Fatigue
Brenda Brames- I have done a lot of experimenting personally with Crystal on the fatigue issue and I then began having a conflict with her old therapists because they were overly concerned with fatigue. They were not willing to see how much Crystal could handle and they would blame every episode of weakness that Crystal would have on fatigue. They were both very narrow minded. They told me the same information over and over as though I was stupid and couldn’t retain the information. I always thought in my head, “Okay, I got it. Next topic.” But never the less I have got Crystal on a consistent schedule within her limitations. Of course, you would have to find out what your child’s limitations are. Also, when I am working with her I always let her be my guide. If I know that she is well entertained and not just bored and she tells me she wants to stop, then I honor her wishes always and this has been real effective because she knows best of how she feels and when she is getting tired and it is best that SMA children do not over exert themselves. The reason I know this is because I have seen it in Crystal. When I used to try and push and encourage her to do more, she would become exhausted and fatigued. And it is not that being fatigued is detrimental to their health, but that it will leave them even more weak and unable to function up to their norm. So they don’t have any wasted time just laying around not being productive you want to avoid fatigue always. Consistency is always best with many issues involving these children. As far as things that you would be in control of making sure to avoid fatiguing your child, there are a couple of things that are important: 1.) Make sure that he has a consistent sleeping schedule. For nap and bedtime the same time (or close to it) everyday and make sure you allow him to receive as much sleep as he needs. Avoid situations where you are waking him up. Let him sleep until he is done. If our children do not receive a good sleep schedule then they can stay fatigued for as long as two days after they get back on track with their sleep. I have seen this in Crystal every time I dare to stere away from her schedule she has problem with fatigue and with her it would take her two days to recuperate. 2.) Avoid heat. In the tub and outside. They both can drain your child of energy and leave him fatigued again for as long as two days. I follow the rules for outside that anything between 55º and 80º Crystal has no limitations on how much time she spends outside. 80º to 90º I only allow her to be out for 15 minutes at a time maybe once an hour maximum. But definitely anything higher than that, then she stays inside. And as far as the bath tub I do not limit her time, I just decrease the heat of the water instead. She has grown accustomed to taking leuk warm baths. I even prepare the water in her horse’s troft at a leuk warm temperature. The amount of fatigue acquired from too much therapy has shown in Crystal to be only a few hours though. Often I will put her in her horse’s troft a couple of hours before bed and just let her have at it, until she is done. Yes, I see her fatigued when I get her out but I also see in the morning when she wakes up that she is fine, and ready to go for some more. This is also why I rotate her activities throughout the day to different muscle groups, to allow adequate time for her muscles to rest until she works them again. Often while I am assisting her with walking she will ask to sit on my lap and then want to get back up only 2 minutes later. So even though it can be annoying, I allow her to get up and sit down as much as she wants and have found that as long as I follow her lead, she avoids fatigue.