Recommendations for Treating GI Tract Symptoms in Children With Autism Issued

A new protocol was released with recommendations for treating GI Tract issues in children with Autism. This is good news for all of us who have left GI doctor's offices with no answers no solutions to help our kids. Nicky's tummy problems began before his onset of Autism. They began as soon as we got home from the hospital. He cried all the time afer he ate and the doctors thought he was having an allergic reaction to milk. They had me stop nursing, feed him special formulas, return to nursing, then we tried soy. Back and forth one thing after another and in the end I went back to breast feeding. Nicky never stopped crying, it wasn't the milk. He cried so much he ended up with a herniated belly button. It was hell! He finally seemed to get better and then he got diarrhea, which lasted for two years and NOT one doctor knew how to stop it. They would test him for everything including Celiac disease the results were non conclusive.

After Nicky's autism diagnosis I remember one of the the most accomplished pediatric gastrointernologist in the country saying to me after running tests on Nicky, "I've run all the tests we have, they don't tell me anything. I've seen this in other children with Autism, but I have no answers. I am sorry."

After two years of no solutions we found our way to DR. Jacqueline McCandless - a retired Neurologist/Psychiatrist who's grandchild had been diagnosed with ASD - she explained that the diarrhea was the result of inflamed intestines and we had to bring down the inflammation and let his intestines heal, which in turn would stop the diarrhea. With her guidance we tried a protocol of diet change, absorb able supplements and medications to stop Nicky's diarrhea and it worked.

I am sharing this new potocol in hopes that other kiddo's will not have to suffer as much as Nicky.


New Reports from Pediatrics on Autism and GI Symptoms
Monday January 4, 2010
Two new reports will soon be available through the American Association of Pediatrics. They include a consensus statement and recommendations for treating gastrointestinal issues in children with autism, and they are being heralded as landmark papers by a surprising range of autism organizations.

The papers are not yet available online, which makes it a bit tough to know precisely what they say. But based on press releases from the Autism Society of America, Autism Speaks and the Autism Research Institute, it seems that the findings are really quite straightforward and unsurprising:

People with autism sometimes have gastrointestinal issues.
Lack of communication skills may make it difficult for people with autism to communicate their discomfort.
When parents or caregivers suggest that such issues exist, pediatricians should take them seriously, conduct appropriate tests, and, if issues do exist, pediatricians should provide appropriate treatment.
A person with autism who is in pain or discomfort as the result of GI issues may exhibit behaviors that are related to the GI issues. When the pain or discomfort ends as a result of appropriate treatment, it's likely that those behaviors will lessen or cease.
Proper nutrition is as important for people with autism as it is for anyone else.
It is unlikely in the extreme that "leaky gut" or other gastrointestinal issues cause or lead to autism spectrum disorders.
It would be a good idea to do more research into the prevalence of GI issues in people with autism.
What is, perhaps, a bit more surprising, is the very different interpretations placed on the publications by institutions with differing agendas and points of view. While most of the media is heading their articles on these reports with banners like Evidence lacking for autism diets, panel says, the Autism Research Institute (creator and promoter of the biomedical DAN! protocol for autism treatment) sees these reports very differently. In their press release, they state:

A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self-injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.

In fact, so far as I'm aware, no one has ever denied that people with autism are as likely as anyone else to have gastrointestinal issues. Nor has anyone ever denied that such issues would likely underlie some apparently autistic behaviors. What has been and is questioned is whether there is any causal link between GI issues and autism. While ARI and some other organizations continue to say that there is, the AAP continues to say otherwise, asserting that there is no evidence at this point to support the idea that GI issues lead to autism.

Autism and Gastrointestinal Issues
Is There a Connection Between GI Issues and Autism?
Special Diets and Autism
UPDATE:

Twyla, a regular contributor to this site, notes that the report entitled Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report is now available online. Here is the abstract:

Autism spectrum disorders (ASDs) are common and clinically heterogeneous neurodevelopmental disorders. Gastrointestinal disorders and associated symptoms are commonly reported in individuals with ASDs, but key issues such as the prevalence and best treatment of these conditions are incompletely understood. A central difficulty in recognizing and characterizing gastrointestinal dysfunction with ASDs is the communication difficulties experienced by many affected individuals. A multidisciplinary panel reviewed the medical literature with the aim of generating evidence-based recommendations for diagnostic evaluation and management of gastrointestinal problems in this patient population. The panel concluded that evidence-based recommendations are not yet available. The consensus expert opinion of the panel was that individuals with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs. Care providers should be aware that problem behavior in patients with ASDs may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders. For these patients, integration of behavioral and medical care may be most beneficial. Priorities for future research are identified to advance our understanding and management of gastrointestinal disorders in persons with ASDs.

Also posted is the report on Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs, along with its abstract:

Children with autism spectrum disorders (ASDs) can benefit from adaptation of general pediatric guidelines for the diagnostic evaluation of abdominal pain, chronic constipation, and gastroesophageal reflux disease. These guidelines help health care providers determine when gastrointestinal symptoms are self-limited and when evaluation beyond a thorough medical history and physical examination should be considered. Children with ASDs who have gastrointestinal disorders may present with behavioral manifestations. Diagnostic and treatment recommendations for the general pediatric population are useful to consider until the development of evidence-based guidelines specifically for patients with ASDs.