Going Beyond Pull-ups for My 5Yr-old Boy with DMD

Updated on March 13, 2008
A.M. asks from Boulder, CO
9 answers

Gosh what a pleasent surprise to see a specific topic. Well, I have a special boy whom was diagnoses with DMD last spring and we're getting over the shock. My son has had dry pull-ups in the morning for quite awhile and I thought oh great we can move on. But recently he has regressed to peeing in them again. I've asked our DMD doc in Denver about this and didn't really get any help, as they didn't think there was any medical reason for this. He is seeing a wonderful therapist to help with self-esteem, but she couldn't think of a solution. Also another related problem is he has no desire what so ever to self-initiate going to go potty #2, poop that is.
Oddly but maybe logically, he did go #2 on his own when we started the training when he was 3 yrs old, but along came his youngest brother and that all went to pot, if you know what I mean. Now he's five and still he refuses and I tell him we all go poop and there's no way around it. When not prompted he'll try his damnedest to avoid the whole pooping thing. Yes, the DMD thing could be effecting him emotionally, though we have not gone in to detail with him yet, I don't think he's old enough....I'll take any response thanks.....

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So What Happened?

I want to thank those who responded. I haven't seen much change yet but we are still working on helping him help himself. I'm aware that some folks may not know what DMD is: this is Duchenne Muscular Dystrophy, a mishap of the dystrophine gene of muscle cells and is a wasting disease, and is life limiting. Please check out the MDA on the internet if you want to know more.

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C.N.

answers from Salt Lake City on

Since as you say, this is a recent regression.
I would look at what has changed that might have created this.

I experienced with my oldest the shift from going to the bathroom when her younger brother was born, so I know what you mean. How close is his younger brother to going on the toilet? Perhaps things with change when they are both using the toilet on a regular basis.

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R.S.

answers from Denver on

Can you tell me what DMD stands for? -R.

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R.W.

answers from Colorado Springs on

Wow, where do I start. I have a 13 year old boy with Duchenne Muscular Dystrophy, DMD, and we went through all sorts of fun when it came to potty training. I think he was finally potty trained right before he hit kindergarten, but he still had accidents here and there at school and he wet the bed often.
Most parents don't even think about letting their kids know what is going on with their bodies in this type of situation, but you've got to tell him something. He knows, believe it or not, that there is something going on with his body. You've already got a great start, we go to Children's Hospital for Muscle clinic and they are a very knowledgable group. They've been there for my family. You need to tell him somethings about this disease as it will affect him more than you.
Second, DMD is a muscle wasting disease and you don't realize how much of your body is muscle and how much muscle weakness affects alot. Like pooping. We had issues to where my son wouldn't poop in the potty at all. He would go in his pants while nobody was around him. It was alot of work, but I would take him in to the potty once an hour until it finally worked.
The DMD docs are great, but they are not the answer to every problem. Your primary pediatrician or family doc can be of more help with the pooping thing as well. It could be as simple as he hurt his butt pooping one time and now he's afraid or it could be his way of acting out because he feels something going on but nobody is telling him anything.
My son was diagnosed at 9 months, when he turned 4 we told him that he had this disease that affected his muscles. We went through alot and I didn't want this to turn into a book. If you'd like to write me, let me know and I'll get you my email address.
Just know that you should probably talk to your pediatrician, they could have better answers than everyone else.
R.

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L.B.

answers from Washington DC on

My son reverted back to pullups (for #2) after his brother was born... We had him completely trained... and about six months after the baby was born it all went out the door. He had a small bout of constipation and he progresively got worse. He began holding it because he did not want to use the potty or it hurt but it really didn't hurt anymore. It became very psychological. He got to the point that he would hold it for a week and the he could actually hold it for two weeks, we went to a specialist at this point. His colon had become so large that is actually wasn't functioning properly and giving him the urges to go. This all has taken me two years to get control of, and we still struggle with it.

So to the point, if your child isn't actually pooping daily his colon may be stretched out and he may not be getting the urge to go like most of us get, that would be on top of DMD.

It is okay to talk to them about their issues, especially if they are going to have to live with them their whole life. However you need to present it in a none scary way.

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A.P.

answers from Denver on

I'm interested in the responses as well. My soon-to-be 5-yr-old still wears pull-ups at night. He's fine during the day but wet at night. Our doctor told us not to worry about it, yet. So no diagnosis. But our son starts kindergarten next school year. I'm concerned about kids teasing him and self-esteem.

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S.S.

answers from Colorado Springs on

Hi A.,

I wanted to let you know about another on-line chat group for parents who have children with disabilities. It's Parent to Parent. Check them out at http://www.p2p-co.org/. They have had a extensive discussion on potty training, and the p2p staff is more than happy to direct you to their archives so you can read that discussion, or just post a new question. You'll get plenty of suggestions! I work at the PEAK Parent Center as one of the parent advisors. I hope this is useful to you. Please check out Parent to Parent, and PEAK!

S.
[email protected]____.com
mom to 3,one with hearing loss

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J.L.

answers from Pocatello on

From what you wrote I assume that your child knows something is going on with his health. I agree that he is probably too young to know everything about DMD and what it means to him, but he is probably a bit scared about what is going on. My daughter has had a lot of health problems, including diabetes, and I found that if we sat down with her and explained what was going on with her body she felt a lot better about what was happening (she was 7 when she was diagnosed). We were careful about what we told her. We sat down with an anatomy book and explained what was happening physiologically and we did explain that it was something she would have forever. We didn't tell her about potential long term disorders. She wasn't happy about having diabetes after the explanation, but I could tell that it was a big relief for her to know what was happening. She also has a long history of UTIs and the anatomy book with explanations really helped with that too (she was 3 when we explained the UTIs)

Also, she went through a long period of depression after getting diabetes. I read quite a bit about it and most kids (adults too for that matter) go through a period of anger and then a period of depression after being diagnosed with a chronic disease. It is very hard for them to cope with the permanence of the disorder. Just be patient and supportive. My daughter was able to come out of her depression after a few months and she has been doing great since then.

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E.J.

answers from Salt Lake City on

I feel silly but I don't know what DMD stands for.

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E.M.

answers from Salt Lake City on

My oldest (Who is now 31) wouldnt use the potty as a little one because he was afraid of it! Has anyone asked him why he wont make poop in it? Seems like such a dumb question to ask but the flushing sound was too scarry for my son. So we just told him that mommy would flush it. We also got a bullseye sticker to put on the back of the bowl and made a game of it. Worked like a charm! (A fat sharpie can put a bullseye dot on a plastic kiddy potty) Hope this helps!

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