All,

Looks like my Connor is already facing the traditional constipation issues of DMD at age 3. Right now he'll be on Miralax for 3-4 weeks, then reassessed for the next steps.

I'm curious how many of you had kids start their issues this young. Also, what has been recommended to you for the long course of things.

Thank you =)

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Hey Liisa,

Wyatt just turned 2 and he is also on Miralax. We have been able to wean his dose just recently. But I find he still needs it every once in a while. So I just give it to him as needed. He has been on it since Oct of 2007. I'm interested to see what everyone else has experienced.

Jessica
Jessica,

I believe you had previously mentioned in another discussion that Wyatt's story is a replica of Connor's. Amazing how this all works. This is the easy stuff though.

Right now Connor is on high dosage to deal with how "stuffed" he is. I'm assuming we'll eventually taper off or find a happy medium. Is it fairly obvious to you when Wyatt needs a dose?

Thank you,

Liisa

Jessica Rownd said:
Hey Liisa,

Wyatt just turned 2 and he is also on Miralax. We have been able to wean his dose just recently. But I find he still needs it every once in a while. So I just give it to him as needed. He has been on it since Oct of 2007. I'm interested to see what everyone else has experienced.

Jessica
My son was BORN with chronic consitpation. He tore his little rear trying to get hard as golf ball poop out! I hated it! FINALLY we got on Miralax and it helped tremendously. He did not completly come off Miralax until he was about 5. I attribute that to getting on the steroid and becoming more active.
For the long course, once you got him 'cleaned out', a small dose of Miralax everyday did the trick.
Good luck!
Lori
Yes, I notice when he is straining a little more than usual or if he skips a BM one day. Yesterday he didn't have one by the evening so I gave him some Miralax and then finally this morning he had one. He seemed to feel much better after. Just a little tip on dosing. We mix the capful (17 grams) in 8oz of water and then give him his dose. It used to be 4oz now we are down to 2oz. You can store it in the fridge til you use it. I found this much easier than eyeballing 1/2 the dose. Oh, sorry I didn't realize you were the same one who posted earlier. I hope this helps.

Jessica

Liisa Underwood said:
Jessica,

I believe you had previously mentioned in another discussion that Wyatt's story is a replica of Connor's. Amazing how this all works. This is the easy stuff though.

Right now Connor is on high dosage to deal with how "stuffed" he is. I'm assuming we'll eventually taper off or find a happy medium. Is it fairly obvious to you when Wyatt needs a dose?

Thank you,

Liisa

There are some excellent therapeutic methods to aid in the relief of constipation (but always try to do them 2-3 hours after a meal - never on a full stomach, or a full bladder).

The easiest one is to lay your son on his back and gently rub his tummy in a clockwise direction (never go counterclockwise) starting in a tight circle around the navel and radiating out. This action compliments the natural peristaltic action of the lower GIT and will actually help move things along. It can be further complimented (and is a lot easier) if you also use aromatherapy oil as follows:
Six drops of rosemary and six drops of thyme diluted by 1 oz of almond oil, olive oil, or another carrier oil and use to massage the abdomen.

(There are other abdominal massage techniques that start at the appendix and work around, however we have found the one above to be the easiest to do, as you are not constantly having to remember which direction you should be massaging over each section of the bowel.......)

The other exercise that helps is to "pedal" your sons legs while he is laying on his back, and this one is kind of fun too! Again it just aids the bodies natural rhythm and keeps things heading in the right direction. Make sure when you do it that you get the knees up as close to his chest as you can and just do it for a few minutes at a time or everyone gets tired.....

Fluids of course are the other thing that have to be kept up, but we make sure that Mitchell has at least 250mL of orange juice (with the pulp to "bulk things up") everyday. Since we have been giving him this, we have been able to cut down his meds for constipation to every second day - bananas also work wonders for him.

Hope that helps :-)
Thanks for the tips Julie, I do want to caution that there is a new study out about not taking meds with juices, it decreases their absorability.


Julie Gilmore said:
There are some excellent therapeutic methods to aid in the relief of constipation (but always try to do them 2-3 hours after a meal - never on a full stomach, or a full bladder).

The easiest one is to lay your son on his back and gently rub his tummy in a clockwise direction (never go counterclockwise) starting in a tight circle around the navel and radiating out. This action compliments the natural peristaltic action of the lower GIT and will actually help move things along. It can be further complimented (and is a lot easier) if you also use aromatherapy oil as follows:
Six drops of rosemary and six drops of thyme diluted by 1 oz of almond oil, olive oil, or another carrier oil and use to massage the abdomen.

(There are other abdominal massage techniques that start at the appendix and work around, however we have found the one above to be the easiest to do, as you are not constantly having to remember which direction you should be massaging over each section of the bowel.......)

The other exercise that helps is to "pedal" your sons legs while he is laying on his back, and this one is kind of fun too! Again it just aids the bodies natural rhythm and keeps things heading in the right direction. Make sure when you do it that you get the knees up as close to his chest as you can and just do it for a few minutes at a time or everyone gets tired.....

Fluids of course are the other thing that have to be kept up, but we make sure that Mitchell has at least 250mL of orange juice (with the pulp to "bulk things up") everyday. Since we have been giving him this, we have been able to cut down his meds for constipation to every second day - bananas also work wonders for him.

Hope that helps :-)
Seems you misread my post Lori, I'm not saying give meds with juice, I am saying that inclusion of juices with pulp as part of the dietry intake may assist with constipation.
Hey Gang,
Miralax works great..my son has used it a good bit, but I just found out (and have experienced) a great trick...This is a weight loss trick to fill your tummy up so you don't eat so much (maybe good for our boys for that reason), but if you get eat too much, it will help with constipation. What is it? Flaxseed. for daily use to help with weight loss, take 1 teaspoon with 1TBLS of applesauce. The taste is the same, with just a bit of a grainy texture. If you need to use it to 'loosen' constipation, put 1TBLS of flaxseed with the applesauce and it really helps!!!
My daughters nutritionist told us about this for weightloss, but said if you get too much, you will end up in the bathroom. Well, we messed up the doseage the first night and sure enough...I had NO calories in my meal that night!!!!
Just a thought as a potential natural aid for constipation.
Lori
My son also had nasty constipation from birth. Then he fluctuated between constipated and diarrhea. From my reading here, it seems like we've been having a constipated/stuffing issue all along. When we saw a GI specialist, he diagnosed "anal stenosis" which is just having a really tiny opening for the poop to get out of. So we used some special stretching probes for a month and that seemed to help. But then he got constipated again last week and had to have me actually "midwife" his poop one night. (Thank god we had plenty of lube to hand and I knew about supporting his position! I was surprised that he didn't tear.)

Anyway, thanks for listening to the story. Here's the point which might be helpful to you:
So, we're an all natural sort of family anyway and he's already on Prevacid which is, frankly enough for a little 16 mo old....

Rosemary Gladstar's Family Herbal (Storey Books, 2001, pp 180-181) suggests these remedies, which we are about to try. We'll let you know how it "goes"....

* 1/2 tsp acidophilus with meals
* 1 tsp each finely ground slippery elm, flaxseed and psyllium seed with each meal
* "special candy" -- grind together dried prunes, figs, apricots, raisins. Add powdered psyllium seed, slippery elm, fennel seed. Mix with carob powder. Roll into balls and serve daily.
* plenty of room temperature water.
* warm psyllium seed water -- soak 1 tsp psyllium seed in 1 cup water overnight. Add lemon juice to taste.

These herbs are not laxatives, but "bulking agents" just to add some good fiber to the diet. They should be at your local health food store. If they are not, you may be able to special order.
We're going to try the candy first, since Rain is still undernourished. Weirdly (to me) he doesn't seem to like fresh fruits of any kind. I can barely get his sister to eat anything else.

Good luck!
So day 1 of our new herbs is going well, though, of course not quite in the direction I expected. Rain thought the "special candy" was great to throw but not nice to eat. Although I thought it smelled and tasted delicious when I had a little bite to test it. Too bad.
That having been said, we did add the 1 tsp slippery elm, psyllium and flax meal to his morning "milkshake" along with the usual glutamine, creatine and calcium. He's been drinking it all day and it seems to be helping significantly.
Rain has also, simultaneously (of course), at 16 months decided to toilet train (me, he squeals and I run him to the toilet since he isn't walking or crawling).... Anyway, each sitting on the toilet, Rain has had a significant poop, with less straining each time.

I hope this is helpful rather than too much info.
Has anyone's son experience severe bloating with Miralax? We've tried it the last two days and both nights Sam ended up with a very swollen and painful belly. He's still pooping, always has, we're just trying to make it easier for him to get it out. He's normally a very gassy little boys, but I did notice the last two nights that he wasn't giggling (ie. farting) anywhere near as much.

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