My son has recently started wearing night braces to keep his heel cords stretched. He is six years old and was so excited about wearing his batman boots each night. Well after 3 short weeks....the excitement is over. Now what do we do???? I'm beginning to dread bedtime. Any suggestions???? Thank you.

Julie Hathaway

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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
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
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!
Wonderful ideas! Thank you. We use the lining that is used inside casts. His feet just get so hot. I'm thinking that his body termperature will adjust after awhile. We keep telling him that his sister wears glasses to see, his granddaddy wears his mask for sleep apnea and that he wears his boots to keep his legs strong. That seemed to work for a week. We also pray and ask God to help him get adjusted. I've thought about incentives, but haven't gone forward, but think I will. Thank you..... I have another question off topic.....Has anyone mentioned to you about living in a one story house opposed to a two story home?????? We wondering if we should consider moving????

Stefanie Killian said:
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
Thank you, Gina. Where do you find these socks? Do you special order them? If so, please tell me where I can get them. Thank you so much. We, too, were diagnosed in 2008 (October 22). Are your boys on steroids? How are they doing? Do you see Dr. Wong in Ohio? Thanks a million.

Gina Manning said:
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, Stefanie. Brandon does great with steps. I just worry about the damage it may be doing to his muscles.
Stefanie Killian said:
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.
Hi Julie,
You are welcome. I have found the socks in Target and Walmart. The boys are doing OK thanks for asking how about you. My boys were diagnosed Craigie Feb. 6 (oh my goodness it is almost a year) and Marc Sept. 19th). We are going to see Dr. Wong for the first time on Feb 17-19. Good luck with the socks and of Brandon wearing his boots.
Gina
Wherever you get your boots made, they can drill air holes into the back of the boots. We have Joshua wear girls dress socks under them or just pull his pajama pants down to his heels. His feet don't get sweaty because of the air holes no matter what he has on under them. It might make his feet less sweaty. Joshua has never had a problem with sweaty feet since the air holes have been drilled. We did it with his first pair and have ever since with each boot since. It's worth a try.

Naomi
Julie

Justin is 8 and almost 6 months, we use a number of different socks, a pair of my cotton tennis socks, a pair of in flight socks and a pair of school socks. One of the therapists said that ballerinas use a lambs wool lining in their ballet shoes, for comfort and sweat, we have not tried this yet.

Joshua our second little boy with DMD will make an appointment for his boots this month, he is 4 and 7 months and starts physio this week. He is not on steroids yet, we will discuss this with the Professor tomorrow. Justin has had steroids for the past 2 and a half years and is still on the recommended daily dose with calcium and Vitamin D.

One night a week is good to have off, it normally is a reward fro good physio or good self stretching. It may also jus tbe because, these are specila so it isnt always linked to something like it is a punishment.

All I can say is keep it up, I thought also of drilling holes into the boot so as to allow ventilation and stil maintain the strength of the shape, something like the holse in an Ice Hockey hemet.

Keep going, it will not take much longer than a few weeks to become a habit, also explaining that you know it is not a punishment, it is because you care and love him, I have included a photo of Justin in his boots to show him as one of his friends from Africa.

Colin

Julie Hathaway said:
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
Attachments:
Hi,
Craigie's boots have holes drilled into the sides we asked if they could drill them into the bottom they said no that it would weaken the boot. The holes on the side did not work for him. His feet sweat alot. We are always changing his socks during the day because they are cotton. When we made the change to wicking socks at night they are barely wet.
Gina

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