By Lisa Ackerman and Linda Betzold
Many children with autism suffer from issues involving the gut and bowel movements (or lack thereof). Not a meeting goes by, nor a phone conversation, that does not involve the question, “how are your child’s poops?”
Many TACA families take great care in discussing, analyzing and fretting over their child’s poops. (So you are not crazy. Join the club!)
Moving bowels daily is a key component of good health. There are issues to address if a child fits one or more of the following:
- Has loose bowel movements that happen too quickly after eating (less than one hour, for example).
- Has bowel movements two, three, four or more days apart; they are not stooling often enough.
- Bowel movements contain undigested food particles that are recognizable in the toilet or diaper.
- Has a bloated belly beyond age two.
- Performs self-stimulatory behaviors such as toe walking, flapping, or posturing just before or while stooling (posturing appears to provide comfort and may include applying pressure to the abdomen by leaning against a blunt object, like the arm of a sofa, therapy ball, or mom’s knee).
- Alternates between constipation and diarrhea.
- Produces stool that has a very odd odor, color and/or texture.
- Has lost weight, fallen behind, or hit a plateau on his/her growth chart.
- Has been unable to potty train past a developmentally appropriate age.
- Posturing or pain during bowel movements (squatting, leaning over with chest on lap, crying/screaming, etc. Some children become very hyperactive prior to a bowel movement. Some children posture in order to sleep at night; they may sleep laying over a therapy ball or face down curled up with knees under chest.)
If the bowels are not moving daily, it can be toxic to overall health, as well as damaging to the gut and painful for the child. If a child on the spectrum is experiencing any issues with bowel movement, it is critically important to find a doctor to assist. In addition, for all children, eating a balanced diet including a good amount of water, fiber, and a variety of foods, including fruits and vegetables (or fruit and veggies in disguise!) is very important for good health. Limit intake of sugar, fast foods, too many foods from one food pyramid category to the exclusion of others, and foods with little nutritional value.
Proper medical testing can also assist in identifying the problems with bowel movement and other gut-related issues.
Different kinds of constipation
When we think of constipation, we usually think of stool that looks like little, hard rocks and is really hard to push out. That kind of constipation usually resolves with more water, fruit, veggies, and fiber in the diet. This isn’t usually the kind of constipation our kids experience. For ASD kids with gut issues, it’s not a matter of texture; it’s a matter of frequency. Their stool is often mushy; it should be easy for them to pass. But they often have to strain and work very hard to get this mushy stuff out. Most of the time our kids are not having daily bowel movements, even though the stool is soft or loose and should be easy to pass every day. Instead, our kids may only poop once a week! This is called soft stool constipation, and this is the kind of constipation that is most common in our kids. It is the sign of an unhealthy gut.
Please note: Every child is unique; talk to your doctor about the options that best fit your needs, as well as for guidance on supplementation and dosing.
- Dietary intervention. Try GFCFSF for sure. Further intervention may be necessary, so you may also want to consider a rotation diet, the Specific Carbohydrate Diet, or in extreme cases, an elemental diet.
- IgE and IgG food allergy testing can give you clues about what other foods may be causing trouble; eliminating those foods from the diet may alleviate constipation.
- Digestive enzymes may help kids with constipation. Kirkman, Houston, and Enzymedica are brands that are well liked by parents. Some kids cannot tolerate supplemental digestive enzymes, so some families use “green juice.” Take fresh organic veggies or fruit and puree them in a food processor or blender. Then give one tablespoon with each meal. The naturally occurring enzymes in the raw food will help digestion. Talk to your doctor about dosing.
- Cook with flaxseed meal or powder,1 – 4 tablespoons per recipe (i.e., 12 muffins, 1 loaf of GFCFSF bread, etc.)
- Can you say Fruit Eze? This product is a prune and fruit paste that works as a great mock jam on GFCFSF toast, sandwiches, pancakes, or waffles.
- Epsom salt baths. Use a cup of Epsom salts and a pinch of aluminum-free baking soda in the tub every night. Drinking the bath water is okay if you are constipated.
- OxyPowder is oxygenated magnesium that can have powerful results.
- Fruit and more fruit! Bake with pureed fruit or baby food if fruit textures are not tolerated. (Use 2 – 4 tablespoons per recipe. It will give a nice texture. Be sure to cut back on other water/liquids in the recipe.)
- Drink lots of filtered water during the day, and then drink some MORE water! Bottom line — make sure kids are drinking enough water, especially during hot weather! The rule of thumb is to consume one quart of water for every 50 pounds of body weight.
- Exercise is very important to someone with constipation. The more you move, the more your bowels move!
- Magnesium citrate can be your friend (or your enemy if you overuse). Take the recommended daily allowance (RDA) based on the weight and age of the child. It can help soften the stool and make it easier to pass. See the Physician’s Desk Reference (PDR) below for dosing and supplement information.
- Vitamin C is a helpful antioxidant, and it can also help keep the stool soft and easy to pass. Use the buffered vitamin C; it’s easier on the tummy.
- Make sure your child is getting enough healthy fats in his/her diet. Some examples are fish oil, cod liver oil, evening primrose oil, coconut oil, walnut oil, almond oil, MCT oil, and olive oil. (Be careful when you cook to only use oils that will not become trans-fats when heated; you may safely heat coconut oil and palm oil.)
- Probiotics (the good bacteria that should live in your gut) can help with constipation. Make sure they are dairy-free. It’s good to rotate and use different strains. Some need to be refrigerated, and some don’t, so check the label. Prebiotics (the stuff that feed the good bacteria) can also be helpful.
- Fermented foods have good live bacteria in them and can really help keep the poop moving. GFCFSF yogurt and kefir can be made or bought. So Delicious makes a coconut yogurt in three flavors that is GFCFSF and really tasty! Body Ecology Diet has a good kefir starter with instructions for making it; you can make it with young coconut water, almond milk, rice milk, or hemp milk. Sally Fallon’s book Nourishing Traditions has instructions for making kombucha and fermented veggies, like sauerkraut. Make sauerkraut from red cabbage (it’s easy!) and puree a tablespoon in a half-cup of apple sauce. It will turn a great pink color and taste really good. No kidding! Freeze it and make popsicles.
- Smooth Move Tea by Traditional Medicinals is available at health food stores. It can be used for a period of time to help a child have daily bowel movements. Check the label for instructions from the manufacturer.
- Herbs may help, including but not limited to senna, slippery elm, cascara sagrada, rhubarb root, yellow docket, licorice, black walnut and Oregon grape. Colon Clenz by BodyGold is a combination of herbs designed to help constipation. Senna comes in a liquid form; Senna Relief Syrup from Major or Senexon Syrup from Rugby/Watson may be helpful. Check the label for ingredients your child may not tolerate.
- Milk of Magnesia is GFCFSF (always check labels, because ingredients can change). It works gently and should not cause cramping.
- Some supplements can cause constipation (producing more hard, solid stool), including calcium, 5-HTP, and iron. When starting or increasing these supplements, watch the bowels carefully and talk to your doctor about changing the amounts or adding supplements to keep stool soft and easy to move.
- Dulcolax is an over-the-counter medication that causes motility (muscle action of the GI tract) to kick in. It is an extremely SMALL pill that can be taken, and voila, poops be happening. Please note that according to the manufacturer, this pill should not be crushed before taking it. It needs to dissolve in the small bowel, not the stomach. It also contains red dye and can cause cramping for some individuals.
- Aloe vera is great stuff for the GI tract. George’s Aloe, found at Mother’s, Whole Foods, and online, is a liquid that has no taste or smell. So it’s easy for our kids to take and can help get those poops moving. Typically two ounces twice a day will do the trick.
- Fiber can help with constipation. Be careful with fiber; your child must be drinking enough water with it or it may backfire on you! Some brands families have used include Fibersure, ClearFiber, and TruFiber. Always check the ingredients on the label, they change on occasion and sometimes may contain wheat or soy products.
- Sometimes constipation can be caused by too much yeast or bad bacteria in the gut. Anti-fungal medication or an antibiotic may help relieve constipation. Of course, you must talk with your doctor and get a prescription. The biofilm protocol can make these medications even more effective.
- Bethanechol (also called urocholine) is a prescription medication that increases acetylcholine in the body. Acetylcholine is needed to make peristalsis happen (the muscle action of the gut), and can help some kids with constipation.
- Many doctors prescribe Miralax for constipation; it holds water in the bowel, making the poop soft and easy to pass. When mixed in liquid, it is in every way undetectable, so it is easy for kids to take. Miralax is polyethylene glycol, so do some research and decide if it’s something you want to try.
- Anti-inflammatory and/or immune-modulating medications prescribed by a qualified, informed pediatric gastroenterologist after an appropriate evaluation can help constipation dramatically.
- There are a few things you can try if you are REALLY in trouble. You can try glycerine suppositories, Dulcolax suppositories, or Fleet enemas from the drug store; use a child size or half of the adult size. These are definitely a last resort; check with your doctor first.
If your child is pooping daily and still seems uncomfortable, he or she may not be getting enough stool out every day. It is important to consider these suggestions with your doctor and make sure that your child is having complete and regular bowel movements.
Stool impaction is incredibly painful, and it sometimes happens to our kids. An exam and x-ray of the abdomen (called a KUB) can help diagnose an impaction, which will likely require medical attention. Watch for distended tummies, night waking because of pain, and sometimes dramatic changes in behavior as clues. Sometimes children with stool impaction will produce thin, ribbony stool in the toilet, another clue that there may be an impaction. Children with an impaction may have diarrhea every day or every few days. It can be a little confusing or misleading, but diarrhea is the only thing that can squirt around the impaction. Please see a doctor for help immediately. A good gastroenterologist can make a huge difference in finding and solving the root problems unique to your child.
Frequent diarrhea that occurs once a day (or sometimes nine or 10 times a day!) is a serious medical issue. Many times children will experience diarrhea with a cold, flu, allergy, or other health issue at some time in their lives. If diarrhea continues for a prolonged period of time, such as four or more days, please contact your doctor immediately.
Sometimes kids with ASD alternate between constipation and diarrhea. These children can be dealing with multiple bowel issues, and the pendulum swings back and forth in extreme ways. Finding a balance with diet, natural or prescribed remedies, and working with your doctor is key to meeting your child’s needs.
Possible issues causing the diarrhea could be:
- Too much fruit intake.
- Too much magnesium intake.
- Too much vitamin C intake.
- Too much essential fatty acid intake.
- Too much fiber intake.
- Drinking too much bath water containing Epsom salts.
- An allergic response to food(s) or additive(s).
- The presence of undesirable parasites or bacteria in the gut.
- Inflammation in the intestines
- And other issues!
Things that may help alleviate diarrhea:
Some of the interventions used to treat constipation are also effective with diarrhea, including:
- Dietary intervention, beginning with GFCFSF and moving on to a rotation diet, the Specific Carbohydrate Diet, or an elemental diet.
- Eliminating problem foods found in IgE and IgG food allergy testing.
- Digestive enzymes or “green juice.”
- If your child has experienced diarrhea since increasing fruit/veggie, fiber, magnesium citrate, vitamin C, or essential fatty acid intake, consider adjusting doses.
- In some cases, probiotics and prebiotics can help diarrhea the same way they help constipation.
- Fermented foods can help diarrhea the same way they help constipation. By getting a lot of good live bacteria into the GI tract, you crowd out the bad “bugs.”
- Colostrum and transfer factor can be helpful in getting rid of diarrhea if your child’s dysregulated immune system is triggered by food.
- Anti-inflammatory or immune-modulating medication prescribed by a qualified, informed pediatric gastroenterologist after an appropriate evaluation can help diarrhea dramatically.
BOTTOM LINE: Prolonged diarrhea and/or constipation are NOT acceptable for any child and require medical treatment. It is time to seek medical attention if these symptoms continue for more than four days.
More complex issues require more complex action
Living with prolonged, untreated gastrointestinal issues is not recommended. It is painful and impacts overall health in a serious way. If a child still has consistent, serious GI issues despite dietary intervention, allergen removal, supplementation, and other remedies, a trip to a qualified, informed gastroenterologist is required, particularly if the child is not making progress in traditional therapies (ABA, Floortime, speech, OT, etc.). In addition to the GI symptoms mentioned earlier, parents of children with the following ongoing issues should consider a trip to a specialist:
- Unexplained tantrums
- Self-injurious or aggressive behaviors.
- Sleep issues — difficulty falling asleep, waking during the night
- Recurring gut imbalance (yeast, bacteria or parasites) that does not respond to treatment
Remember, a verbal child may or may not tell you that his/her tummy hurts. A child with ASD who does not complain about abdominal pain does not necessarily have a healthy GI tract.
Find a specialist
Unfortunately current and traditional gastroenterology standards and testing may reveal that a child on the spectrum has no problems. It is important to note that treating GI issues found in autism spectrum kids is a new area for most gastroenterologists. Parents may need to seek help well outside their local area in order to get appropriate evaluation and treatment.
Who Are The Best Doctors?
The best pediatric gastroenterologists that understand and treat the GI issues of children with autism are:
Dr. Arthur Krigsman
Pediatric Gastroenterology of New York and Texas
He has two practices: one in Austin, Texas and one in Far Rockaway, New York on Long Island. Does not take insurance.
You may contact both practices by calling 718-327-2200.
Dr. Timothy Buie
Massachusetts General Hospital for Children, Lurie Family Autism Center/LADDERS. Takes insurance.
He practices in Lexington, Massachusetts and may be reached at 781-860-1700.
What happens at gastrointestinal assessments?
A complete assessment includes:
- General patient intake information
- Physical examination
- Parent’s written narrative of child’s gastrointestinal and developmental history
- Review of all current medical issues — signs and symptoms you see in your child
- Results of any previous testing
- Gastroenterologist may request further testing (blood, urine or stool) based on child’s issues and history
- Colonoscopy, EGD (upper endoscopy), and pill cam study (tiny camera in a capsule that takes photos of the small intestine) study may be recommended in order to biopsy and diagnose child’s particular issues
- Appropriate procedures will be scheduled
- Phone consultation afterwards to review biopsy results and map out a detailed treatment plan.
Since most families travel a significant distance to see Dr. Krigsman or Dr. Buie, most of the preliminary work can be done by phone, fax, or email. A physical exam can take place when the family travels for the endoscopic procedures.
What does the procedure look like?
Typically a family flies into New York, Austin, or Boston on a weekend. The initial consult takes place on Monday with the procedures and biopsies on Tuesday. The child will stop eating food and take in only clear liquids starting Sunday night. A bowel prep to clean out the GI tract is done on Monday night. Families can usually leave on Wednesday morning, after receiving doctor’s approval.
How to prepare a child for the procedures
- Talk to other families who have gone though this process; get their feedback and advice. Mentors are available through TACA. (Parents get especially worried about the period of time their child cannot eat solid food and the bowel prep process. It’s not as bad as it sounds; talk to other families who have gone through it.)
- Prepare your child using social stories about what will take place and discuss everyone’s expectations. Plan a special reward to be given after the procedures are over. TACA has several social stories for this procedure depending on the child’s age and comprehension level.
How soon can my child eat after the procedures?
- If no pill cam study is being done, a child may begin to eat and drink in recovery before leaving the outpatient If a pill study is being done, the child may drink clear liquids sparingly during the first three hours after pill cam is activated. The child may then drink clear liquids liberally for the next five hours after that. (Pill cam recording device battery lasts eight hours.) Eating solid food may resume eight hours after pill cam is activated.
How soon after the procedures can I leave?
- Once your child has woken up sufficiently from anesthesia and can hold down liquid, you can leave the outpatient You can most likely travel home the next day, after the doctor’s approval.
How long do the procedures last?
- Usually procedures last one to two hours, depending on how many and which ones are being done.
What is involved in doing a pill cam study?
- The pill cam is a tiny camera with a light inside a capsule about the size of a 1,000 mg cod liver oil capsule. A child can swallow the pill cam or it can be placed in the first part of the small intestine (duodenum) during upper endoscopy. The pill cam takes two photos per second for eight hours and gives visual information about the entire small intestine. It does not have the ability to take biopsies. A recording device that records the photos for eight hours is belted at the child’s waist. The pill cam battery lasts eight hours, and then the study is complete. The pill cam will pass through the colon and leave the body in a bowel movement. You do not have to worry about retrieving it. It can go down the toilet or end up in a diaper.
How can I afford these procedures?
- Check the TACA website for financial ideas/sources. Dr. Buie offers limited assistance to families in great need. This depends on funding availability and the family’s financial qualifications for the programs. Contact the LADDERS Foundation for more information.
My child can swallow a pill. Can we just do the pill cam procedure and skip the anesthesia and endoscopic procedrues?
- The pill cam only gives you a visual picture of the small intestine. It provides no information about the esophagus, stomach, or large intestine. By only doing the pill cam, you could miss many other issues the child is having. Also, the pill cam only provides visual information; it cannot take biopsies. With the endoscope the gastroenterologist will be able to get into the first and last part of the small intestine to do biopsies (the duodenum during EGD and the ileum during colonoscopy). Usually at the first visit, all three procedures are recommended.
Can we skip the procedures and just try some medication and see if it helps?
- It is never appropriate to treat without confirming a diagnosis. It’s not done in any other area of medicine, unless the signs and symptoms guarantee the diagnosis. The same group of signs and symptoms can be the result of a variety of different conditions that will require very different treatment. For example, if a child is vomiting frequently, it could mean many things. The vomiting could be caused by a severe food sensitivity, severe reflux, stomach inflammation, small bowel inflammation, or some combination of these things. The endoscopic procedures with biopsies and the pill cam study are needed to arrive at the correct diagnosis. Good diagnosis leads to appropriate treatment. That’s the road to healthy, comfortable kids.
Should I be concerned about my child undergoing general anesthesia?
- Your child will need to have general anesthesia in order to perform colonoscopy and upper endoscopy. Children with autism often have trouble processing medication. Anesthesia drugs are no different. In order to educate yourself about anesthesia and make the best choices for your child, please read Anesthesia and The Autistic Child by Sym C. Rankin, RN, CRNA, https://www.autism.com/pro_anesthesia. Talk to your doctor about any special issues your child may have when it comes to anesthesia. A pre-procedure consultation with the anesthesiologist is customary; this is the time to bring up your concerns and map out an appropriate plan for your child.
What do treatments look like?
Treatments greatly depend on observations during the endoscopic procedures and the biopsy results. Common treatments for the conditions found in our children include:
- Dietary intervention (GFCFSF, Specific Carbohydrate Diet, elemental diet, etc.)
- Digestive enzymes, either prescription (Creon or Zenpep) or over-the-counter (Kirkman, Houston, Enzymedica, etc.) may be recommended
- Anti-inflammatory medications (Pentasa, Sulfasalazine, etc.)
- Immune suppressing or modulating medications to address inflammation, which is often autoimmune (Prednisolone, Entocort, Rhinocort, Nasonex, etc.)
- Acid-suppressing medications (Prevacid, Zantac, etc.) to address gastroesophageal reflux disease (heartburn)
Regular gut cleanouts can be a helpful thing. Every six to 12 months, take a day to eat lightly and “clean house” in the GI tract. The following is a standard pediatric cleanout protocol that has worked for my family for years.
- You’ll need liquid magnesium citrate and Fleet enemas or Dulcolax suppositories from the local pharmacy
- Eat lightly, drink LOTS of water or clear liquid, and give two doses of liquid magnesium citrate two to three hours apart in the early afternoon
- Give a pediatric Fleet enema (or half of adult enema) or a Dulcolax suppository that evening (three to four hours after second dose of liquid magnesium citrate)
You can give another pediatric Fleet enema or Dulcolax suppository the next morning to complete the cleanout.
A Parent’s Story About Their Son
Watch video of Dr. Arthur Krigsman or Dr. Tim Buie giving presentations on the bowel disease common in kids with ASD. You can watch some online for free, or purchase DVDs as well.
NOTE: IF A SYMPTOM CARRIES FEVER, LONG PERIODS OF IRREGULAR BOWEL MOVEMENTS WHICH CAN LEAD TO DEHYDRATION OR OTHER ISSUES, EXTREME CHANGE IN BEHAVIOR, OR LOSS OF SLEEP OR APPETITE FOR AN EXTENDED PERIOD OF TIME, PLEASE CONTACT YOUR DOCTOR IMMEDIATELY.
Disclaimer: Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources, and TACA doe not independently verify any of it. The views expressed herein are not necessarily TACA’s. Nothing in this document should be construed as medical advice. Always consult your child’s doctor regarding his or her individual needs.
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