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 or a support phone that occurs that we do not discuss “how is 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 strange “postures” during different times (awkward positions applying pressure to the abdomen while going to the bathroom, watching TV or in other situations). Toe walking may also be and indicator.
- 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 the overall gut health and painful. It is critical if a child on the spectrum is experiencing any issues in the bowel movement area 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 recipe for good health! It is extremely important to work with your child on balance and watching intake of sugar, fast foods, too many foods from one food pyramid category and not the others, foods with little nutrition value is very important.
Some related articles for your review:
Proper medical testing can also assist in identifying the problems with bowel movement & gut related issues. Read medical testing information.
Constipation Suggestions:
If a child has constipation issues regardless if the 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:
- Cook with Flaxseed Meal/ Powder – 1 to 4 TBLSPOONS per recipe (i.e. 12 muffins, 1 loaf of Gluten Free/casein free GFCF bread, etc.)
- 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.
- 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!
- Oxy powder is an oxygenated magnesium source with powerful results.
- Fruit and more fruit! Bake with Gerbers baby food if fruit textures are not tolerated and use 2-4 TBLSPOONS per recipe. It will give a nice texture (cut back on other water/liquids)
- Lots of filtered water during the day and more water. Bottom line: Make sure you kids are getting enough to drink each day (especially during HOT days)
- EXERCISE is very important to someone with constipation issues. The more you move the less chances you have of being constipated.
- Magnesium Glycentate can be your friend and your enemy (if you overuse)! Do the Recommended Daily Allowance (RDA) weight and age for your child. It will work! See PDR Reference below for dosing and supplement information.
- Smooth move tea - available at Health Food stores for limited use only in restoring bowel movement. Check the label and instructions of the manufacturer.
- TEST for ALLERGIES – this could be the start of the problem and resolve the problem if the foods or allergens are avoided!
- Milk of Magnesia – check with your doctor on dose – but this over the counter helper is GFCF and does not have side affects like cramping.
- Lower calcium based products and supplements. Calcium in higher doses can be very constipating.
- Ducolax is an over the counter 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.
- Daily doses of Georges Aloe (found at Mothers and Whole Foods Market) typically 2 oz. twice a day of this liquid that has no taste or smell. Check with your doctor on dose.
- Another last resort: glycerine suppositories from the local drug store. CHECK WITH YOUR DOCTOR FIRST PLEASE!
- 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!
NOTES
- 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 change in behaviors as clues and please see your doctor for help. Good gastroentologists can make a huge difference on finding and solving the root problems unique to your child.
- The best pediatric gastroentologist 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 (he 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 working with your doctor in meeting your child’s unique needs is key.
Possible issues causing the diarrhea can include:
- Too much fruit in take
- Too much magnesium intake
- An allergy response to a food or additive
- Too much essential fatty acids or fiber additives
- Drinking bath water that contains Epsom Salts
- The presence 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.
More Complex Issues Require More Complex Action
Some families find that they do all the items earlier in this document that enabling healthy, regular bowel movements from dietary intervention, allergen removal and many of the remedies mentioned above without success. If a parent finds that their child still has issues – major and 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, other biomedical intervention is not as efficacious and especially if the child has sleep disturbances, self injurious behaviors, repeated stool impactions, constant use of 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 reoccurring issues should consider a complete work up by a qualified gastroentologist.
Issues can include:
- Chronic diarrhea and/or constipation
- Seizures
- Self Injurious behaviors
- Posturing and/or pain during the bowel movement process or to relieve pressure
- Sleep disturbances
- Unexplained behaviors 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 reoccurs or does not respond to treatments (yeast overgrowth, parasites or bacteria)
WHO IS THE BEST DOCTOR(S) IN THIS AREA?
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 WITH THE GASTRO ASSESSMENTS?
Typically a complete assessment for gastro related issues include:
- complete file review for all medical issues and treatments to date
- a patient intake
- review of previous medical tests
- a request of additional and or new medical tests (depending on case history and what tests have been recently performed)
- a colonoscopy and/or endoscopy of the child to view the issues and possibly biopsy any problem areas.
- a phone consult to review the case, new labs results and old tests and a detailed plan for the procedure.
- A patient exam
WHAT DOES THE PROCEDURE LOOK LIKE?
Typically a family flies into the Long Island, Austin, or Boston on a weekend. The initial consult is done on a Monday with the procedure and biopsy on Tuesdays. Families can leave after doctor's approval; typically the following day.
HOW DOES A FAMILY PREPARE THEIR CHILD FOR THE PROCEDURE?
- Get an appointment. There are long wait lists for appointments for Dr. Buie and D.r Krigsman. Call and reserve your spot as soon as possible.
- Get pre-approval set up with your health insurance company. When you have the appointment, work with the doctors 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.
- Prepare your child: prepare your child using social stories that the procedure will take place and set expectations. Plan a special reward once the procedure ends. 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 finding 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 or exasperate inflammation)
- frequent constipation and or diarrhea
- reflux
- or other issues based on the procedure results
WHAT HAS HAPPENED WITH OTHER FAMILIES?
Since March 2007, I consulted with more than 125 families that have gone through the procedures 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
- 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.
- How soon can you go home after the procedure? As soon as the doctor gives the approval which is typically less than one day after the procedure.
- How long is the procedure? The procedure depends on the child and can last 1 – 3 hours depending on the procedure as defined by the doctor.
- I cannot afford this procedure, what can my family do? Check TACA's Financial Assistance Ideas. Both Dr. Krigsman and Dr. Buie offer limited assistance to family in great need. This depends on funding availability and the family qualifying for the programs. Please see Ladders Foundation or Thoughtful House for details.
- 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 angle the camera if something needs special attention. In addition, if something is of concern and requires a biopsy this cannot be perform with the pill cam. Typically families can opt in for the endoscopy and colonoscopy with or without the pill cam. Discuss with your doctor based on your child’s needs and insurance coverage.
- In March 2007, Autism Speaks has presented a gastro initiative to help define the issues, train other physicians and come up with a treatment protocol for children on the spectrum. It is important to note that the American Academy of Pediatrics (AAP) has not changes the standards of care for autism since May 2001. Many children cannot wait for these items to change the standards of care and seek outside help to treat other major medical issues BESIDES autism.
A Parents Story About Their Son
To read another parents story on this topic – please see the following links:
Related reading & resources
Books
Pdr Supplement A 2005: Physicians' Desk Reference (Physicians' Desk Reference (Pdr) Supplement) by Pdr Physicians Desk Reference for supplement descriptions and doses.
Web links
What supplements help what symptom
What is it? A checklist in helping identify potential problems
Financial Assistance Ideas for Families with Children Affected by Autism
Gastroentology for Autism Spectrum Disorders: Frequently asked questions from Thoughtful House, by Dr Arthur Krigsman
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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