Kian is pretty active but we went to a hotel with an indoor pool and spa. He was so sore that he could barely move when we got back. It was a bit scary. I didn;t feel that he overdid it, but we had to make many exceptions for the rest of our trip. Has anyone else experienced this?

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What was the temperature of the water in spa? I was told not to put my son in water that was over 94 degress.

I have read in many threads that a warm water baths relax the muscles hence are good for our kids. Michelle, was there a reason also shared with you when warm water bath above 94 deg was not recommended?

Michelle Scaglione said:

What was the temperature of the water in spa? I was told not to put my son in water that was over 94 degress.

Hi, I been taken my son to swimming & hot tub [over 100degrees] for over two months now,he never complain of anything he loves it.We don't stay in a hot tub more then 10mns,where I do his stretching.
No one told me that hot water[over 94deg]is bad !.
I was told by one of the PTs that it can increase muscle breakdown more quickly. I dont know how true it was but from then on I didnt allow my son in water warmer than 94 degrees. Before I was told that I did have him in a spa at 97 degress. He never complained about soreness or anything. I felt horrible that I could of caused any damage. I had spoke to DR. Biggar and Helen Posselt and they felt I didnt do any harm to my son. But from then on I was told from his dr not to go over 94 degrees. I was told it was best not to go over his body temperature (98 degrees) but 94 degrees would be ideal.


Did you ask your DR about putting your son in water over 100 degrees? If he feels its ok then go ahead. I am only giving the information I was told.
Just swimming alone makes my son very tired and his muscles very sore. It seems to make him more tired when the water is colder. He loves to swim and since this is the only type of real exercise he can do we just encourage him to pace himself. My husband took him swimming this last time and they had alot of fun in the water but over did it. He was so worn out that he could barely walk the rest of the night and was very tired the next day as well.
I've had this happen to me a couple of times.
I was swimming for more than 2 hours.
Just don't do swimming every day so he has time to rest up.
I am a PT who works with many boys with DMD in the water on a very regular basis. Based on what you mentioned, it would seem that your son was unaware of how hard he was working in the water and overdid it. Being in a gravity free environment can be very deceiving regarding your exertion levels and it is very easy to overdo it without seemingly doing that much because of the resistance the water provides. Next time you many want to try going in the pool for 30 minutes and see how he does over the next day or so and then slowly increase his time if he tolerates that 30 minutes well. I hope this is helpful!
Nicolas has never experienced soreness or lessened movement after swimming or hot tubbing. You may want to speak to your doctor about that. But with any exercising, and swimming is definitely exercise, the boys can become very tired. While some boys show signs of soreness or pain, others just get easily fatigued. I did have an issue a year ago with blood in Nicolas urine after a day at the water park.

I emailed Dr. Wong about this which can be a serious condition. Please read her response below:

This sounds like rhabdomyolysis and not kidney stones- muscle protein in the urine - from the increased physical activity - reported commonly in our DMD boys at the waterpark. ( it tests positive for blood in the urine test - blood and msucle proteins test positive for this test).It sounds like it has resolved - you did the right treatment with aggressive hydration. If this happens again and there is muscle cramps - need to go to the ER for tests for kidney function, CPK and urine tests. Intravenous hydartion is needed for severe cases to flush out the muscle proteins to avoid clogging the kidneys.Do get the pediatrician to check Nicolas out to makes ure he is back to baseline if there are still urine discolorationA good lesson is to have plenty of fluids at any time to flush out any proteins or vitamins

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