When Presley was born, she experienced episodes of low heart rate and apnea. She went home on a low dose of caffeine and a apnea monitor. We quickly weaned her from both and by 2 months she stopped taking the caffeine. The day after we discontinued the caffeine though, she developed constipation. This is fairly common in children with Down syndrome due to various issues such as low tone of the abdominal muscles, potential thyroid issues making everything in the body sluggish, and those requiring heart surgery may not have the ability and strength to take in sufficient liquids or to be physically active enough to maintain regular bowel movements. In rare cases, Hirschsprung's disease must be ruled out, which is a disorder when the lower portion of the large bowel is missing the nerve cells so it does not function properly. This blog entry is to show you some of the things we have had success with and some of the things we have read about that may possible help someone else in their struggles to keep their child healthy and regular.
First of all, Miralax is not a good solution. It was recommended by a GI doctor for Presley, however after researching it before I gave it, I noticed that it is NOT approved by the FDA for use in children and there are no studies to assess the side effects of long term use. Read the infamous NYT article here that brought it to many parents attention.
This is what Dr Aviva Romm had to say about Miralax:
"In 2012 the Empire State Consumer Project, an environmental consumer action group in New York, petitioned the FDA to more aggressively investigate the use of Miralax in children. Should we be concerned about this medication? I think so! The FDA admits to years of reports of tremors, tics and obsessive-compulsive behavior in children given laxatives containing PEG 3350, the active ingredient in Miralax. A 2014 FDA investigation into the safety of Miralax discovered that tiny amounts of ethylene glycol (EG) and diethylene glycol (DEG), the main ingredients in antifreeze, were found in all batches of the drug they tested.
Furthermore, an FDA spokesperson admitted that “many of the reported adverse events were classic symptoms of ethylene glycol ingestion.” Some children regularly using Miralax had blood acidity when tested, according to the FDA. This is another known effect of ethylene glycol poisoning. In spite of this, small amounts of these toxic contaminants are actually considered acceptable in the final product, and are, according to FDA standards, and considered “safe.” However, this is when used in adults, and only for up to 7 days at a time. There’s still no data on what happens in kids, whose nervous systems are developing well into their teens, when they chronically ingest these toxins. While a new research group, funded by the FDA, is convening at Children’s Hospital in Philadelphia to investigate the safely of these substances in children, it is disturbing that anyone would ever think it’s okay to consciously include antifreeze in a children’s medication – particularly one that is used daily over a long period of time."
So, what are you supposed to do? Here is a list of ideas that you can discuss with your child's physician about what would be right for your family.
Aloe Vera- Outside of the United States, aloe is considered a fast and effective remedy for gastrointestinal complaints. Drs. Joseph Pizzorno and Michael Murray, naturopathic physicians and authors of the "Textbook of Natural Medicine," claim that aloe juice is a potent and effective stimulant laxative. Its fluid is drawn into your stool, making it softer. Additionally, small doses of aloe juice, contained inside the skin of the plant's leaf, help the digestion of protein and strengthen your body's intestinal musculature, easing constipation and irregularity. In comparison to other herbal stimulant laxatives, however, such as senna or cascara sagrada, larger doses of aloe juice draw less fluid into your large intestines, making it less likely to cause dehydration, diarrhea and cramping.
For more information and dosage check here.
Ginger - some people have used ginger tincture with success. We use some regular ginger powder in the girls smoothies each morning. (Please consult with your doctor for questions, concerns, and further advice)
Milk of Magnesium (magnesium hydroxide) - see Tricia's previous post about "surprising results about Magnesium" to learn how most people are actually deficient in Magnesium: http://www.3of21.com/2013/01/surprising-results-from-magnesium.html We had Presley's constipation under control with the natural methods until we began using Iron supplement for her low blood levels. After discussing with our Pediatrician, we gave the recommended dose of 1/2 tsp orally twice a day for 3 days, then 1/2 tsp orally once a day as needed. This began to work immediately and we will continue to use this while we are using a higher dose of iron to replenish the iron stores. At this time, Presley is 21 months and weighs approximately 25 lbs. Milk of mag is a slightly alkaline antacid also, which may help our children with other issues such as indigestion or heartburn. Read more about Milk of Mag at: http://www.buzzle.com/articles/milk-of-magnesia-ingredients.html
Epsom salt baths - Espom salt is comprised of Magnesium and is another great way to boost your child's magnesium intake as it is well absorbed through the skin. Read about all the great benefits of epsom salts at: http://www.saltworks.us/salt_info/epsom-uses-benefits.asp We use 1-2 cups each bath with at least 15-20 minutes of exposure time.
Yogurt, probiotics, and kefir - children with DS may not have a strong immune system, so replacing and encouraging the normal gut bacteria will assist the body in helping itself by strengthening the immune system. The following was taken from: http://en.wikipedia.org/wiki/Human_gastrointestinal_tract
"The gastrointestinal tract is also a prominent part of the immune system.[11] The surface area of the digestive tract is estimated to be the surface area of a football field. With such a large exposure, the immune system must work hard to prevent pathogens from entering into blood and lymph.[12] The low pH (ranging from 1 to 4) of the stomach is fatal for many microorganisms that enter it. Similarly, mucus (containing IgA antibodies) neutralizes many of these microorganisms. Other factors in the GI tract help with immune function as well, including enzymes in saliva and bile. Enzymes such as Cyp3A4, along with the antiporter activities, also are instrumental in the intestine's role of detoxification of antigens and xenobiotics, such as drugs, involved in first pass metabolism. Health-enhancing intestinal bacteria serve to prevent the overgrowth of potentially harmful bacteria in the gut. These two types of bacteria compete for space and "food," as there are limited resources within the intestinal tract. A ratio of 80-85% beneficial to 15-20% potentially harmful bacteria generally is considered normal within the intestines. Microorganisms also are kept at bay by an extensive immune system comprising the gut-associated lymphoid tissue (GALT).
Fruit Lax - aka "fruit laxative", there are a variety of different recipes called "Fruit lax" online, this is the one we use. We mix it with almond butter and the thermos cereal. Read more about it here from a previous post.
1 cup pitted prunes
1 cup raisins
1 cup pitted dates
.5 cup orange juice
.66 cup prune juice
For even more fiber add 1 cup of natural wheat bran to the fruit mixture. Do not if avoiding gluten.
Combine all ingredients in a bowl and soak overnight in the refrigerator.
Blend in blender until smooth and serve.
Coconut Oil - sometimes we mix 1/2 to 1 tsp of organic coconut oil in Presley's morning smoothie. The following article was taken from: http://www.poopdoc.com/articles/virgincoconutoil.html
"So how does virgin coconut oil provide relief from constipation? The reason why virgin coconut oil eases constipation is because it is fibrous and it cleanses the colon very effectively. It also increases your metabolism rate letting your system break down food faster and effectively which can lead to increased bowel movement and weight reduction.
Virgin coconut oil is also an anti-bacterial, anti-fungal, and anti-viral agent. The fatty acids found in virgin coconut oil can also boost your immune system and equips it with the tools it needs to fight off bacteria, diseases and other infections.
Most people wouldn’t believe this just because virgin coconut oil is oil and as we all know oil is bad for the health for numerous reasons. The distinctive characteristic that sets virgin coconut oil apart from other harmful oils is that it doesn’t turn to fat. It is incredibly safe and it can actually lower your cholesterol."
Digestive support essential oils - we use essential oils for a lot of issues and love the results. The wonderful smells are a bonus. The owners of Hopewell essential oils have a child with Down Syndrome, so they have a vested interest in finding oils to help them with potential issues. When you massage your child's abdomen/stomach, go in a clockwise circle which will follow the large intestine as it goes toward the end of the colon to push the gas/stool and stimulate the muscles to move. I also follow up with a few downward strokes across the entire abdomen.
Digestive support Ingredients: Tarragon (Artemesia dracunculus), Ginger (Zingiber officinale), Peppermint (Mentha piperita), Juniperberry (Juniperus communis), Anise (Pimpinella anisum), Fennel (Foeniculum vulgare), Lemongrass (Cymbopogon flexuosus) and Patchouli (Pogostemon cablin) . These oils are blended to assist in relieving digestive problems such as upset stomach, belching, heartburn, bloating, and to abate the stomach virus, diarrhea, and constipation.
Thermos cereal - this was recommended to us by Dr Jullian Neil who is the nutritionist for the National Assocation of Child Development (NACD), the neurodevelopmental program we use. http://nacd.org/health/thermos.php.
Check out Tricia's great post here for more information and pictures.
Fruits, vegetables, and water - Adding fruits and vegetables is a good idea for the entire family. Most of us have already tried the pear, prune, or apple juice as well as many pureed vegetables to help with constipation. Sometimes combining items as in some of these recipes. I put an entire apple without the peel into Presley's smoothie each morning. We mix strawberries, lemons, oranges, blueberries or whatever type of fruit we have on hand into a gallon jug of water to make our own vitamin water also. Water is re-absorbed as stool moves into the end of the large colon. The longer it sits there, the more water is re-absorbed creating hard uncomfortable stools. So, you must stay hydrated to be able to go regularly. More fluids, more fiber!
Fig water - this was also recommended by our nutritionist, Dr Jullian Neil (http://drjulianneil.com/), who has a child with Down syndrome. While I did not see this on his website, he recommended soaking figs in purified/filtered water overnight and having Presley drink the water the following day. We did not personally try this because the thermos cereal worked so well for us.
Digitally assist - yes, this means putting on a glove and stimulating the rectal area with your finger. When you are a parent and your child is in pain, you do what you have to do. I am a Physician Assistant, and previously a Registered Nurse before that, so I am actually "trained" to do this. Please discuss this with your doctor and learn how to help your child. I simply put on a glove with a lubrication such as coconut oil and insert my smallest finger into her bottom to loosen the grip of the sphincter. Within minutes, the impacted stool is free and she gets instant relief. We utilized this when Presley was an infant when she was breastfeeding and not taking in solids yet.
Chiropractor - aligning the spine properly has many benefits and encourages the body to function optimally. I read the following from www.yourspine.com: "Chiropractic adjustments (particularly in the lower spine) may help relieve constipation in certain individuals. Muscles in the intestine push stool to the anus, where stool leaves the body. Special nerve cells in the intestine, called ganglion cells, make the muscles push. These nerves connect directly to the celiac ganglion, which also innervates the stomach, liver, gallbladder, spleen, kidney, small intestine, and the ascending and transverse colon. The celiac ganglion, in turn connects to the spinal cord (and the brain) through nerve roots that exit the spine in the lower thoracic and upper lumbar region. Pressure on these nerve roots caused by misalignment of the vertebrae in this area may interfere with the normal function of the bowel as well as other organs of the digestive system." We are fortunate to have a pediatric chiropractor here in Little Rock and visit him every 3 weeks. Initially though, we went twice a week. Watch his video at : http://www.chenalchiropractic.com/ to learn exactly how much having the proper spinal alignment can help. Presley's sphincter tone changed from a "death grip" to normal after the first week.
Glycerin suppository - we have use this only twice. It had limited usefulness for us, but may help others. They make these suppositories for infants to stimulate the distal bowels to move.
Goat's milk - also recommended by our nutritionist. We switched from breastfeeding at 11 months old to goat's milk due to the smaller size of the proteins in comparison to other types of milk. The smaller size allows for easier digestion. Presley had 1-3 goat milk smoothie's with fruit and some spinach added in each day.
Exercise, physical activity - this is a simpler task when they begin crawling and walking. Here is what www.webmd.com has to say: "Exercise helps constipation by decreasing the time it takes food to move through the large intestine, thus limiting the amount of water absorbed from the stool into your body. Hard, dry stools are harder to pass. In addition, aerobic exercise accelerates your breathing and heart rate. This helps to stimulate the natural contraction of intestinal muscles. Intestinal muscles that contract efficiently help move stools out quickly".
Ask your therapist for some core strengthening ideas. Here are some ideas specifically for children. We spent some time on a large exercise ball and follwed some exercises from "How to Teach your Baby to be Physically Superb" by Glenn Doman.
* Vitamin C cleanse and maintenance dose as suggested by Dr Russell Jaffe. Read the protocol here.
* Elimination diet: avoid dairy, gluten, processed foods. Increase fiber.
* Probiotics : also consider prebiotics. Some of the good probiotics that I personally have liked are Seeking Health Probiotia powder, Prescript Assist, Dr Mercola, and most recently is Visbiome.
* Check the thyroid. Constipation can be a side effect of a low functioning thyroid.
* Potato peeling broth with frozen fruit to make smoothies. Potato peeling broth recipe here.
* Magnesium oxide- many moms within the DS community use this. I have not used this yet. It says to give with a full glass of water. Please read more about it before giving.
* Magnesium citrate: Per Dr Aviva Romm:
"is an osmotic laxative — meaning it works the same way as Miralax, by pulling water into the intestines. It is safe in moderation for even young children. A typical dose range is as follows:
- 1–3 years 65 mg/day
- 4–8 years 110 mg/day
- 9–18 years 350 mg/day
I recommend taking it before bed, which will often lead to a soft BM in the morning. It can be purchased in powder form and mixed into a small amount of almond milk or water and taken in a cup with a straw, which is easy for young kids."
* Fruit eze - I have not personally used this, but have seen others recommending it. The website says this: "Fruit-Eze™ fruit blend is a safe, effective, all-natural alternative to laxatives made of prunes, raisins, dates, and prune juice." Warrior Mom Melanie Duncan suggested it and had this to say "Fruit-eze has been wonderful for my son. It is like a jelly (all natural prunes, dates & raisins) and blends easily with his feeds. We started with one teaspoon twice daily, and now (he's 11) we give him one tablespoon in the AM & PM. His BMs are productive, and once or twice daily. With Down syndrome and a fundoplication, he has lower motility, too. Retching/gagging and "leaking" g-tube reduced GREATLY since using it. We now have family members and multiple people online that have also started using it, and everyone has had success with no side effects that has updated me. We blend it with my sons feedings, others blend it with smoothies, add it to yogurt, spend it on jelly, or my mom just eat a spoonful every morning. In addition to Fruit Eze, vitamin C, a small amount of magnesium, my son also takes this probiotic (Klaire Labs Saccharomyces Boulardii Veggie Capsules) daily. Amazingly productive BMs after years of miralax and still having issues."
* Castor oil packs - "A castor oil pack, when placed on the skin, is thought to enhance circulation and promote healing to the affected area and therefore, when placed on the stomach, can improve digestion and may relieve constipation symptoms. There has been one small study that looked at the effects of castor oil packs on elderly patients who suffered with constipation, some of whom had been affected for at least 10 years. They monitored the results over a period of seven days and found that, in short, castor oil packs may be used for controlling symptoms of constipation such as reducing the need to strain and the feeling of complete evacuation after a bowel movement." as seen here in this article.
Wellness mama shows how to make castor oil packs here.
* Senna: (such as in Smooth Move herbal tea) Dr Aviva Romm:
"Senna is approved by the FDA for children 2 years old and older. It is a strong stimulating laxative so I don’t recommend it for daily use, but it does come in handy in a pinch. To cut down on the belly cramping that sometimes comes along with using senna, use a tea bag combination that contains ginger and fennel seeds, or peppermint leaf. Smooth Move by Traditional Medicinals is a good example of a tea blend you can use. Gaia Herbs Natural Laxative Tea is another."
* Flax seeds - per Dr Aviva Romm:
"up to 1 tsp. ground twice daily for children aged 2-7, and up to 1 TBS ground twice daily in children over 7, is an effective bulk laxative that can be mixed into a smoothie, mixed into nut butter and spread on an apple of crackers, or mixed into a 4 oz. of water or juice."
RECIPE: Fruit Balls
Rich in nutrients, fruit balls are a healthy treat for kids of all ages and a great laxative. They are really sticky, so get kids to brush their teeth after eating them to prevent cavities.
- ½ cup raisins
- ½ cup prunes
- ½ cup almonds
- ½ cup shredded coconut or almond meal
- ¼ cup flaxseed
To prepare: Slowly grind all ingredients except the coconut or almond meal in a blender or food processor. Add a little water as needed to form a slightly sticky dough. Form into 2-inch balls and roll in the coconut or almond meal. Have fun creating your own variations. Kids love making these, too.
Chia seed is also mildly laxative. There are some wonderful chia seed puddings online. Chia seed should be used in a ratio of 8 parts liquid to 1 part chia seeds, otherwise it can absorb water from the intestines and add to, not fix, the problem!
Psyllium or plantain seeds can be mixed into smoothies or a small amount of juice, similarly to ground flax seeds."
(Caution with bulking items like chia, flax, psyllium. If you do not increase fluid intake then it can potentially cause blockage as stools will harden even more)
Additional advice from other websites:
Please read Dr Aviva Romm's entire article here. She is a medical physician, mid wife, and herbalism. She believes in trying natural ways in treating her patients first. She has many excellent articles about women and children's health issues.
Andi Durkin has helpful information found here on how serotonin levels in children with DS affect constipation and additional suggestions.
Down Syndrome and constipation: http://www.ds-health.com/constip.htm
Learn more from the Einstein Syndrome webpage about things like senna tea: http://einstein-syndrome.com/health_medical/constipation/
Super Down Syndrome: https://sites.google.com/site/superdownsyndrome/gastrointestinal-issues/constipation
Please feel free to add things that have worked for your family in the comment section below. Remember this information is not intended to be a substitute for medical care from your physician. Please discuss which option is best for your family with your physician.
Many blessing to you,
Robin Tolliver
