Families with Autism Helping Families with Autism
THE “POOP” PAGE
Dedicated to fellow “poop peepers” like me!

Many children with autism suffer from many issues involving the gut and their bowel movements (or lack there of). So much so that not a meeting goes by nor a support phone conversation that does not involve discussion of “how are your child’s poops?”

Based on the obsession to help children “go” daily, one would conclude this process is a newly found hobby. Many TACA families take great care in discussing, analyzing and fretting over their child’s poops! (So you are not crazy! Join the club!)

For our kids (and most humans) moving your bowels daily is a key component to basic and good health. If a child is having bowel movements:

  • That happen too quickly after eating (for example less than 1 hour) and they are loose – there are issues to address.

  • That are 2, 3, 4 or more days apart – they are not stooling often enough! There are issues to address.

  • If the food particles are not fully digested and you recognize the food in the diaper or toilet – there are issues to address!

  • If the child has a bloated belly beyond the age of two there are issues to address.

  • If the child performs self-stimulatory behavior such as toe walking, flapping or posturing (while stooling), or if posturing appears to provide comfort. Posturing may include applying pressure to the stomach area for example, by leaning the stomach against a blunt object/arm.

  • If the child that alternates between constipation and diarrhea there are issues to address.

If the bowels are not moving daily, they can become toxic to overall gut health and can be painful. 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, exercise, fiber, and variety of foods including fruits and vegetables (or vegetables and fruit in disguise!) is very important for good health! It is extremely important to work with your child on balance. Limiting intake of sugar, fast foods, too many foods from one food pyramid category and not others, and foods with little nutrition value are also very important.

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Proper medical testing can also assist in identifying the problems with bowel movement & gut related issues.

Constipation Suggestions

  1. Cook with Flaxseed Meal/ Powder – 1 to 4 tablespoons per recipe (i.e., 12 muffins, 1 loaf of GFCF bread, etc.)

  2. Can you say FRUIT EZE? This product is a PRUNE and fruit paste that is a great mock JAM on GFCF toast and sandwiches and even pancakes/waffles.

  3. Epsom salt baths–1 cup of Epsom salts (and a pinch of baking soda) every night. Drinking the bath water is ok if you are CONSTIPATED!

  4. Oxy Power is an oxygenated magnesium source with powerful results.

  5. Fruit and more fruit! Bake with Gerbers baby food if fruit textures are not tolerated and use 2-4 tablespoons per recipe. It will give a nice texture (but cut back on other water/liquids).

  6. Lots of filtered water during the day and then some more water. Bottom line: Make sure you kids are getting enough water to drink each day (especially during HOT days).

  7. EXERCISE is very important to someone with constipation issues. The more you move, the less chance you have of being constipated.

  8. Magnesium Glycentate can be your friend or your enemy (if you overuse)! Take the Recommended Daily Allowance (RDA) based of the weight and age of your child. It can help! See our recommended use of Physician’s Desk Reference (PDR) below for dosing and supplement information.

  9. Smooth Move Tea - available at health food stores for limited use only in restoring regular bowel movement. Check the label and instructions of the manufacturer.

  10. TEST for ALLERGIES–this could be the start of the problem and easily help you resolve the problem if negative-response foods or allergens are learned and then avoided!

  11. Milk of Magnesia–check with your doctor on recommended dose–but this over-the-counter helper is GFCF (double-check the label as always) and does not have side affects like cramping.

  12. Lower calcium-based products and supplements. Calcium in higher doses can be very constipating.

  13. Dulcolax is an over-the-counter medication that is an extremely SMALL pill that can be taken and voila, poops be happening. Please note this product has a red dye and can cause cramping for some individuals.

  14. Daily doses of George’s Aloe, found at Mother’s and Whole Foods Markets, are typically 2 ounces, twice a day, of this liquid that has no taste or smell. Check with your doctor on a recommended dose.  Another option is Fibersure.

  15. Another last resort: glycerine suppositories from the local drug store. CHECK WITH YOUR DOCTOR FIRST, PLEASE!

  16. Enemas (one of the last resorts)–get the child size enema from your drug store (plain wrap “FLEET” enema.) If adult dose, use half! CHECK WITH YOUR DOCTOR FIRST, PLEASE!

If a child has constipation issues regardless if they stool everyday it is possible they are not stooling enough. It is important to work with your child’s doctor on these suggestions for helping along regular bowel movements.

Notes

  1. STOOL IMPACTION and constipation can be incredibly painful for children. An exam and x-ray of the lower abdomen can demonstrate that the stools are beyond impacted and may require MEDICAL ATTENTION. Look for distended tummies, night wakenings because of a child in pain, and dramatic changes in behaviors as clues and please see your doctor for help. Good gastroentologists can make a huge difference in finding and solving the root problems unique to your child.

  2. The best pediatric gastroentologists that understand and treat autism are Dr. Arthur Krigsman from Thoughtful House in Austin, Texas and Dr. Tim Buie from Massachusetts General Hospital for Children (the latter is also a teacher at Harvard Medical school.)  In many cases, if children on the autism spectrum are experiencing severe, prolonged gastro-related problems, a trip to either one of these professionals is recommended.

Diarrhea Suggestions

Frequent diarrhea that occurs once a day or sometimes up to nine times a day is a serious medical issue. Many times children will experience diarrhea with a cold, flu, allergy or other related health issue at some time in their lives. If diarrhea continues for a prolonged period of time such as 4 or more days – please contact your doctor immediately.

Sometime autism spectrum children alternate from diarrhea and constipation. Often, this could be due to dealing with one or the other issue and the pendulum swings back and forth in extreme ways. Finding a balance with natural remedies or prescribed remedies and working with your doctor in meeting your child’s unique needs is key.

Possible issues causing the diarrhea could be:

  • Too much fruit intake
  • Too much magnesium intake
  • An allergic response to a food or additive
  • Too much essential fatty acids or fiber additives
  • Drinking too much bath water containing epsom salts
  • The presence of offending parasites or bacteria in the gut
  • And other issues!

BOTTOM LINE - Prolonged diarrhea or constipation is NOT acceptable for any children and requires medical treatment. It Is time to seek medical attention if these symptoms continue more than 4 days.

More Complex Issues Require More Complex Action

Some families find that despite their best efforts at attempting to encourage healthy, regular bowel movements through dietary intervention, allergen removal, and many other remedies mentioned above, their efforts don’t meet with success.  If a parent finds that their child still has bowel movement/gut issues, major, new action is required from a qualified and up to date gastroentologist.  This is especially true if a child is not benefiting from traditional therapies, if other biomedical interventions are not as efficacious, and especially if the child has sleep disturbances, self-injurious behaviors, repeated stool impactions, constant uses Miralax or Flagyl type prescribed drugs, or other issues. It may be time to get more professional help for your child.

First Step - Finding a Specialist

Consider consulting with a gastroentologist if your child has issues with bowel movements that have yet to be resolved.  Unfortunately many children on the spectrum that are reviewed by traditional and current gastroentology standards and testing typically reveal NO PROBLEMS or abnormal testing.  It is important to note this is a NEW area for many gastroentologists. And many of the tests are new to this field. Parents may need to seek help outside their immediate area for addressing these issues.

Prolonging untreated gastro-related issues is not recommended.  A consultation and complete review is recommended for children with gastro-related issues.

Why Consider This Treatment?

Children who are not responding to available treatments or have recurring issues should consider a complete work up by a qualified, up to date gastroentologist.

Issues can include:

  • Chronic diarrhea and/or constipation
  • Seizures
  • Self-injurious behaviors
  • Posturing and/or pain during the bowel movement process possibly to relieve pressure
  • Sleep disturbances
  • Unexplained behaviors and/or not responding to behavioral intervention or other therapies
  • Malabsorption, weight loss or no weight gain for longer than 6 months
  • Malodorous stools
  • Gut imbalance that often recurs or does not respond to treatments (yeast overgrowth, parasites or bacteria)

Who Are the Best Doctors?

The best gastroentologists in the U.S. are Dr. Tim Buie (Boston, MA) at Ladders Organization and Dr. Arthur Krigsman (Long Island NY and Austin TX out of Thoughtful House)

What Are The Issues For Children On the Spectrum?

Review the Thoughtful House protocol for gastro-related issues for children on the Autism Spectrum.

What Happens At Gastro Assessments?

Typically, a complete assessment for gastro-related issues include:

  • Complete file review for all medical issues and treatments to date
  • Patient intake
  • Review of previous medical tests
  • Request of additional and/or new medical tests (depending on case history and what tests have been recently performed)
  • Colonoscopy and/or endoscopy of the child to view the issues and possibly biopsy any problem areas
  • Phone consultation to review the case, new labs results and old tests, and a detailed plan for the procedure
  • Patient exam

What Does the Procedure Look Like?

Typically, a family flies into Long Island, Austin, or Boston on a weekend. The initial consult is done on a Monday with the procedure and biopsy on Tuesday. Families can leave after receiving the doctor’s approval, typically the following day.

How Does a Family Prepare Their Child For the Procedure?

  • Make an appointment. There are long wait lists for appointments for Dr. Buie and Dr. Krigsman. Call and reserve your spot as soon as possible.

  • Get pre-approval set up with your health insurance company. Once you have the appointment, work with the doctor’s office in getting pre-approval of the procedure from your health insurance.

  • Talk to other families who have gone through this process for their feedback and advice. Mentors are available through TACA.

  • Prepare your child using social stories about the procedure that will take place and discuss expectations. Plan a special reward for after the procedure. TACA has several social stories for this procedure depending on the child’s age and comprehension level.

What Do the Treatments Look Like?

This greatly depends on the findings from the lab results, biopsies and observations from the procedure. Typically treatments are utilized to address issues unique to the child that could include:

  • severe inflammation
  • immune modulation (which can lead to or exasperate inflammation)
  • frequent constipation and/or diarrhea
  • reflux
  • or other issues based on the procedure results

Gut cleanouts – “Wiping the slate (gut) clean” every 6-12 months can be a good thing. This is a standard pediatric gut clean out protocol that has worked for my family for many years:

  • Bottle of magnesium citrate (any drug or grocery store)
  • Fleet enema
  • Lots of water
  • Dulcolax: Give first according to package directions, and start hydrating with water. The next day, give enema, then give the magnesium citrate. Keep your child hydrated with water.

What Has Happened With Other Families?

Since March 2007, I consulted with more than 125 families that have gone through the procedure(s) with either Dr. Buie or Dr. Krigsman. One hundred twenty-three of the families found issues in the procedures that were treatable and their children are improved at different levels. Two families found nothing as a result of the procedures.

Special Notes

  1. How soon can they eat after the procedure?  Right away if there are no issues as determined by the doctor. You can bring preferred snacks to the medical facility and wait for the doctors approval to share with your child.
  2. How soon can you go home after the procedure? As soon as the doctor gives his/her approval which is typically less than one day after the procedure.
  3. How long is the procedure?  The procedure depends on the child and can last 1 – 2 hours depending on the procedure as defined by the doctor.
  4. I cannot afford this procedure, what can my family do? Check for financial assistance ideas/sources. Both Dr. Krigsman and Dr. Buie offer limited assistance to families in great need. This depends on funding availability and families’ qualifications for the programs. Please contact the Ladders Foundation or Thoughtful House for details.
  5. Pill cam: Can we just opt for the pill cam for our child and not go through the endoscopy and colonoscopy? Unfortunately, no. The issues are not something you can observe for a length of time and adjust the angle of the camera if something needs special attention. In addition, if something is of concern and requires a biopsy, this cannot be performed with the pill cam. Typically, families can opt for the endoscopy and colonoscopy with or without the pill cam. Discuss concerns with your doctor based on your child’s needs and insurance coverage(s).
  6. In March 2007, Autism Speaks presented a gastro initiative to help define the issues, train other physicians, and devise a treatment protocol for children on the spectrum. It is important to note that the American Academy of Pediatrics (AAP) has not changed the standards of care for autism since May 2001. Many children cannot wait for these much needed updates/changes to the official standards of care and should seek outside help to treat other major medical issues BESIDES autism.
  7. The American Academy of Pediatrics revised their standards of care for Autism In October 2007 to include pediatricians to refer patients with gastrointestinal issues.  It appears that if the child has gastrointestinal issues, the parents need to push for a referral. Do not wait for the doctor if indicators demonstrate otherwise.

A Parents' Story About Their Son

Part One

Part Two 

Resources

Books

Web links

Tapes

From a recent Autism One or Defeat Autism Now! (DAN!) conference purchase the session tapes for either Dr. Tim Buie or Dr. Arthur Krigsman. You can acquire tapes, CD or audio files for approximately $10 + shipping from either of these web resources:

NOTE: IF A SYMPTOM CARRIES A FEVER, LONG PERIODS OF IRREGULAR BOWEL MOVEMENTS WHICH CAN LEAD TO DEHYDRATION OR OTHER ISSUES, EXTREME CHANGE IN BEHAVIOR, 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 does 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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