Over the years, moms have shared successful techniques for winning against constipation in Down syndrome. Excerpts from posts from the Einstein-syndrome email list are below. Please be warned that the moms “tell it like it is” and use descriptive terminology to do so. The reality is that motherhood includes dealing with bodily functions “up close and personal.” To protect the privacy of these little folks, their names and that of their mothers have been changed.
|Describing the Problem||NuTriVene-D||Serotonin|
|Thyroid||Gut Dysbiosis||Enough Liquids|
Rhonda has problems:
Rose has had a terrible time with constipation. She can go for a week or more without a BM and then when she passes it she tears and bleeds. We had one episode where her rectum was pushing out. The doctor said she needed to be “trained” to have a bowel movement and did not want me to give her a suppository or enema even if that meant she would go for a week. I was not going to do that.
Our Adam is six, and when he was three or four we thought he had Hirschprung’s Disease, until we discovered that a tiny dose of an SSRI, (which made the Seratonin that he needed available to him,) took care of it. Now his colon doesn’t get jammed up anymore! It’s pretty wonderful!
I tried everything. I know how worrisome it can be. Poor little Adam used to dread going poopie because it hurt so much—and he would be so embarrassed if he had an accident.
I do recall that being talked about. If I remember correctly I was told that they use Prozac. Is that correct?
Actually they use Luvox. It is a very low dose, not the kinds of doses they use for treating depression. Were you on the list when Belle talked about what this treatment did for Morgan? Here’s the Reader’s Digest version. Morgan had been diagnosed with Hirschprung’s disease—not a diagnosis from positive evidence, but because no other diagnosis could explain rock hard, grapefruit sized stools once every four days. (Major pain, screaming, blood, etc.) She tried all the natural remedies (you know how Belle operates on such matters) and then, following the serotonin route, had Morgan’s serotonin levels tested, and they were very low. Serotonin is the neurotransmitter responsible for peristalsis (the squeezing action that moves food through the intestines). So, they used one of the SSRI’s, and Morgan’s “Hirschprung’s disease” was cured. Several of the other kids on the list with serious constipation problems were also using this treatment with some success. These kinds of drugs, of course, are not for use unless they are really needed. However, if serotonin levels are off enough to cause this level of bowel problem, then they are off for all the other things that serotonin does in the body, too.
The other things you could try before resorting to this are things like 5-HTP (Serotonin precursor), folinic acid (which seems to improve the status of several neurotransmitters, including serotonin), senna tea, increased oils (I would go with something that has some health benefits like maybe perilla oil or olive oil) and possibly trying an increased dose of the digestive enzymes. Perhaps with some combination of these things, you will get past this problem. However, if the real problem is low serotonin, with the exception of the first two solutions, these are bandaids to the problem, not addressing the root cause.
Marie used to have terrible constipation, but not to the extent of some of the others on this list. But she would not go for several days at a time, and each bowel movement was a terrible ordeal. We started her on NuTriVene-D when she was three and a half, and her constipation immediately cleared up. I think it was a combination of the digestive enzymes and that the NuTriVene-D improved the status of her serotonin because of the tryptophan that is included.
Patty is concerned:
We are easing into the supplements so it’s still a week until we start using the enzymes. Any other suggestions? I hate having her cry every time she goes.
As for the constipation, once the NuTriVene-D enzymes are started that should help a lot. Personally, I’d probably start the enzymes a day or two early to help her out. If it continues after that, there are suggestions ranging from upping the enzymes a little, to senna tea, to cascara sagrada.
What we found with our Marti was that she could not handle the regular formula of NuTriVene-D. We had to switch to the beta-carotene free, microencapsulated formula. The beta-carotene makes her extremely constipated, to the point of blood in the stools and ripping the inner walls.
Abby has questions:
Are there any other ideas out there? Herbs, special foods? Would it be worth trying a rice milk instead of regular?
For constipation, the one of the first things to try is eliminate milk and dairy products from his diet. Milk is very constipating. Low levels of serotonin can cause constipation because serotonin is the neurotransmiter responsible for movement of the muscles of the gut. Serotonin is low in Down Syndrome, and several of the nutrients in the NuTriVene-D are aimed at increasing serotonin. But for some kids, even this is not enough. Some parents have successfully treated terrible constipation (bleeding, screaming, torn anus) with low doses of SSRI’s which increase the available serotonin.
Nicole jumps in:
I guess it’s time I jump in here on the constipation issue. About three years ago Jamie was big help to me with this issue and we often discussed what to do. She had a very hard time with Hans, and Chucky was in a close second. Chucky wasn’t going for days and I was definitely doing those suppositories. Just ask hubby who after midnight had to rush out on two occasions to find those things cuz I ran out…and Chucky was definitely screaming. It tore our hearts out.
Jamie contacted a gastro expert on the web who helped her out with some good info. Jamie, prior to her talking with the doctor suggested that we start Chucky on senna tea. The doctor said it was the least of laxatives and that it was okay for longer periods of time. Now mind you, I’m not saying it’s great to be on laxatives, we all know it’s not. But sometimes you gotta do what you gotta do. Remember, I have a child who thinks food is a green-eyed monster, drinking isn’t anything he’s thrilled about either. With that mixed bag, getting good foods down him to help in this area or lots of water wasn’t going to happen.
The other alternative was mineral oil which inhibits nutrition absorption, so that was out.
So we began the long road of senna tea. I do not know what would have done without it. Personally Rhonda, I wouldn’t listen to what your doc said, if your child learns that it will always hurt to “go”, then that kid will train himself not to go. Do you go where pain is? I think not! In fact, if memory serves me well, that is exactly what happened with Jamie’s Hans. In my humble opinion, it is far better to help them go than rip their poor rear end up! With our tea, Chucky goes once a day, pretty much like clock work.
Recently I posted about our being able to finally get a steeping time down to five minutes with the senna. When we first started, we had to steep it for fifteen minutes. When Chucky was one we could no longer use the NuTriVene-D night time formula, which contains the tryptophan and ornithine to aid in the release the Growth Hormone for our kids as well as aids in serotonin production.
Since our being able to finally put Chucky on the Night-time formula again, and thus raise his serotonin, his bowels seem to be responding. Like I said, we now have the steep time of senna down to five minutes these days. Before that I couldn’t get it lower than nine minutes.
One more side note with reference to Prozac (SSRI), one needs to remember that Prozac contains fluoride. We did try this a couple of times (before I knew about fluoride in there) and this didn’t help Chucky either, not only that, he was a zombie on the stuff—so lethargic.
Well that’s our story.
Rhonda wants to know:
I would like to know about the senna tea. Where do I buy the tea and what are you talking about when you say you steeped it for thirteen minutes or nine minutes?
Here’s the “poop” on the whole thing:
The senna tea is Traditional Medicinals/Smooth Move tea. You can get it at a health food store.
As Jamie said, the longer you steep the tea, the stronger it is. What’s so exciting to us is that I’ve gone from fifteen minutes (strong) to actually four and a half minutes which is much weaker—so we have improvement around here—not a small celebration!
I microwave (groan, yes microwave) about one inch of water in a cup for one minute on high. Then take the tea bag and put it in the water and cover it. The first time you do this, you may want to start at 10 minutes since it sounds like you have a back up already happening. You’ll have to experiment thereafter to see what works. Then I take that small amount of concentrated tea and use that liquid in my son’s hot cereal. I am now using rice cereal and after it starts to boil with the juice I already have it in, then I add the senna concentrate so as not to over cook the senna, and continue to cook the cereal to the right consistency.
That’s how I give the tea to Chucky.
It usually takes about twelve hours for the BM to occur. If you are really backed up it may take another second dosing. You’ll have to play with it.
One mom questions:
My 19 month old son is beginning to be more and more constipated. Prunes usually did the job before but that is not working anymore. I’ve used chili (beans) and pea soup for the fiber and that helps some, but he can’t only eat those things. He does not like fruits or juices, only milk and water and basically any other foods. He is still on chunky textures and will not finger feed except french fries – no cheerios, cookies, crackers, raisins, etc.
Ginger has several suggestions:
I recently spoke with a nurse practitioner from Duke who gave me a lot of advice about how she treats constipation:
Her first line of defense is dietary: high fiber, fruits and vegetables and being sure that there are adequate fluids, particularly water.
Then she moves on to psyllium. I suggest that instead you might want to try grinding up one tablespoon flax seed in a coffee grinder. You get the double benefit of the husks for moving the stool and extra omega-3 oils from the flaxseed.
Then she moves on to mineral oil. I asked her about the safety and she says it is not absorbed into the gut. I don’t know if I fully believe that, given our kids’ leaky gut issues, but her opinion is that it is completely safe.
Then comes glycerine suppositories.
Then comes enemas. The bad thing here is that kids can get a bit dependent on these last two.
I assume you’ve also tried increasing the dose of digestive enzymes? That could be a big help too.
Another doctor’s suggestion on that topic is to add ¼ to ½ tsp of sorbitol per day to loosen stools.
Jamie has information:
This is just an FYI. I don’t mean to recommend anything, and I welcome those of you who are familiar with these things to comment one way or the other. This experience is Hans’, and reactions may be different for other children.
We did give Milk of Magnesia in the beginning when Hans was two. Milk of Magnesia provides 400mg Magnesium Hydroxide per teaspoon. We were giving a Tablespoon (per our Pediatric Gastroenterologist), producing nothing. I was told that Magnesium Citrate would blow cement out of anything. I had to have a prescription to get this. It produced nothing. This summer I began giving a supplemental Magnesium Oxide that I got at CVS pharmacy. I found that when I gave one 250 mg tablet of this daily, Hans could be taken completely off of the senna tea. If we run into an occasional problem with constipation, I merely up his daily dosage to two tablets, and it provides relief within a day.
But Rhonda sees a possible problem:
Does this cause any problem with giving the Nutrivene? I am afraid to add supplements for fear that I will overdose her with the NuTriVene-D and any added supplements I may give.
The only thing I know is that if you give too much magnesium, you can put calcium out of balance. I would go with the minimum dose to get results, and then wean back to the minimum to maintain it. If you are giving it continuously, perhaps getting calcium checked is in order.
Sharon has been using Magnesium:
Magnesium the constipation killer! There was an issue at one time about not using Milk of Magnesium but I spoke with Dr. L at one point who said the reason it works as a laxative is because magnesium oxide is not absorbed. So what makes it bad for for magnesium supplementation actually works to our advantage for constipation. We also used magnesium citrate alot….almost daily. The only problem we encountered here was that when my daughter was older they found her calcium/magnesium ratio was off due to high magnesium and that can impact a heart condition. This is something that is tested regularly so it’s easy to keep an eye on. But magnesium was definitely something we used on a daily basis to keep her going.
Also, just thought I’d mention, that we had good results using Magnesium O7
(oxygenating as opposed to citrate). We did it for a few months and he would always have regular bowel movements (even more than one a day).
I think I have uncovered Linda’s troubles. It was cyclical and the cycle had to do with how much time we spent in the car—yes, constipation caused by the car!
Here is what was happening: Linda would be happy, we would all feel happy, we would load in the car and go run some errand or just go to get out of the house. On those days she spend a lot of time sitting—sitting in the highchair to eat, a little time in her exersaucer, the stroller, the car seat and even when I took her out of her car seat while the kids ran in the store or whatever she was still sitting on my lap.
One morning she was working for too long a time to have a BM, so I took off her diaper to see what was going on there, and low and behold that child could not push the rest of the BM out past the stool in her diaper! Once the diaper was off, it was all over. Now this got me to thinking, if she has that hard of a time while laying flat on her back, how could she even manage to pass any gas while sitting (much less have a BM)??? You can plainly see by the marks her diaper makes, that when she is sitting, she is sitting like a lump and not moving her bottom a bit. I am sure that her tummy was just filling up with gas which also explains why she was being fussy every night.
Even if she did have the urge for a BM, there was no chance. Once she laid down in bed after nursing, now in her comfy jammies with no waist bands, her GI tract finally could start moving again. All the gas turning the corners is painful. This also explains why she had all her BMs predawn.
If you thwart that natural urge enough, after awhile its going to be nothing but trouble and I would imagine her whole GI tract was suffering and being slowed down. Not a good thing when her gut is slow to begin with.
For the past two weeks I have made sure that she is spending more time on the floor than sitting, along with a bit of aloe vera/prune juice every morning and she has had a BM every single day but one! And the BMs are happening later in the afternoon not at 4 a.m. She has not had one sleepless night and the doctor said I could take her off her zantac. The child is drug free now. Thought I would pass that on as there have been a couple of nights here where she was in pain and it was scary. They were thinking of putting her on more drugs.
Lying on the floor is pretty easy thing to try.
Constipation is also a sign of poor thyroid function.
Miriam sumarizes some list discussions:
There is quite a bit of buzz about a recently published book by Dr. Natasha Campbell-McBride titled Gut and Psychology Syndrome. She points to gut dysbiosis as the basis of autism and other neurological disorders, and describes a path for recovery.
Here is the first of six YouTube videos featuring Dr. Natasha Campbell-McBride and Donna Gates (of the Body Ecology Diet) discussing gut health. Parents discuss whether the Body Ecology Diet(BED) or the Specific Carbohydrate Diet is most helpful in healing the gut.
Ellen mentions the gut bacteria:
I don’t know if this will help but Zeph, non DS, was found to be lactose intolerant when he was about two. He had always had a swollen tummy and went between pooing 5 or 6 times a day to being very constipated and passing blood.
Anyway we tried eliminating dairy and it made no difference…Then we gave him live yoghurt every morning on an empty stomach and the job was done. I gave him this every morning for over a year and he was soon able to eat all dairy.
Roberta has been thinking about yogurt, also:
Is your yogurt homemade? What type of yogurt maker do you use and where do you purchase your products?
I’m still wondering what yogurt maker to buy — leaning towards Yogourmet.
Sharon is making yogurt:
I bought a Yogourmet and put off making yogurt for so long because I thought it would be too complicated; the machine was perfect; I just followed directions and it came out beautifully.
Mari has been working on her son’s gut:
The Specific Carbohydrate Diet (SCD) has worked for Dean. He seemed to have malabsorption issues at age 2 as he was deficient in several things, including iron. He had horrible constipation and woke up in pain at night. Between the diet and Nutrivene, he has done great. The other thing we determined because of the time he was waking up (12-2) that he was having trouble digesting fats.
We can’t stress enough the importance of increased water intake.
My son is also a very picky eater and has had problems with constipation and did not drink fluids. … Anyway, with his constipation, his dietitian that comes every other week told us that we needed to get as much fluid “water” in him as possible. Once we started to (at first force) water in him, his bowels were able to use it to “move along” better. Without enough water, it stays put.
Kay has the data:
In working with Chembalance with our families and reading food diaries, most children with constipation don’t drink enough water – as well as having blood chemistry imbalances.
You can read the rationale of Chembalance at www.lifebalancesprogram.com.
So the first place to start with constipation is to do a diary of fluid intake and make sure the child is drinking enough.
Ditto on the water. It’s important to have enough good quality salt to retain the water in the bowel, also. (Salt is also essential for intelligence). If the body doesn’t have enough salt, no water how much water you drink, it just pours right thru you. A good book to read on water is and salt is, Your Body’s Many Cries for Water, by F. Batmanghelidj, M.D.
We seem to still be struggling with constipation despite being having Grace on
Miralax and giving her healthy fiber foods.
I used Aloe Vera gel (about 1/2 teaspoon orally) for Whitney when she was
constipated for several days and it seemed to work quite well. I also
discussed it with the pharmacist and he looked it up in his book and said it
is effective for constipation and usually takes about 24 hours.
Rita tried increasing vegetables:
Thanks so much to those who responded to my previous message about nutrition/constipation,etc. I put zucchini and other veggies in my spaghetti sauce last night and Brandon gobbled it up – so that’s a step forward at least! And I’ve been encouraging more fluids too.
I have used an Epson salt bath at times he went more than 2 days without bowel movement. Worked within 15 minutes for us.
Debra blames dairy:
We made great strides after stopping all dairy products, but now Danny is
able to tolerate raw milk products, I still do not give him uncultured milk
products so I am not sure how he can handle those. He does get raw milk
kefir, homemade yogurt and butter every day. If I do not give Danny these
cultured products he will start with the bowel problems so for our family
the right kinds of milk are helpful but many cannot tolerate any dairy at
all. Wheat is another big problem for us I only give sprouted or soaked
wheat products even then I try to switch up with Kamut and spelt. Best
wishes, I know it is hard.
But not all milk, says Suzi:
Raw milk is so different than pasteurized! Many in my family have
trouble with pasteurized milk, but no problem w raw. Cultured is even better
because then it is like taking a probiotic every time you have milk (unless you
Iron supplements are also constipating
Disclaimer: As we work to keep our children with Down Syndrome healthy, it is wonderfully helpful to build on the research and experience of parents who have gone before us. This does not, however, constitute “medical advice,” but only the experience of other parents dealing with Down Syndrome.
As you read, remember that every child is different. What works for one child may not work for another. Many of the ideas on this site are out of the medical mainstream. Your doctor may not endorse them. We strongly advise that you use ideas in the articles below as contributing data for your own research, consult with appropriate medical professionals and make your own decisions. If, after doing your research, you decide to follow a practice that is out of the medical mainstream, carefully monitor your child’s progress by appropriate medical testing and oversight.