist said he wasn't in today and there was nothing that could be done. I explained the situation about the broken femur, the generic cast and pressure soars and the sciatic nerve and stressed that she just couldn't go without a cast and she kept nodding her head saying, "I understand" What a pain and this is coming from a facility with 15 other orthopaedic surgeons. She made a call, "Sorry, there is nothing I can do." I stressed again the issues. She made another call, "Sorry, there is nothing I can do. Finally I said, "Who is going to take responsibility if my child is turned away and then further injury is caused because you wouldn't take the appropriate steps to see that her needs were properly met?" She said, "Well, let me page Dr.'s nurse and see what she says." We had to wait a while but finally she said came out to the lobby and said another Dr. was going to see her. Duh? Now why was that so hard.

Dr. agreed with PT and wrote a script for Crystal to go to Prorehab to get a splint made. Again, only covering the back of the leg and this time that added velcro and straps to keep the splint on. I was right there when they made it. They warmed up the material and sized it to her leg. But after adding the padding and straps I showed them how her leg wasn't fitting into the splint. Somehow the splint had shrunk some in the cooling process, but it was clear how her fat of her leg was hanging and being pushed on the edge of the splint. I said something then and there and she pulled and tugged to widen it and then placed it back on. I still wasn't happy but since I had pointed that out to her I figured her being the expert would not put it on if it wasn't correct. Also I had pointed out her pressure soar on her heel and asked something be done about that and she said the only thing she could do is put a pad there to cushion it. I asked for that spot to be cut out instead because even a pad is going to limit its healing. She said that was the only thing that could be done. I left it alone.

Crystal never stopped complaining about this splint. She had gone 2 days without complaining about pain and now she was crying again. I carefully examined the splint each time I put it back on and it took me a day, but finally I found a few things that were really bothering her: What I had a problem with is that I could keep her ankle in the neutral position. I would put her heel all the way back into the splint but after wearing it for a little bit her toes would end up pointing and her ankle not where it needed to be. But also it was aggravating her pressure soar on her heel and I finally noticed that her knees were resting on the edge of the splint not even being able to go into the splint at all. I called ProRehab and they got us in at 7 am that next morning. Finally someone who knew what they were doing. This splint is much better: It is wider, and they bubbled out the heel so her heel won't touch anything at all and the straps were placed on differently so it keeps the leg in place without having to strap down too tight. Thank goodness.

Another thing that the "On-call" ortho said was that she didn't have to wear the splint at bed-time. Another important note that Crystal's ortho had said was that the fracture site would heal on its own. Our main concern is that the whole leg doesn't get bumped or put at risk to making the site worse. So I made the decision, with the help of Crystal's NEW HOME HEALTH AIDES, to only use the splint when she is at school and day care. The rest of the time she has got "one on one" attention and can make sure no further injuries happen.

Although I wouldn't dare even attempt this if Crystal didn't have the constant attention that she has but it is working out very well for her in many ways. Most important is the continued ability to exercise constant ROM (range of motion). She gets tight and stiff so quick, I mean in a matter of a few days, that we always all through out the day, have routines for her to keep these abilities alive. She is getting tight again in the ankles, but only slightly, but her knees are doing real well. I also haven't seen any problems with her hips.

She is not complaining of anymore pain. And little by little she is standing taller in her "horse's troft" while swimming. She protected her leg for a while not standing on it at all, but now she is almost participating in all of her usual stunts in the troft.

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