Autism and GI-related Sleep Disturbances: Q&A with GI Specialist Tim Buie

October 10, 2018

Dr. Buie is the director of pediatric gastroenterology and nutrition at MassGeneral Hospital’s Lurie Center for Autism, in Boston. The center is one of 14 sites in the Autism Speaks Autism Treatment Network.

Disclaimer: The following information is for educational purposes only. It is not intended to diagnose or treat, nor should it take the place of personal consultation with a medical professional. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment. Talk with your healthcare provider about any questions you may have regarding a medical condition.

Question: I have a 7-year-old autistic son. He has had reflux from birth, as he was born prematurely. We give him licorice, one fourth of the tablet on an empty stomach in the morning. We also give him probiotics and digestive enzymes. He is on this treatment for the past three years. He is eating well. But sometimes in the night he wakes up and asks for water and has sleeping challenges. He also tries to cough and spits up sometimes, most often in the morning. Can you please suggest me the possible cause for it? Is it reflux or something else?

Dr. Buie: Although we need to consider other possibilities, reflux can cause the symptoms you describe. Reflux is common among children born prematurely. Many outgrow reflux symptoms and the spitting up then resolves. However, reflux symptoms persist for other children.

It seems clear you’re doing your best to stay with natural products to manage this. Hopefully the product you’re using is licorice root with DGL (deglycyrrhizinated licorice). This natural product can thicken the protective mucus barrier in the esophagus and stomach. However, other licorice products should be avoided as they can cause high blood pressure and other unwanted side effects.

We don’t have good research to document whether a licorice supplement can heal reflux irritation in the GI tract. I have many patients who have used this, and if the product helps comfort, I am not opposed to it.

At the same time, it’s important to avoid reflux irritation advancing to injury of the esophageal lining (esophagitis). If your son’s symptoms continue despite your treatments, it’s important to work with his physician to investigate other causes or intensify treatment.

For instance, your son might benefit from a stronger reflux treatment such as an H2-blocker or a proton pump inhibitor. We use these treatments cautiously and want to avoid long-term use. However, in the short term, they can help relieve irritation and guide further treatment.

Digestive enzymes can likewise be helpful for certain GI issues like malabsorption, gassiness and diarrhea. However, in other situations such as esophagitis, enzymes can make matters worse. So it can help to hold back on using the enzyme to see if this improves symptoms.

Question: My son is 13 years old, 6'1" and around 235 pounds. He has had bowel issues since day one. He has been on Miralax and fiber supplements three times a day just to have a daily bowel movement. They are very large and painful. He has a limited diet (big surprise), but he has been very active with walking and getting on treadmill/elliptical machines on a regular basis. He was diagnosed with distended bowels at age 6. What can we do to make things easier for him to go? If he misses a day of supplements, he ends up leaking around an obstruction.

Dr. Buie: It feels like you are on the edge between success and failure. So first and foremost, it’s important that I not to make a suggestion that would make your son’s condition worse. Often, problems with distention and tone of the bowel continue even after one has achieved regularity. It’s like that stretched balloon that can’t get its original tone back. These children are candidates for medicines that can enhance contraction of the bowel.

Neither Miralax nor fiber works on contraction of the bowel. In fact, fiber may add bulk to an already large stool. So adding agents such as senna or bisacodyl may help contraction and keep the bowel less distended. This can allow tone to return to the bowel. I encourage you to discuss this option with your son’s doctor, who may want to add these medications to those your son is already taking. You will want to tailor the dosage to achieve success with a minimum of cramping.

This kind of fine tuning is often best achieved by working with a specialist. So a consult with a gastroenterologist could be helpful. When talking with your son’s doctor or doctors, I encourage you to be clear that regularity is not an adequate endpoint for him; comfort is.

Also See Autism Speaks ATN/AIR-P “Guide for Managing Constipation in Children with Autism,” available for free download.

Question: My son who is 9 years old has had diarrhea off and on for seven months. He has gained about 20 pounds and lately has been complaining of stomach pain near the chest and belly button. His stomach makes gurgling loud noises. For the past three days, he has hardly eaten. He also has had a bad cough for the past few months. I've taken him to his primary care doctor and submitted a request to our insurer for a GI specialist. We even took him to ER for the lack of eating and abdominal pain, and they did a CT scan that came back normal. Their thought was to rush the approval for the GI [specialist] from our health insurer.

Dr. Buie: The symptoms you describe can stem from an array of different problems. Certainly, acid reflux can cause upper belly and chest pain, cough (especially nighttime dry cough) and poor eating. Without treatment, some individuals will try to buffer the painful stomach acid by drinking or eating frequently. I call this “eat to treat.” While waiting to see a GI doctor, I suggest talking with your son’s primary care physician about trying an antacid treatment. How your son responds to antacids is important information that will help guide the gastroenterologist once your referral is approved.

Q: Our son has trouble pushing poop. He tends to go a little at a time and says "it’s stuck." He has low muscle tone. Could these issues be related?

Dr. Buie: Yes, low muscle tone can affect a number of muscles involved in passing stool. These include the muscles of the abdominal wall and buttocks. As pediatric gastroenterologists, we often see low muscle tone as an underlying factor in constipation and difficult defecation. Stool softeners may help your son pass stool more easily. As in my response to the second question, you and your son’s doctor might also consider treatments that enhance contraction of the bowel.

Question: My daughter is 22 months old and just diagnosed with autism. She has struggled with passing bowel movements since she was 9 months old. We are always giving her Miralax and powder fiber in her Sippy cups to help make it easier for her to go. We have tried prunes juice and fruit, but she won't drink or eat them. She struggles when we don't do the fiber or Miralax, but then has diarrhea when she is taking it. Where can we find balance?

Dr. Buie: This is the all-too-familiar battle of managing constipation: You need to help your child pass stool; but in the process, it’s common to overshoot the mark. Like your daughter, many children with autism have diet selectivity that limits fiber. Some also consume a lot of dairy products. Both tendencies can contribute to constipation.

In these situations, I often encourage fiber. It will help hold liquid in the stool, while avoiding the watery outcome that can result from Miralax alone. A number of fiber supplements, including Benefiber and Citrucel, can be dissolved and drunk. These can be used in combination with Miralax to provide balance, as it sounds like you are doing. Getting the balance right for any one individual requires adjustments. I recommend discussing this with your daughter’s healthcare provider.

Working with your daughter’s diet to increase fiber can help as well. A nutritionist experienced in working with children who have autism and diet selectivity may be able to guide you.

Also see the Autism Speaks ATN/AIR-P tool kit “Exploring Feeding Behavior in Autism,” available for free download.

Q: My son has trouble pushing out poop, so he will walk around trying to hold it in. He also has chronic bad breath. Could both be from GI issues?

Dr. Buie: Foul breath can stem from a number of issues that are common among children with autism. I recommend first evaluating for dental issues. If dental issues are ruled out, I next suggest evaluating for acid reflux. Foul breath is also common among children who bring food back up from the stomach. We call this regurgitation or rumination.

And yes, chronic constipation can produce foul breath. If your son is withholding stool, it may help to work with a behavioral therapist. The therapist can help introduce a schedule of regular toilet sitting. This can be combined with a stool softener or similar treatment to help achieve success. Positive reinforcement for successful toileting can encourage future efforts.

Behavioral intervention can likewise be very effective if your son is among the many children with autism who have comfort issues around how and where they pass stool. Some won’t sit on a toilet but will ask for a diaper and go into a private place such as the bedroom to pass stool. Such a child is technically “toilet trained.” In other words, he has control over his bowel movements. He just isn’t using the toilet the way you want. If this is the case, a behavioral program can be very helpful.

That said, I always want to make sure a child is “able” to succeed before starting a behavioral approach. So I encourage you to work with his doctor to make sure he can pass stool as regularly and comfortably as possible.  

Q: My daughter is 4 years old and has constipation since she was a baby. She is on the autistic spectrum with ADHD and sensory disorders. She was on Miralax for a year, and finally I switched her to magnesium supplement. It’s getting better though I’m still trying to find just the right dose. Still, it’s a daily battle, and when she does go, it's a 20 to 30 minute process. Is this just normal for her?

Dr. Buie: When a child has lifelong constipation, I think it’s important for a qualified health provider to evaluate for possible anatomic issues. Hirschprung’s disease, for example, is a rare condition, present at birth, which involves abnormal development of the lower intestinal nerves. Many newborns with this condition have delayed passage of their first bowel movement. Others develop constipation and bowel distention in infancy.

More commonly, chronic constipation that begins in infancy relates to food allergy – particularly milk allergy. I recommend talking with your daughter’s doctor about this possibility.

The list of other possible issues is long, which is why I would strongly encourage your daughter to be evaluated by a pediatric GI specialist. As I mentioned in an earlier response, the goal of treatment should go beyond regular bowel movements to include comfort.

Comfort may well follow if you have gotten to the point where your daughter is passing stools daily. However, I remain concerned about your description of her prolonged pushing to evacuate. I would work towards a goal of reducing the time it takes for her to go.

One caution on using magnesium: It can become toxic in children who have kidney problems. So be sure to discuss this with her healthcare provider. Also make sure that the magnesium product you are using is free of aluminum.

You also mention that your daughter has attention deficit issues. Often, children with attentional issues have difficulty keeping focused on “finishing the job.” Many of these children go to the toilet regularly, but fail to completely empty their bowels. Instead they get off the toilet as soon as they feel the relief from passing the first bit of stool. If this is the case with your child, she may have leakage of stool between bowel movements because she fails to sense that her rectum is full.

As a pediatric gastroenterologist, I treat this issue just as I would treat hard and infrequent stools. However, a general pediatrician may fail to recognize the problem because your daughter is “regular.”

Q: My son, now 2 years old, has had a hard time passing bowels since he was 2 months old. He's had X-rays. He’s had to be hospitalized and "flushed out" twice. We have completely changed his diet twice. We’ve taken away dairy and gluten. He’s had enemas, and he takes Miralax in his cup. Nothing works for him! He was diagnosed with autism shortly after he turned 2. Are his bowel issues related to his autism? What else can I try for my poor baby?

Dr. Buie: Constipation is the most common GI problem in pediatrics. Studies done by the Autism Speaks Autism Treatment Network and others confirm that it is even more common among children with autism.

I believe that autism adds difficulty to managing the constipation. For instance, many children with autism are on self-restricted diets or diets that we initiate trying to help. Milk and gluten restrictions, for instance, often result in increased amounts of foods like rice products, which can worsen constipation. If the diet restrictions you’ve tried have clearly helped your son, it would be fair to continue. If they haven’t, you may want to consider adding back the foods you eliminated.

Also many children with autism have sensory-processing issues. Some are less sensitive to certain types of pain and extra-sensitive to other physical sensations. The result can be a child who tries to avoid passing stool or who does so only in certain “comfortable” positions like standing on a toilet rather than sitting. It can also result in a child who only passes stool at night while asleep.

Further evaluation may be warranted if your child continues to experience pain with bowel movements. For instance, an examination can reveal whether he has cracks in the skin at the anus. A local strep infection can cause fissures and a red ring at the anus and is very painful.

Other times, we see injury to the anal sphincter muscle caused by chronically passing large and hard stools. So while achieving regularity is important, treatment needs to focus on pain reduction at the same time. 

Q: Is it normal and healthy to have consistently fluro green and black poo, from one extreme to the other? Does it have to do with lack of iron, coinciding with weight loss and increased sensory issues? What chromosomal duplications or deletions present with both autism and GI symptoms?

Dr. Buie: When it comes to the color of stool, I worry about three colors: Red stools can indicate bleeding. White stools suggest a problem with the liver drainage. And black stools can indicate bleeding higher in the GI tract. So the black stool you describe warrants testing for the presence of blood. This can be done by your healthcare provider.

Otherwise, the changing color is likely due to differences in the amount of bile salts in the stool or how fast the stool passed through the intestinal tract. In addition, certain supplements such as iron or bismuth can make the stool black. So can certain foods such as beets as well as food coloring.

I am concerned about the weight loss you mention. This is serious and should prompt your son’s doctor to investigate whether it could relate to an underlying GI problem. Celiac disease, for instance, is a condition associated with weight loss. Celiac disease also involves gluten food sensitivity. I would recommend that you talk with your son’s doctor about evaluating him for this condition.

A number of rare genetic conditions can involve both autism and GI problems. For example, our group at Massachusetts General Hospital collaborated with investigators at Vanderbilt to describe a change in the MET gene associated with autism and GI symptoms.

However, the vast majority of GI problems do not involve genetic defects. So we don’t typically pursue a genetic work-up for GI problems and autism alone. You may want to confer with an autism specialist to discuss whether there are additional reasons to have genetic testing for your son.