hi there all, my son austin is 10.5, we are struggling here in vermont, we have medicaid for the boys and they are making it very hard to find a PT that takes medicaid . we have located a very nice pt office and have gone in twice, however, im not sure she is doing the right stuff with austin. she seems to understand the stretching, but had asked austin to do sit-ups as well. when i aksed why she said it was good for his blood flow and good to keep all of his muscles working. im fairly sure this is not a good practice, but id like to know what other opinions are. also the man that saw him last week had him pedaling a bike ( no resistance) but austin gets tired, so generally we dont do exercise as he gets enough just moving around. any advice appreciated

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Please know that at no time should our boys do any sit ups or any pedaling as exercise. Usually PTs are not trained with knowledge of DMD boys. My son, Nicolas, sees Dr. Wong, and they suggested we stop going to PT altogether, and only go to have his range checked 3 to 4 times a year. I also know that are kids are kids, and will still play, but to have them get "tired" as he was doing while pedalling is detrimental to his muscles. Never should a PT tire Austin out.

In my opinion, and in my doctor's, the only thing a PT is good for is to check their range of motion and perform stretches.

Michelle
i too take my boys to doctor wong, and was given a sheet of stretches for the pt to do, austin has contractures in his heel chords,and is tight many other places. my issue is that i want a pt to do the stretching, but i want them to listen to me when i tell them what i want them to do. unfortunately i have limited choices on who to use for pt because so few take medicaid.

Michelle Gonzales said:
Please know that at no time should our boys do any sit ups or any pedaling as exercise. Usually PTs are not trained with knowledge of DMD boys. My son, Nicolas, sees Dr. Wong, and they suggested we stop going to PT altogether, and only go to have his range checked 3 to 4 times a year. I also know that are kids are kids, and will still play, but to have them get "tired" as he was doing while pedalling is detrimental to his muscles. Never should a PT tire Austin out.

In my opinion, and in my doctor's, the only thing a PT is good for is to check their range of motion and perform stretches.

Michelle
In our experience, Jon has only had PT approved for a certain number of sessions and that was to develop a home program and teach him and us how to carry it out. Once that was accomplished we were on our own to keep up the routine. Then every 6 months when he goes for his check-ups the PTs check his range and check on how we are doing and offer any suggestions or changes. We also get some PT/OT through the state, California Children's Services, but that is pretty much just yearly evaluations. They are very helpful with the schools, IEPs, questions about equipment and so forth. We have private insurance and don't qualify for any assistance from the state so I don't even now how medicaid works.

Of course my son is 18 and at a stage where he will not do any stretching or wear his night splints to bed. He is pretty stubborn.

Susan
If you are on Medicaid they should offer Medipass. My son was on Staywell and they would only give him so many visits. He was going once and week and his doctor wanted him going twice a week. But when he got switched to Medipass he now has unlimited visits.
Kelvin's doctors have never recommended PT. We do his massaging, stretching, night braces, hand brace, etc. so they don't feel that we should do any more than what we are, as we are doing what is needed. They are helping by doing some of the same stretches at school, which Kelvin's doctors say is good, once, twice, three times a day is ok, as they are only a stretch and hold. Michelle
Jenn... you can point your PT to this page where I organized a bunch of links on PT (PT LINKS)

If she reads through those links she'll find a lot of useful information to help her understand Austin's needs from PT.

In particular in one article from Laura Case on page 18 it states "Eccentric muscle and maximal resistive exercise are believed to be detrimental and should be avoided"

With regards to the bike - Laura also shows that bike riding is a possible exercise as long as it is "not against too much resistance"
HI friends
In my opinion PT needs to be started as early as possible.but no vigorous exercises should be done. Stretching,.gait management.posture management all is fine.we need to tell them that range of motion exercises are good ,but only to the extent that they do not damage the muscles.I am in Florida and am pretty mush happy with my PT.We visit her once a week.In summer times swimming or aquatic therapy is the best.
Archana
thankyou, i am working on educating the pt...

Paul Johnson said:
Jenn... you can point your PT to this page where I organized a bunch of links on PT (PT LINKS)

If she reads through those links she'll find a lot of useful information to help her understand Austin's needs from PT.

In particular in one article from Laura Case on page 18 it states "Eccentric muscle and maximal resistive exercise are believed to be detrimental and should be avoided"

With regards to the bike - Laura also shows that bike riding is a possible exercise as long as it is "not against too much resistance"

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