Families with Autism Helping Families with Autism
Medical Testing, Common Issues & Treatment Information

First things first:

In the American Academy of Pediatrics Physicians references there are very few “standards of care” for children affected with Autism. Standards of care are used to define necessary treatments by health insurance companies and the providers of services and treatments. In addition these standards are created so health insurance companies know what to pay for and more importantly, what not to pay for.

Since there are few standards of care for children affected by autism a lot of medical testing and treatments are considered leading edge are considered as “alternative medicine”. This is extremely important because many times if it is out of standards of care the costs for testing and care may be left up to PARENTS. (Please read under LEGAL, HEALTH INSURANCE INFO for California State law AB 88 for equal parity and treatment for Autism.)

In the May 2001 Academy of Pediatrics guide – the section on autism is very thin. It states the following should be done:

  • Look for brain abnormalities – MRI
  • Test for Lead poisoning (good!)
  • Test for seizures with a 24 hour EEG (1/3 of children with autism have seizures)
  • Look at genetic Tests for Landau Kleffner, Rhetts Syndrome, Fragile X and other rare disorders.
  • THAT’S IT!

Parents and professionals need to know what is listed in the American Academy of Pediatrics Standards of Care for Autism. Click here for more details. (At the time of printing these standards have not been updated.)

Many professionals treating children on the autism spectrum understand that baseline medical testing, family intake, and complete exam of the child will help you understand that autism is not just a neurological disorder but is very BIOLOGICAL disease as well. This single thought causes much controversy in the autism and medical communities.

According to world renowned Autism specialists and pediatrician Dr. Jerry Kartzinel from the Thoughtful House reports that after treating over 1,000 patients there are many biological issues could be affecting children on the autism spectrum.

The list of common biological issues include:

Gut Issues

  • Inflammatory bowel disease
  • Reflux
  • Improper food absorption
  • Dysbiosis of the gut (due to bacteria and yeast issues)
  • Sulphanation defect
  • Nutritional problems (including improper protein absorption)
  • Food opioids (this is the need for a gluten/casein free GFCF diet!)
  • Gastritis
  • Leaky gut

Brain & Blood Disorders

  • Seizures
  • Purine disorders
  • Heavy metal toxicity
  • Persistent measles virus
  • Brain blood perfusion
  • Brain autoimmunity
  • Elevated Ammonia levels
  • Serotonin Defects
  • Lyme Disease
  • Melatonin defects (which leads to sleep disorders)
  • Thrombophilia (tend to clotting of blood)
  • Omega 3 deficiency
  • Dopamine effect
  • Chromosomal issues (this is rare)
  • And other new issues are being investigated regularly

Before parents panic, not all autism spectrum children have all these issues!! But rather, children with autism typically have a combination of the above disorders that CAN be addressed through proper medical testing and treatment.

Personal Parent Experiences:

Most of the valuable information I have learned has come from other parents of children on the spectrum. This information has been invaluable in finding and treating the issues for my son Jeff.

It is important to note these personal findings are a parent’s perspective and not a physicians. It is important to receive proper medical testing and treatment unique to each child and not misconstrue this personal information as medical advice.

Early in our autism journey, our doctor perfomed a variety of tests including the Great Plains labs peptides and comprehensive stool tests. These tests including the collection of urine and stool for analysis. These tests results yielded important information about my son’s issues including:

  • He had the inability to process wheat (gluten) and casein – similar to a severe allergy
  • He also had a number of parasites and bacteria in his stool. He also had a significant yeast overgrowth.
  • He was not properly absorbing the nutrients in his foods and had a significant vitamin and mineral deficiency.
  • Other baseline testing was ordered (many plasma based tests) to rule out liver & kidney issues, metabolic and blood issues.

Because of these important test results we decided to have Jeff go Gluten Free/Casein Free (GF/CF) and try supplements to help heal his gut and kill the bad yeast, parasites and bacteria. We also eliminated all dyes, natural flavors, gelatins (even in his supplements) and anything that is not natural in Jeff’s diet. It was also noted that we needed to provide an all natural and organic “clean” diet.

We also had to focus on fixing Jeff’s gut issues and bowel movements which alternated from diarrhea and constipation. These issues were not handled overnight but rather with consistent efforts with an eye on behavior and other improvements and medical test results Jeff got markedly better each month.

WHAT MEDICAL TESTS?

Many doctors have preferred testing and types of test they consider for children on autism spectrum. Some of the most requested medical testing includes:

SPECIAL NOTES ON MEDICAL TESTS!!

  1. Doctors order these tests. It is recommended to perform these tests with direction and interpretation with a good DAN! (Defeat Autism NOW!) doctor– they can be found at www.autism.com/ari or Resources.
  2. You may not require all these test or they may require additional tests (such as a QEEG, Spect Scan –etc.)
  3. Each doctor has a preference with labs
    • Some will review tests done by other doctors or previous years or labs
    • Some won’t! ($$$$)
  4. Health insurance comments:
    • Remember to look into CALIF. STATE LAW AB 88
    • Check with your insurance provider on coverage BEFORE starting a therapy or getting a test done regarding reimbursement
    • NO will always be the first answer and it is NOT the last
  5. There are some testing that may need to be done annually:
    • a. Allergy and food sensitivities
    • b. Comprehensive stool
    • c. Plasma sulphate / cysteine
    • d. Liver / kidney functions
  6. Testing done more frequently (if issues or chelating):
    • a. Comprehensive stool
    • b. Toxic metals (when chelating)

Related reading: click here for more information on medical testing and treatment Health insurance reimbursements

HOW ARE TREATMENT SELECTED?

  • Treatments are selected based on family history & patient intake (symptoms and history)
  • Medical tests results (current and past)
  • What the child has respond to positively and negatively provides important clues
  • Doctors should make a case for going after the priorities based on the parents/child issues
    • You should help set priorities
    • A good doctor will help you prioritize as a tea

Special note on “low hanging fruit” – doctors will make some prioritizations of issues based on parent feedback, patient exam and testing on what to address first and why it is important to tackle these items first.

WHAT TREATMENTS ARE AVAILABLE?

Alternative treatments in addition to AND BEYOND the American Academy Pediatrics Standards of Care is available. Searching for a caring, competent, strong doctor is recommended as a first and important step into biomedical testing and treatment plans.
An excellent link from a caring doctor has been outlined to offer different treatments, links for additional information all in one place.

Please check out this LINK: healing-arts.org/children/autism-treatments.htm#ATEC

This site was written and overseen by Lewis Mehl-Madrona, M.D., Ph.D.

Click here to read additional treatment options.

Commonly used treatments include:

  • Metal Detoxification (chelation)
  • Anti-fungal
  • Gastro assessment and treatments
  • Assessment & Treatment for Metabolic Disorders
  • Secretin (topical & IV)
  • Nutritional Therapies (Supplements)
  • Oral, topical and Push/IV (GO IN THIS ORDER!)
    for example: B-12, Vitamin C, Glutathione
  • Hyperbaric Oxygen Treatments (HBOT)
  • Growth Factor and Trans. Factors
  • IV & Oral Immunoglobin therapies
  • Bio & Neurofeedback
  • Somatic & Listening Therapies (Tomatis, AIT, Berard)
  • Craniosacral & Chiropractic Therapies
  • Pharmacology (last step please)
    • There are many, many more…. These are the most common

It is important to note that it is recommended that you do not set off to try them all! Medical testing results will tell identify what to do first and what is a “maybe later” treatment!

Related reading: Autism Research Institute has surveyed thousands of parents for feedback on biomedical intervention.

Your biomedical and treatment journey for your child will be a long road but well worth the efforts. Results come with time, hard work and consistency. Please keep looking for answers that are unique and unlock the potential for your child. And remember, do no harm.

WHAT SPECIALISTS DO WHAT?

Typically children on the autism spectrum will see more than one doctor in their journey. The typical physicians sought include:

  • General pediatrics are needed for the common children issues
    • Colds, flus, ear infections, check ups, emergencies
  • DAN doctors for alternative treatment plans (NOTE: general ped and DAN doc can be the same person. This path is recommended if possible.)
  • Specialists such as: gastro’s, allergists, neurologists, opthomologists, audiologists and others that specialize is specific issues as it relates to your child are very important to the process.
    • These docs are typically recommended by your DAN or Pediatrician
  • Be sure to share ALL tests results with all doctors on the team!

NEXT STEPS :

Parents should do their best to identifying what medical issues are present in their child. Many treating doctors have a patient intake form that allow families to input their concerns and set priorities.

Parents should also read up on the issues that may be affecting their children. Here is a list of the recommended web links and books:

Web Articles:

Book Recommendations:

The wonderful Autism Research Institute publishes a DAN! (Defeat Autism NOW!) Protocol manual. This manual outlines the treatment guidelines for physicians with resources and guidelines. For a complete copy of the treatment protocols go to www.autism.com/ari and click on DAN! for information. It is recommended to buy one for you and your child’s doctor.

Other excellent resources include:

  • Unraveling the Mystery of Autism and Pervasive Developmental Disorders, Karyn Seroussi, 2000

  • Biological Treatments for Autism & PDD, William Shaw, MD, 2003, 2nd Edition

  • Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults, Doris J. Rapp, 1992

  • Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorders, 2007 Edition, by Jacquelyn McCandless, MD

  • Autism: Have We Done Everything We Can for this Child? Effective Biomedical Treatments, by Sidney Baker, MD and Jon Pangborn, MD

  • What Your Doctor May Not Tell you About Vaccinations, by Stephanie Cave, MD

  • Evidence of Harm, by David Kirby (a must have)

Some final words:

Biomedical treatment and care should be PART of your intervention plan for a child affected by autism. In addition to biomedical intervention please consider one on one behavioral intervention including but not limited to: ABA, VBA, Speech, OT, play skills, Social skills. For additional information on therapy options, please go to our Learning Section. Both a biomedical intervention AND BEHAVIORAL therapy plan are part of a total solution for your child.

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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