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Dear Julie
From our experience, it is a huge plus to continue the boots at night, it is also very tough on the boys in the beginning, my recommendation/suggestion is not to give in to the routine. I would sugest to check that they are not hurting him, that he has a comfortable pair of cotton thick socks and that you use baby powder to make them more comfortable. Justin has worn these boots since he was about 6, he ison his second set now and these days does not complain about wearing them. He manages most nights to put them on himself.
Good luck, we feel this is a major contributor to his still being very active and mobile. It minimises the strain on the leg muscles resulting from toe walking and hence preserves them.
Colin
My son, Sam, who is now 7 had lots of trouble wearing his boots over the years. Make sure he has been stretched well, that the boots are not leaving any red spots and are as comfortable as possible. Sam wears tube socks, but I have also heard people mention using the soft lining that is used inside casts. It is a tube of fabric. You just cut the length you need and the toes are open. Many people have suggested that the boots be worn some during the day to get used to them at night. Another suggestion was to alternate legs at night so he at least had one on. What finally worked for us was incentive. I made a chart for Sam and after he wore his boots for 3 nights he could buy a new toy car. That gave him a great reward as well as some control. He did not have to wear them 3 nights in a row, just 3 nights. After he earned the 1st car he had to wear his boots for 5 nights to get the next one. I think all in all we did it 3 times and after that it became a habit and he didn't think too much about wearing his boots anymore. Good luck. It is well worth the effort to get him to wear them. You may have to get creative!
My sons Craigie and Marc also wear night boots. Craigie is 6 and I have been lucky enough with him that he did not give me a problem. Marc just turned 3 he on the other hand has been a battle from the beginning. ( they were both diagnosed in 2008). I also posted on another discussion but here is what I wrote for socks. You need wicking socks
Cotton is about the worst choice you could make. Cotton absorbs water like a sponge and then doesn’t let it evaporate. Wool is a better option, but like cotton it does not wick well. Wool blends and small fiber wool, like Smartwool designed for wicking and evaporating moisture, can be a good choice. Polypropylene is a better choice than cotton or wool, because polypropylene resists absorbing water. It is not as good of a choice as small fiber wool, because it’s water resistant material is so good, it may do a better job keeping water in the shoe than allowing it to wick out. A polypropylene blend can be a good choice, depending on the fiber it is blended with. Acrylic socks tend to wick moisture well and they do not swell much when wet. Cotton swells almost 10 times as much as acrylic when wet. The American Academy of Podiatric Sports Medicine recommends socks made with CoolMax. Coolmax fabrics use polyester fibers and are uniquely engineered with gradient fabrics to move moisture from your feet.
Hope this helps
Gina
Julie,
We were lucky and built a mostly one story house while I was pregnant with Sam. We do have a media/playroom upstairs, but all of our living space is on the first floor. (No basement since we live in Texas.) We have talked about waiting until Sam can no longer manage the stairs before we come up with a solution about the media room upstairs. We have a friend who used to work for an elevator company and could install an elevator for us for free. He has found elevators for sale online (Ebay) before and put them in his daughters' houses for attic access. I know people that have moified thier two story houses with elevators and such. I also know people that have moved when their boys were still on their feet. Basically I think it will come down to having a living space that can accomodate a wheelchair. I think the overriding factor is what will work for your family. I am sure that other people who are at a different stage can answer better from their personal experience.
Thank you, Colin. How old is your son? Brandon doesn't complain of pain, just not comfortable. I will try the baby powder on his legs. When he took them off this morning, his little feet and socks were wet from sweat. How do you handle this? I can't imagine what it will be like this summer. Also, Dr. Wong said that he could have a break one night a week. What are your thoughts. Thank you.
Colin McKenzie said:Dear Julie
From our experience, it is a huge plus to continue the boots at night, it is also very tough on the boys in the beginning, my recommendation/suggestion is not to give in to the routine. I would sugest to check that they are not hurting him, that he has a comfortable pair of cotton thick socks and that you use baby powder to make them more comfortable. Justin has worn these boots since he was about 6, he ison his second set now and these days does not complain about wearing them. He manages most nights to put them on himself.
Good luck, we feel this is a major contributor to his still being very active and mobile. It minimises the strain on the leg muscles resulting from toe walking and hence preserves them.
Colin
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