Complex Gastrointestinal Issues in Autism

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Complex gastrointestinal issues in autism require more complex action. When your child is still suffering despite dietary intervention, supplementation, and remedies mentioned in the Constipation and Diarrhea article, it is time to find a qualified gastroenterologist.

When Should I Consider a GI Specialist for My Child?

Behavior is communication.  If your child with autism is having frequent meltdowns, they may be due to chronic gastrointestinal pain that your child cannot express any other way.

Parents of children who have any of the following ongoing issues should consider seeing a qualified, informed pediatric gastroenterologist:

  • Chronic diarrhea and/or constipation
  • Distended, bloated tummies, especially after the age of two
  • Stool that has an odd texture, color, and/or odor
  • Undigested food that is visible in the stool
  • Self-injurious behaviors or aggression towards others
  • Unexplained tantrums
  • Posturing behavior — applying pressure to the abdomen by leaning over an object such as the arm of the sofa, therapy ball, mom’s knee, etc.
    • Some children posture in order to sleep at night
    • Some children posture when trying to have a bowel movement
  • Pain during the bowel movement process
  • Sleep issues — difficulty falling asleep, waking during the night
  • Seizures
  • Not making progress in therapeutic interventions (ABA, Floortime, speech, OT, etc.)
  • Weight loss or failure to grow/gain weight for more than six months
  • Recurring gut imbalance (yeast, bacteria, or parasites) that does not respond to treatment
  • Failure to toilet train past a reasonable age

Please 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.

"Behavior is communication. Frequent meltdowns may be due to chronic gastrointestinal pain that your child cannot express any other way."

Finding and Working with a Specialist

Not only does living with prolonged, untreated gastrointestinal issues impact a person's overall health, it's also painful.  For this reason, we strongly recommend that all children with ongoing GI-related problems undergo a consultation and complete evaluation with a qualified, informed pediatric gastroenterologist.

Please consider the following tips for finding and working with a specialist:

  • Ask fellow autism parents and friends if they have a favorite gastroenterologist who thinks outside of the box and is a good listener.
    • Read our article about Finding a Doctor. Many of the tips in that article also apply to finding a specialist.
  • Before your appointment, consider what you want from the gastroenterologist.
    • Familiarize yourself with GI issues common to autism by reading the articles at the bottom of this page by Dr. Buie and Dr. Krigsman (two doctors who are very familiar with treating complex gastrointestinal issues in autism).
      • If you bring a copy of these articles to your appointment and know what to ask for, it can make the process easier.
  • During your appointment with the gastroenterologist, talk to them about recent studies linking autism and GI disorders.
  • It is important to note that most gastroenterologists don't have much experience treating GI disease in children with autism.
    • Because of this, you may need to seek help well outside of your local area in order to get an appropriate evaluation and treatment plan.

What Happens During GI Assessments?

Typically, a complete assessment for a child with complex gastrointestinal issues includes the following:

  • General patient intake information:
    • Parent’s written narrative of child’s gastrointestinal and developmental history.
    • Review of all current medical issues, including signs and symptoms you see in your child.
    • Review results from any previous testing and treatment.
  • Physical examination
  • Depending on your child's issues and history, the gastroenterologist may:
    • Request additional lab testing (KUB, blood, urine, or stool).
    • Discuss diagnostic procedures to obtain biopsies and get a better understanding of what's triggering your child's symptoms, specifically:
      • Colonoscopy,
      • Upper endoscopy (EGD), and
      • Pill cam study (tiny camera in a capsule that takes photos of the small intestine).
    • Request a follow-up phone consultation or appointment to review any lab results and map out a detailed treatment plan.

Complex GI Issues Common To Autism

The following is a list of complex gastrointestinal issues commonly seen among children with autism:

  • Lymphoid nodular hyperplasia throughout the GI tract (swelling of lymph nodules)
  • Various types of inflammation in the esophagus (usually eosinophilic; sometimes Barrett’s Esophagus)
  • Gastroesophageal reflux disease (GERD)
  • Various types of inflammation in the stomach (sometimes ulcers)
  • Various types of inflammation in the small intestine (sometimes ulcers)
  • Inflammation in the large intestine ranging from mild colitis to ulcerative colitis
  • Sometimes inflammatory polyps are found in the GI tract

What Do GI Treatments Look Like?

Treatments for complex gastrointestinal issues in autism depend heavily on observations during the endoscopic procedures and the biopsy results. Common treatments for the conditions found in our children include:

  • Dietary intervention:
    • Gluten-free, dairy-free, and soy-free (GFCFSF); Specific Carbohydrate Diet; elemental diet, etc.
  • Digestive enzymes:
    • Prescription: Creon or Zenpep
    • Over-the-counter: Kirkman, Houston, Enzymedica, etc.
  • Probiotics
  • 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, like Prevacid, to address gastroesophageal reflux disease (heartburn).

Common Questions Concerning Endoscopic Procedures

If your child is suffering from complex gastrointestinal issues, their gastroenterologist may need to perform an endoscopy to examine their digestive tract and obtain biopsies for lab testing. The following are answers to some frequently asked questions about endoscopic procedures.

How will my child handle these procedures?

Because each child is unique, it's hard to know for sure. That said, we do know that a little preparation goes a long way! To pave the way for a smooth procedure, you could:

  • Use social stories to let your child know what will take place and discuss everyone's expectations.
  • Contact the facility where the procedure will occur to see if they offer pre-op tours (in-person or video).
  • Likewise, let the facility know ahead of time that your child has autism and provide details about any accommodations your child may need.
    • Many places have specialists on staff to support families throughout the entire process – from preparing for the visit through testing, procedures, and post-op.
  • Last but not least, don't forget to plan a special reward to give after the procedures are over!

Should I be concerned about my child undergoing general anesthesia?

In order to perform a colonoscopy and upper endoscopy, doctors will need to place your child under general anesthesia. This concerns many parents because children with autism often have trouble processing medication, and anesthesia drugs are no different. To help you make an informed decision with your child's medical team, please consider the following:

  • Read TACA’s article on anesthesia.
  • Talk to your doctor about any special issues your child may have regarding anesthesia.
  • Above all, schedule a pre-procedure consultation with the anesthesiologist (this is customary) to bring up your concerns and map out an appropriate plan for your child with the anesthesiologist. 

How long do the procedures last?

It varies, depending on how many and which procedures are being done. But, typically, procedures last one to two hours.

How soon after the procedures can I leave?

Doctors usually give approval to leave the out-patient facility once your child has woken up sufficiently from anesthesia and can hold down liquid.

If you are traveling out-of-state for your procedure, doctors typically give permission to fly or drive home the next day.

How soon can my child eat after the procedures?

The answer depends on whether or not your child needs a pill cam study. For procedures without a pill camera, your child may begin to eat and drink in recovery before leaving the out-patient facility.

For procedures that involve a pill cam study, your child will continue to follow a restricted diet, adhering to a schedule similar to the following:

  • After the doctor activates the pill camera, your child can drink clear liquids sparingly for three hours.
  • Then, they may begin drinking clear liquids liberally for the next five hours.
  • Your child can resume eating solid food eight hours after the pill cam is activated (the pill cam recording device's battery lasts eight hours).

What is involved in doing a pill cam study?

The pill cam is a tiny camera with a light inside a capsule that gives visual information about the entire small intestine. Please note, the pill cam cannot take biopsies.

Here are some more details about pill cameras:

  • The pill is about the size of a 1,000 mg cod liver oil capsule.
  • A child can swallow the pill cam, or the doctor can place it in the first part of the small intestine (duodenum) during an upper endoscopy.
  • The camera takes two photos per second for eight hours, recorded by a device worn around your 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.
    • The good news is that you don't have to worry about retrieving it. It can go down the toilet or end up in a diaper

My child can swallow a pill. Can we just do the pill cam procedure and skip the anesthesia and endoscopic procedures?

While the pill cam is an excellent diagnostic tool, doctors usually recommend all three procedures for several reasons.

  • The pill cam only gives visual information. In other words, it cannot take biopsies.
  • Furthermore, that visual information is limited to the small intestine, which means it doesn't provide information about the esophagus, stomach, or large intestine.
  • On the other hand, with the endoscope, the gastroenterologist can access the first and last part of the small intestine to do biopsies (the duodenum during EGD and the ileum during colonoscopy).

So, as you can see, if you only do the pill cam, you could miss many other medical issues.

Can we skip the procedures and just try some medication and see if it helps?

Unless the signs and symptoms guarantee a diagnosis, it is never appropriate to treat without confirming a diagnosis. Furthermore, it is not done in any other area of medicine. This is because the same group of signs and symptoms can result from a variety of different conditions, which may require a completely different approach to treatment.

For example, frequent vomiting can be the result of many things:

  • Severe food sensitivity
  • Severe reflux
  • Stomach inflammation
  • Small bowel inflammation
  • Some combination of all of the above

In order to correctly identify and address which issue is causing frequent vomiting, the doctor needs to know what's going on throughout the entire digestive tract. As mentioned above, the only way to do that is to perform an upper and lower endoscopy in addition to the pill cam study.

While it may be tempting to skip endoscopic procedures in favor of a less invasive approach, it's important to remember that the fastest route to appropriate and effective treatment begins with the right diagnosis. That's the road to healthy, comfortable kids.

Who are the best doctors?

The best pediatric gastroenterologists that understand and treat the GI issues of children with autism are Dr. Arthur Krigsman and Dr. Timothy Buie.

  • Dr. Arthur Krigsman
    • Pediatric Gastroenterology of New York and Texas.
      • Offices are located in Austin, Texas and Far Rockaway, New York (Long Island).
      • You may contact both practices by calling 718-327-2200.
    • Dr. Krigsman does not take insurance.
  • Dr. Timothy Buie
    • He practices at Boston Children’s Hospital.
      • You can reach his office by calling 617-355-6058.
    • Dr. Buie takes insurance, but he is not currently accepting new patients.

There are long wait-lists for Dr. Krigsman and Dr. Buie. Nevertheless, the sooner you schedule, the sooner you will get the help your child needs!

Since most families will need to travel a significant distance to see Dr. Krigsman or Dr. Buie, much of the preliminary work is done by phone, fax, e-mailing photos, etc. A physical exam can take place when the family travels to do the endoscopic procedures.

If you travel to Dr. Buie or Dr. Krigsman for GI procedures, your schedule may resemble something like the following:

  • Fly into New York, Austin, or Boston over a weekend.
  • Sunday night: the child will stop eating food and take in only clear liquids.
  • Monday: in-office consultation visit.
  • Monday evening: the child will take a bowel prep to clean out the GI tract.
  • Tuesday: procedures and biopsies
  • Wednesday: families can usually leave (after receiving approval from the doctor).

Resources:

Further Reading:

All content in this article is for informational purposes only, including links to products and/or websites mentioned. To clarify, TACA does not receive any compensation or commission for providing them.

Furthermore, the information on this page is not a substitute for professional advice, diagnosis, or treatment. For this reason, always seek the advice of your physician, therapist, or other qualified health provider with any questions or concerns you may have.

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