My son Tyler, who is 5, has started wetting the bed at night. We dont give him drinks at night but it still continues. He also has a hard time sleeping. And he goes to the bathroom constantly. Could DMD be affecting his bladder? I tried to research online but couldnt find much info.

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We were having accidents and so when we went to our Dr. in Cincinnati - she took a intestinal picture and he was rather backed up with stool. She gave us a RX for that. But, we have chosen to give him more fruit and veggies....I think she told us that when the stool backs up, it presses against the bladder and makes it less likely that he can feel when he needs to go.
Also, I am convinced that there is something about DMD and potty work that is not fully understood b/c it is hard for all boys. I know there is an RX for night time bed wetting.....Char
Is your son on Deflazacort? It causes increased urine production. My son still wets the bed, but I think it is more heridtary than anything....
Lori
Extremely slow toilet training, accidents during the day and bed wetting have all been issues with my son. He is 7 1/2 now. He is potty trained now but it took a good 2 yrs and it was extremely hard to get through to him. He still has accidents with wetting and not making it to the toilet in time but they are few and far between now. The bed wetting goes in spurts. He may go a month without wetting the bed once and then he will go an entire week every night and then suddenly stop again for another month. I have heard many other parents having trouble in this area and I am inclined to think it is a DMD issue as well. I am not sure if it is related to smooth muscle or is a mental issue - due to the lack of dystrophin effecting the brain. My son has some mental issues related to this disease.
My son has been a bed wetter all his life...he too is 5 and will be 6 next month. He wets about 3 nights a week. We do not let him have drinks late and always remind him to 'go' before bed. I have noticed that he wets early in the morning when he is 'half awake'. If I go to wake him for school he may be dry and if he falls back asleep when I check again he's wet. When we were diagnosed I thought "Ah Ha! That's why he bed wets." But, I have heard that boys with DMD do not wet anymore frequent than anyother children. We have no history in my family and this is something my daughter never did. I just find it ironic that alot of parent with boys with DMD have said their sons are wetting the bed. I will bring it up with Dr. Wong in November but other parents have told me that most of their docs don't seem very concerned or don't belive there is a correlation. Let me know if you find anything out...this question has been driving me insane. LOL.
Hey Rhi,
We have addressed it with Dr. Wong as well as the urologist in Cincy. They don't believe it has anything to do with DMD. Seph's daytime accidents did clear up after the constipation was taken care of, but he still wets everynight. BUT....we do have it in our family, so it is not that big of a surprise. Having said that, Seph is the only boy in the family who has bed wet in several generations. So...I don't know!!!
Lori

Rhiannon Traigle said:
My son has been a bed wetter all his life...he too is 5 and will be 6 next month. He wets about 3 nights a week. We do not let him have drinks late and always remind him to 'go' before bed. I have noticed that he wets early in the morning when he is 'half awake'. If I go to wake him for school he may be dry and if he falls back asleep when I check again he's wet. When we were diagnosed I thought "Ah Ha! That's why he bed wets." But, I have heard that boys with DMD do not wet anymore frequent than anyother children. We have no history in my family and this is something my daughter never did. I just find it ironic that alot of parent with boys with DMD have said their sons are wetting the bed. I will bring it up with Dr. Wong in November but other parents have told me that most of their docs don't seem very concerned or don't belive there is a correlation. Let me know if you find anything out...this question has been driving me insane. LOL.
No Ty is not taking any prescriptions right now were still in the begining stage. He had a doc appt. yesterday and their starting the physical therapy. They also prescribed a multi vitamin and miralax (stool softner) to see if that helps take the pressure off his bladder, as hes constipated. Icant tell you how much I really love this web sight. Id be lost without being able to talk and ask questions to other people who are going thru this. Thank you very much for the comments.

Lori Ware said:
Is your son on Deflazacort? It causes increased urine production. My son still wets the bed, but I think it is more heridtary than anything....
Lori
The dctors said it could possibly be because of constipation so they perscribed him miralax to see if that helps.

Rhiannon Traigle said:
My son has been a bed wetter all his life...he too is 5 and will be 6 next month. He wets about 3 nights a week. We do not let him have drinks late and always remind him to 'go' before bed. I have noticed that he wets early in the morning when he is 'half awake'. If I go to wake him for school he may be dry and if he falls back asleep when I check again he's wet. When we were diagnosed I thought "Ah Ha! That's why he bed wets." But, I have heard that boys with DMD do not wet anymore frequent than anyother children. We have no history in my family and this is something my daughter never did. I just find it ironic that alot of parent with boys with DMD have said their sons are wetting the bed. I will bring it up with Dr. Wong in November but other parents have told me that most of their docs don't seem very concerned or don't belive there is a correlation. Let me know if you find anything out...this question has been driving me insane. LOL.
Given that your son is also experiencing frequency I would have a word to your GP, as it could be something as simple as a UTI, stress or his BSL's are out of whack. There is also the consideration that he just may be so tired (especially if having a growth spurt) that he just can't wake up enough to make it to the bathroom.

If he appears lethargic (which then often leads to an inability to sleep believe it or not) and just "out of sorts" it wouldn't help to get it checked out. If it turns out to be nothing but exhaustion, at least your mind will be at ease and you can discuss energy conservation techniques with your therapist.

In the meantime there are some excellent continence aids available (we use a kylie bed pad on our sons bed, purely to catch any leaks at some ungodly hour if I hold the urinary bottle at the wrong angle!) They are not overly expensive, and just ensure that the urine is drawn away from the skin, as at night it does become more concentrated and really isn't the best thing to be sleeping in....... (plus it saves a tonne of washing which is an even bigger bonus!)

Nocturnal enuresis has been linked to the disturbed sleep pattern associated with sleep apnea, although it is typically associated with the older boys so I would hesitate to make a connection as it is a tenuous link at best given Tylers age.........Plus of course there is the fact that the process of voiding is largely under muscle control, however you don't mention daytime "accidents" so if the condition was as a result of low sympathetic tone, this would also be an issue.

I think the bottom line is even bed wetting is only a problem if it's making yours or Tylers life miserable. If this is the case, underlying issue or not, the problem needs to be addressed and the advise of a continence nurse sought. If its not causing you any major grief, and you want to "ride it out" that's OK too.

Hope that helps.
Good luck!
Sorry major typo there..... should read wouldnt HURT to get it checked out.........

If he appears lethargic (which then often leads to an inability to sleep believe it or not) and just "out of sorts" it wouldn't hurt to get it checked out. If it turns out to be nothing but exhaustion, at least your mind will be at ease and you can discuss energy conservation techniques with your therapist
Hi My son will be 9 in 2 weeks. Our issue with him is frequently taking bathroom breaks during calss time. He just started 3rd grade and every year teachers asks us about how often he goes to the bathroom. He occasionally has accidents at night. Maybe once every other month. He is also one of those kids who holds it until the last minute. He also was late with potty training, almost 4. I wonder too, if it DMD related.
Long post, so I apologise and let me say, please don’t shoot the messenger, but this is a lesson I learnt a long time ago……

My gran used to have an expression: "sometimes a sniff is just a sniff". It took Mitch being diagnosed for us to fully understand what she meant.

Most parents spend years after their children are diagnosed trying to tie up different clinical presentations to the DMD, without ever realising that sometimes the two things are not related. You can have a child with DMD and toileting issues, but it does not mean that DMD is the cause.

It is like the weight issue with steroids. Some boys gain weight as a result of the treatment for DMD, but DMD itself is not the cause for the sudden increase in weight the steroids are – the two are not one and the same.

Whilst there are a lot of DMD families that experience toileting issues, this is the same for parents of children with a whole host of conditions, as well as children that are perfectly healthy. Toileting issues are the most common issue in children with or without DMD and boys are 10 times more likely to continue with problems than girls – which given those odds naturally means a lot of boys with DMD will show clinical symptoms.

Mitch spent a lot of time going to the toilet during class - often for a trickle. It took talking to his carer (who kept track of it) to work out it was classes with a lot of writing that caused his frequency - he was basically too proud to admit he was having trouble writing, so used toilet breaks to have a rest and avoid the embarrassment of not being able to keep up. We got him a laptop and things went back to normal. Now he only goes once or twice, and always during the breaks. Did the DMD cause the issue? No. Did the stress of living with the condition cause the problem? Absolutely. And that is why my very wise grandma tried to get me to understand that “sometimes a sniff is just as sniff.”…….and once I got what she was on about, I stopped looking to connect everything to DMD, and started treating each symptom as unique and individual – and it has made life so much easier I must say.
Hi April,

My son started having accidents when I switched his Deflaxacort to night time instead
of monring Dr Biggar mentioned that might be the cause. Sure enough switched him
back to morning and haven't had a single accident since.

Cindy

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