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Talk About Curing Autism (TACA) on the Pediatrics Autism GI Reports

Tacalogo full (2) January 4, 2010

Prepared by Rebecca Estepp

Two reports were released yesterday in the American Academy of Pediatrics medical journal, Pediatrics. Both articles focused on gastrointestinal disorders in individuals with autism. The first report entitled Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report is a review of available medical literature surrounding autism and gastrointestinal symptoms from a panel of experts.  These experts came to the following conclusions:

• Medical disorders, including gastrointestinal problems, occur commonly in individuals with ASDs, but because symptoms may be atypical these medical conditions may be undiagnosed.

• Individuals with ASDs whose families report gastrointestinal symptoms warrant a thorough gastrointestinal evaluation.

• The care of individuals who are non-verbal or have difficulties in communication or who display self-injurious or other problem behaviors present special challenges. Nevertheless, the approach to evaluation and diagnosis of possible underlying medical conditions, in particular gastrointestinal disorders, should be no different from the standards of care for persons without ASDs. (emphasis added)

• The communication impairments characteristic of ASDs may lead to unusual presentations of gastrointestinal disorders, including sleep disorders and problem behaviors.

• Management of co-occurring gastrointestinal problems in individuals with ASDs usually begins with the primary care provider and may eventually warrant multidisciplinary consultation.

• Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a subgroup of individuals who may respond to such diets.

• Integrating behavioral and biomedical approaches can be advantageous in conceptualizing the role of pain as a setting event for problem behavior, facilitating diagnosis and addressing residual pain symptoms to enhance the quality of life.

The second report, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs, provides health care providers guidelines in treating abdominal pain, chronic constipation, and gastroesophageal reflux disease. This report recognizes that the expression of gastrointestinal disease can be diverse in individuals with ASDs. It also concludes that unusual behaviors can be a result of gastrointestinal disorders.

TACA views these two reports as giant leaps forward for treatment of gastrointestinal symptoms that cause unnecessary pain to many individuals with autism and their families. This landmark paper will pave the way for pediatricians across the country to start treating children suffering through different gastrointestinal maladies.  We sincerely hope this is the first step towards individuals with autism receiving the medical treatments they need and deserve.

About TACA

Talk About Curing Autism (TACA) provides information, resources, and support to families affected by autism. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments. TACA helps to strengthen the autism community by connecting families and the professionals who can help them, allowing them to share stories and information to help people with autism be the best they can be.

DISCLAIMER: TACA provides general information regarding medical research, treatment options, therapies and nutrition to the autism community. The information comes from a variety of sources, and TACA does not independently verify any of it. Nothing presented at meetings, emails or in print should be construed as medical or legal advice. Always consult your child's doctor regarding his or her individual needs.

If you have any questions, please don't hesitate to contact us.

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Comments

Maria Durci

We need such reports to get into the "mainstream" medical journals to bring more doctors on board. This is a big step. It is the beginning of the acceptance of our thousands of ancedotal reports that our children are physically ill. This is acually a HUGE step and I for one will welcome it with open arms and shout it from the rooftops. I feel validated. We are pioneers and being first means more work, more suffering, more sacrifice, but this would not exist without us. Someone always has to pave the way.

quiet in the south

I have friends who I met thru their PT practice that I first took my daughter for her scoliosis and later my son for cranial sacral therapy. They have been listening to me for years talk abo all the biomedical approaches i have done with my 15 yo spectrum son and they have seen the tremendous progress he has made. My son is my youngest at 15 my oldest 21. they recently had a baby and are very in to wholistic and refused hepatitis B. But along comes the baby, baby is colicky, mom isn't producing enough mom (semi-vegetarian ) next thing I know the baby is on zantac for reflux. The Dad tells me that 90% of newborns have immature pyloric sphincters what? where were these immature sphincters when my kids were born? maybe we just didn't have zantac. Now i'm just worried bc baby is now on similac, plus breast milk, and zantac depletes you of b12 and folic acid lets hope they don't have methylation problems too.... Of course their baby is a boy I feel like i have a front seat at an unfolding disaster. thank god they are delaying vaccinations but these are parents that i would never thought would of given zantac so who knows what the pediatrician "they just love" will talk them into. I tried explaining to the dad that all disease starts in the gut but he is more concerned with me not SCARING his wife.... IM SCARED... are you all familiar with giving zantac as if its another food group? I did say to the Dad "you do realize peds are making 1 out 58 boys autistic today and my son wouldn't have even being counted in that number and his recovery has dominated our families life for 13 years" Hopefully his kid will only get one of the other A's: ADD, asthma etc.

Lisa @ TACA

Hi All

My kid has huge gastro issues - they ebb and flow. They are a constant issue to contend with. No diet or med or supp regiment has 100% dealt with all the problems. He has sure gotten a lot better and is in a regular ed placement because we continue to try and work with him.

Jeff got treatment for his gut issues when he was six years old. They started when he was two. If ONLY we got to a doctor to address his needs at 2 years, 1 month.... sigh.

That is why this study and concensus is important. Kids like Jeff won't have to wait for FOUR DAMN YEARS for someone to listen to his mom because HE COULD NOT TELL THEM WHAT WAS WRONG.

Thats why I am excited. That is why TACA is excited.

Why it doesn't take it as far as I would like - I am grateful beyond words.

All my appreciation - Lisa

michael framson

Here are some of my quick observations:
1) The composition of the panel was quite different than anything we have seen in the past with autism, specifically it wasn't stacked with a preponderance of bias . That in my opinion is quite extraordinary. Yes, it included Michael Gershon who provided evidence for the government in the Cedillo hearing, but it also included many more panelists whose scientific credibility was less influenced by autism politics. It is quite remarkable to have assembled this group of panelist!

2) Taking all the consensus statements together, from a strictly "scientific" perspective, its accurate. I'm sure the process of massaging the wording of each
consensus statement went through several iterations to carefully neither, scientifically overstate, nor understate what is known.

3)Statement 4 & 5 should be taken together since they both deal with permeability (leaky gut) among other things. If research is pursued in this avenue of investigation, it could provide further illumination of the Wakefield hypothesis.

To all the parents of the Age of Autism, you are changing the present and the future. Take some satisfaction in that.

Amy

When I tried to share the same information in Table 2 with doctors and other parents through the years, 95% thought I was crazy. I mean actually crazy: at one point (within the past 2 years) my ex husband got a public guardian to ask a judge to determine whether I warranted a state psych exam for the "disturbed" belief that my son's behaviors were gastrointestinal in nature, and for treating them accordingly.

Although I share TACA's view that this is a giant leap forward, and read them with a mix joyous disbelief and incredible relief, I also resonate with Bob; unfortunately it is not possible to read the two landmark papers without a great deal of simultaneous bitterness for what so many of us have been put through, merely for expressing these exact same ideas, prior to yesterday.

Judith

I like the response of a friend of mine, when she read the article on Pediatric - GI - report - "I'm hoping they start offering Common Sense 101 in Medical School soon!"

Fat chance

StephM

Bob, I could not agree with you more. Here's an article about kids not talking by the age of 3, of course the journalistic angle is that parents are at fault. I hear crickets.........

http://www.timesonline.co.uk/tol/life_and_style/education/article6974590.ece

Becky Estepp

Hi Bob,

I completely understand your frustration. In fact, I commented to the AP that this report should have come out ten years ago. But the sad reality is that it didn't. And now I am just thankful that we have a report in Pediatrics that recognizes GI problems and gives treatment models and standards for the kids that are suffering right now.

I was so disappointed in the AP story that went all over the universe. It was so misleading, so I wrote this statement to highlight all of the steps forward this report made.

Jen in TX

"For instance .. I cannot understand why "pediatricians across the country" required this "landmark" study to tell them they "should start treating children suffering through gastrointestinal maladies"? "

Because there are a lot of autistic kids whose gut problems manifest as behavior problems, which often results in a referral to a psychiatrist, not a gastroenterologist. A lot of pediatricians and even parents don't know this. This is the first step in eliminating Risperdal and other antipsychotics being used as a first line treatment for behavior problems in autistic children.

Trust me, this is indeed a GIANT leap forward, which will pave the way for more study, and new ideas for treatment and prevention.

Benedetta

Bob;
My daughter had kawasaki's before my son had his stroke, seizures and autism. A few years later I, dumb mom, had not put the two together, but the ped did.

He asked me out of the blue, when I had my son to him for the numerous fevers - what I thought caused my daughter's kawasaki's, and I faulter and said I guess some type of virus. The ped smirked! I left the docotr's office and had to think on it still.
That happened close to 20 years ago!
The ped knew - he is not dumb or he would not have been able to get through medical school! This is the same ped that was elated to be chosen test the first batches of chicken pox vaccine!

It is not that he did not know - it is the fact he lack the moral fiber to care!

Bob Moffitt

I have great respect and gratitude for TACA and all you have done for my family over the 8 plus years since our little guy "regressed" .. and .. I pray to God you are right and I am wrong .. but .. I do not see these two reports as "giant leaps forward". I see them merely "kicking the can" down the road.

For instance .. I cannot understand why "pediatricians across the country" required this "landmark" study to tell them they "should start treating children suffering through gastrointestinal maladies"?

Indeed, this report should have accused those pediatricians who failed to perform "due diligence" and act upon a parent's reporting their child showed symptoms of suffering gastrointestinal maladies of MALPRACTICE.

Now that would have been a "landmark" report.

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