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Autism Speaks GI Symposium by Katie Wright

Gut-brain By Katie Wright

Autism Speaks recently organized and sponsored an exceptional symposium for pediatric GIs on autism and GI disorders. It was a great day for our kids and there were many highlights I would like to share.

Drs. Ashwood, Murch and Buie were all excellent. Ashwood did a beautiful job explaining how intricately the immune system is related to these GI disorders. Buie gave a moving lecture and was, sadly, the only doctor to actually include photos of children actually suffering from GI disease. Murch is one of the original authors of the Wakefield 1998 paper for the “Lancet.” Piece by piece he separated out the histrionic accusations from the paper’s actual findings and conclusions. He discussed how shocked he and his colleagues were over 10 years ago to find so many autistic children seeking their help for GI disease. They were even more shocked to discover the inflammation and disease revealed in the colonoscopies.

Murch spoke about the stifled progress in this field being the result of the political backlash as many scientists left ASD/GI research in favor of safer, less career damaging pursuits.  Meanwhile GI disease amongst ASD kids is worse than ever. Doctors treating this problem are so difficult to find and bad advice remains rampant throughout mainstream medicine. All too often doctors view GI disease behaviorally, fail to take a proper history regarding the onset of the symptoms and give unhelpful suggestions.

The conference began with some AAP speakers, none of whom were very insightful. They used those words and phrases we have come to know all too well:  “mystery”,  “no one knows”, “unclear, “Eric Fombonne.” You get the picture. No sense of the pain that surrounds this issue or compassion for these kids. When one doctor showed a Fombonne “GI” study, I jumped to the mike. I had to ask the doctor why he would choose to present the work of a Canadian psychiatrist, and vaccine company board member, as some kind of exalted expert on GI disease and autism? Should we be also be looking at GI studies by Ears, Nose and Throat doctors or OBGYNs? At no time did this doctor reveal Fombonne’s conflict of interest as someone who is regularly paid to testify against these ASD/ GI children in court. I felt it would be wrong of me not to point this out, so I did. The AAP needs to stop presenting such sloppy conflict riddled research. It is embarrassing.

Despite this community’s great frustration with the pediatric establishment, I have to say how pleased I was to meet many of wonderful GIs in attendance. There were over 150 GIs. Given the ignorance surrounding this issue there should have been 5,000 GIs at the conference but one step at a time

During the conferences attendees learned a lot about the trajectory of my son’s GI disease (sorry but I was one of the few parents in attendance) and numerous doctors had questions for me afterwards. In the restroom a doctor approached me in tears. She told me that she was ashamed that her practice does not treat these children. She and her partners have no idea how to help and dread appointments with autistic kids. Other doctors complained to me that the general feeling is that these kids are impossible to deal with and difficult to diagnose.  They desperately need help, education and guidance to serve these patients. Many asked me to recommend books and other conferences. I was more than happy to do this but it seemed like an inefficient way to spread information.

I had repeatedly asked the conference organizer, Dr. Dan Coury, head of AS’ Autism TREATMENT Network, to invite Dr, Julie Matthews to be a presenter on dietary inventions and GI disease. She is a published author and professional nutritionist for ASD children, specializing in this sub population of children.  I mean we can describe these symptoms all day long but until we give doctors tools to help these children how will their outcomes change? Dr. Coury declined to invite Matthews.  It was a lost opportunity to provide concrete help for our kids and give the GIs the information they need.

Dr. Harland Winter and Dr. Lonnie  Zelter gave uninspiring talks. The one time Dr. Zelter spoke of parent reports it was in a “parent reports are not always reliable context.”  I am still waiting to see the study on how reliable physician reports are in context to gauging GI disease. I know where I would place my bets. Zelter spoke mainly about high functioning children and did little to link the subject usefully to the specifics of the GI/ASD disease population. Dr. Winter also presented no pictures of kids and few compelling specifics regarding the causes and treatments surrounding this disease. Both doctors have an open invitation to my home to view this disease in action, maybe then they can retire the words “mystery”, “no one knows”…in the context of autism and GI disease.

Dr. Coury’s choice to have Dr. Fasano and Dr. James speak  redeemed the slow middle part of the conference. They were amazing! I wish AS got these talks on video and parents and doctors could stream it from the AS website. Absolutely fantastic speakers. Fasano spoke at length about the need for doctors to change the paradigm of GI disease and ASD kids. We need to stop looking for the textbook signs of Crohn’s and learn about how the GI disease affecting ASD kids presents itself in a scope. The pattern was there in Fasano’s slides but the GIs have been missing it. Like Dr. Buie, Fasano exhorted the audience to listen more closely to parents and work harder and be more open minded when treating this disease. Dr. Fasano even spoke about how dairy exacerbates symptoms! Incredibly, Fasano and James were also the only speakers to speak about vaccines as a possible trigger. They both talked about the completely unknown effects of toxic adjuvants on the central nervous system.

Dr. James was riveting to watch. She took apart complex scientific processes section by section showing how the immune system and the GI system could be damaged by environmental insults. It was a shame she was the last presenter and had the smallest audience.

Autism Speaks took big risks with these truly innovative speakers, and guess what, the GIs are ready to hear what they had to say!  The only thing many of them seemed to be frightened of is continuing down the same futile treatment path. The majority of the attendees really want to help our kids but need education and training. It was a great conference, one I wish would be held bi-annually in every city in the U.S.

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Comments

Amy

If there is anyone out there that can help me and my son. We need GI doctor that has SOME knowledge about autsim and the link with GI issues. My son has "accidents" about three times a day. He is so embarrassed and ashamed b/c he doesn't know he is going until too late. I have been to Three GI's here and none will say its anything more than a behavioral issue. i am willing to drive ANYWHERE to help him.. Please help if you can (amybrook@bellsouth.net)

Kathy Blanco

I found this connection intriguiging, and I hope I can relay it in the way all can understand....while looking up H1n1, I was surprised to find they found an immune molecule in people who died of the virus, both today and when the spanish flu occured. I looked it up, and it seems our autistic kids also have this proinflammatory molecule in their serum. So the question seriously should be...that some people can handle infections, and some can't. Just look at why I say so. You will note they know how to block this molecule, but don't bother to tell us, the proinflammic type of people what and how to do that? And note, it could be a biomarker for autism, and or a contraindication to vaccinations. I know wakefield was looking at IL-10, but this new one they discovered proves to be to me, an interesting side track, and probably should be detected then whenever a mom decides to do a scope job. But note the language, virus or BACTERIA and note that there was pre infection status before the infection. I believe one of those bacterias involved is familial borreliosis, like syphilis can be had in utero and cause autism. Lyme. And, Lyme is increasing as fast as autism in the country. This is why I say, it's time to look at ALL infections, and cytokine and inflammation markers involved in the autistic enterocolitis model.


[PDF]
Detection of IL-17 and IL-23 in Plasma Samples of Children with Autism
File Format: PDF/Adobe Acrobat - Quick View
IL-17 levels autism compared with age-matched typically developing controls. ..... Contribution of interleukin 17 to synovium matrix ...
www.scipub.org/fulltext/ajbb/ajbb42114-120.pdf

Regulation of inflammatory Th17 cells in autism spectrum disorder
New York University School of Medicine


Numerous studies suggest that abnormal activation of the immune system plays a role in causing autism. Some behavioral problems in children have been traced back to viral infections in their mothers during pregnancy. Studies in experimental mice have shown that revving up the mother's immune system during pregnancy results in offspring with altered gene expression in the brain and problems with behavioral development. More specifically, immune system changes and autoimmune disorders, such as inflammatory bowel disease, have been found in individuals with autism.

Dan Littman and his colleagues at New York University School of Medicine suspect that the link between immune function and autism lies in a newly discovered subset of immune cells called Th17 cells.

Th17 cells are so named because they produce the inflammation-inducing signaling molecule interleukin-17. Their normal role is thought to be in fighting bacterial and fungal infections, but if this defense mechanism goes awry, Th17 cells can cause inflammatory tissue damage that eventually leads to rheumatoid arthritis, multiple sclerosis, Crohn's disease, psoriasis and other autoimmune and inflammatory diseases.

Littman and colleagues propose to study the contribution of these cells to autism using both mouse models and clinical samples. The researchers plan is to use experimental mice lacking Th17 cells to shed light on the cells' role in the behavioral changes linked to activation of the maternal immune system. The researchers also plan to examine the function of Th17 cells in mice lacking MeCP2, the gene that is defective in the autism-related Rett syndrome.

Clinically, the researchers plan to compare levels of Th17 cells and the chemical signals they produce in blood samples from individuals with autism and healthy controls. They will also look at the distribution of other immune cells that can mediate inflammation. The findings from their study may strengthen understanding of the connection between autism and the immune system.



Submitted by Kathleen Blanchard RN on Dec 16th, 2009
All about:
Flu and Cold
Spanish researchers, for the first time, have identified a first immunological clue as to why some patients with H1N1 flu develop pneumonia and die. The researchers studied patients in Spanish hospitals during the first wave of H1N1 pandemic in July and August 2009, finding high levels of an important molecule, Interleukin 17, in the blood of patients with severe cases of H1N1 flu.
The molecule, Interleukin 17, is an important regulator of white blood cells needed to fight infection. Patients with mild symptoms of H1N1 flu were found to have lower levels of Interleukin 17. When high levels of the molecule are present widespread inflammation and cytokine release occurs.
High levels of Interleukin 17 are linked to autoimmune diseases such as rheumatoid arthritis. The molecule is widely implicated for promoting inflammation. Identifying individuals with high levels of Interleukin 17 found in patients with severe illness and pneumonia from H1N1 flu could lead to earlier intervention and treatment strategies.
According to David Kelvin, leader of the Canadian team, Head of the Experimental Therapeutics Division, Toronto General Hospital Research Institute, University Health Network and Professor of Immunology, University of Toronto, "In rare cases, the [H1N1] virus causes lung infections requiring patients to be treated in hospital. By targeting or blocking TH17 in the future, we could potentially reduce the amount of inflammation in the lungs and speed up recovery." TH17 cells produce Interleukin 17. Kelvin adds that it would be years before the treatment could be developed for clinical application.
Research is needed to find ways to block Interleukin 17, but the scientists say a blood test could be developed in the near future that would identify individuals at risk for developing severe illness and deadly pneumonia from H1N1 flu.
"A diagnostic test could let us know early who is at risk for the severe form of this illness quickly," says Kelvin. High levels of Interleukin 17 could indicate the body's inability to rid itself of the H1N1 flu virus, also found during the 1918 Spanish flu pandemic that caused high numbers of deaths.
For the first time, scientists have targeted an important immunological reason that explains why some individuals develop severe H1N1 flu symptoms and death. Identifying high levels of the molecule Interleukin 17, that the scientists say becomes "out of control" when H1N1 flu is severe, could help target those who are at highest risk for severe illness from pneumonia associated with H1N1 flu.


. “An observant parent’s evidence may be disproved but should never be ignored” —Lancet 1:688, 1951, Anonymous

__._,_.___

Benedetta

Karin that was funny and all so true.
But I think it takes a special type of person to be a doctor.
Several requirements are needed, but the most important first two are: having a good rote memory - able to learn in SCHOOL, and the second is faith that if the text book said it then by God it is true.

Jenny

I also agree with Kathy regarding looking at other things in the intestines, now that it is becoming more and more clear about the connections between the brain and the gut. For instance, how many babies with ASD started out as colicky infants? How many parents went through multiple formulas and acid reflux doses to calm their babies' pain? Sciencedaily.com (though I read them now with a grain of salt) posted research last summer that found inflammation and something called Klebsiella bacteria in colicky babies that closely compared to patients with inflammatory bowel disease. The researchers hypothisize that it could be a precurser to other gastrointestinal conditions like IBS, Celiac, and allergic gastroenteropathies. At the very least it could be an indicator that the immune system is off track and one should beware of unusual vaccine reactions, or even a risk factor to consider as babies are in the early stages of diagnosis.
I believe that even if the medical establishment is too slow to incorporate these ideas into medical advice, parents who dig and follow the research and conferences can pick up vital clues on how to help their children in the meantime.

Natasa

"Dr Murch is on the record as stating that MMR does not cause autism, and that his work was misrepresented to say that it did"

Dr Wakefield has said the same thing! He never claimed that his work shows MMR "causes" autism, he always states that all that study showed was vaccine strain measles present in % of their sample. Which raises questions, but does not prove anything, nor is it trying to prove anything. That was not the point of their study, and he never himself interpreted it that way.

The retraction was around interpretation, which was never there in the first place.

Katie Wright

Interesting points Tina.

I think Murch wants it both ways. He wants to avoid the nightmare Wakefield has endured but basically stood by his research at the conference. Very , very few doctors would be willing to pay the price Wakefield has- sad but true.

Yes, I think Buie treads the line very very carefully. He clearly has great compassion for our kids but is hesitant to speak openly about causation. It is s shame because he is a mainstream well respected doctor and we can only deal w/ treatment for so long- we must honestly address causation. Right now I would guess that 10% of kids who need GI treatment are receiving it.

Richard

Thanks Katie, for standing up for our kids when so many fight against them.

Kathy Blanco

Isn't also time to check for other pathogens, other than vaccines in the gut? Such as XMRV a retorivirus found in our kids, and let's get this one...HIV retorivurs infected people get illoid hyperplasia too....what's the connection? I believe that contaminated vaccines in animal cell media are to blame....and that this can do as much damage as the actual viruses like MMR. Albeit, they fully admit, that the MMR vaccine has retroviral contaminations in it?

Tina

I'm slighly surprised by this posting by Katie Wright.

If I'm not mistaken, Dr Murch is on the record as stating that MMR does not cause autism, and that his work was misrepresented to say that it did. I believe he organised a retraction of Dr Wakefield's original claims.

I also think Dr Buie is on the record stating that, while some children with autism suffer from bowel disorders (as do all kinds of children), he has seen nothing distinctive in the guts of children with autism. In short, that autistic children have all the same problems as any other, but that they are more likely to be overlooked.

Katie doesn't mention their views on such things, so I wonder if there's a second installment coming, or whether they weren't discussed. The impression I get is that they were discussed - with Dr Murch particularly speaking out against any link between autism and vaccines - but Katie has possibly glossed over them.

Is there any further information?

kelly milazzo

Again, again and once again thank you Katie! You are a ROCK STAR! THANK YOU for helping AS and leading them, WOW! This was just a breakthrough and brought tears to my eyes. I am so very grateful for your educated, knowledgable advocacy and persistence. What a help to so many docs and families! Thank God for Katie Wright!

AND for her parents! I know that AS is not a perfect support organization, but I'm so thankful that you continue to lead them, chastise them, push them, and coerce them to see the many faces of autisms! I remember years ago when Bob Wright had his week long autism awareness campaign on the NBC family of channels. Nothing had ever been done like that and as a parent -- as a "Warrior Mom" that preceded Katie by a few years -- i was blown away. I saw his sincerity. He rang true for me and i was so thankful that autism had a very powerful voice to join us. It's not perfect, and I'm so encouraged to see Katie continue to lead them to better support us, YAY! ~KELLY

Karin

This might sound cold, but I am sick of hearing about doctors who "want to help but don't know what to do." This is B.S.- if parents with backgrounds/careers in law, plumbing, culinary arts, finance, marketing, orthinology, social work, teaching, history, accounting, computers, art, etc, etc, etc can learn about all of this, then surely medical doctors who specialize in children and/or GI issues should be able to locate this "Top Secret" information as well!!

I am not implying that training isn't needed and/or that info doesn't need to be widely disseminated...it does!!! But I also don't buy into the "Woe is me...can't figure out what to do about these kids w/ ASD and GI issues- wah!" If WE can figure it out, THEY can figure ot out.

chantal Sicile-Kira

Glad to hear, way to go Katie!

Maria

Great job Katie- We all need to speak up and question out loud. It is the only way we will get through and leave a better and safer world for our victimized children.

Wasn't there a symposium like this a couple years ago in Boston??? Too bad nothing came of it. I remember there were recommendations for the pediatricians as far as checking for GI issues. They still just look at us like crazy desperate parents when we try to get help for our children. I have found that children with any type of brain disability gets worse medical treatment that their typical peers. Also the parents get less support and compassion from the Doctors.

anonymous000012002

Once again thank you Katie.It was a good post.

Autismdaddy

Katie
u r a beacon of light in a dark world!

Sylvia

I am so thankful for your continued dedication of advocacy for our kids and for informing parents. And for calling attention to Fommbone's conflict of interests at this conference? Well that is just the icing on the cake! You are the BEST Katie!

Kent Heckenlively

Katie:

I'm happy to read this information on so many levels. Happy that an organization with as much clout as Autism Speaks is moving in the right direction. I'm also happy for you personally that the organization your parents started because they cared so much for you and your son is changing its ways.

All the best,
Kent Heckenlively

julie

Katie, you rock as always! Thank you for being there to speak for the kids and parents.

I guess Autism Speaks isn't completely useless after all.

What gets me is that Dr. Wakefield is always portrayed in the media as the "lone voice" making the connection between bowel disease and ASD (I'm looking at you, Matt Lauer), and here you have a conference with pediatric gastroenterologists from major hospitals and research centers all saying the same thing: kids with autism DO have bowel disease! Is this going to get a mention in USA Today? NY Times? LA Times? Or do they only report new findings of that "autism gene" we all have?

Judy Converse MPH RD LD

Thank you Katie! Knew this event was coming and would have loved to attend. Very sorry to be far away and unable to go. Please let us know if there are any published monographs from it. I am encouraged to know there were 150 GIs in attendance. I would love to know their names so I can refer to them.

Mercury Dad

I look forward to the day when Autism Speaks invites Dr. Wakefield to their GI symposium. It was a big step on their part to include Simon Murch but the omission of Wakefield is glaring indeed. Drs. Wakefield and Murch are true heroes for our children, especially in light of the persecution they are facing within the kangaroo court held by the GMC.

Katie - Thank you so much for your wonderful work. Your efforts actually led Autism Speaks to hold a conference on autism and GI in the first place. Keep pressing!

Twyla

Wow, this is very encouraging. Yay for AS and ATN for putting together this conference, and for the better speakers, and for you (Katie) for speaking out about Fombonne rtc., and for all the gastroenterologists who attended and who want to learn.

I'm so glad Dr. Murch was there to discuss his and Dr. Wakefield's work which has been so unfairly and widely maligned and mischaracterized.

If only gastroenterologists would learn more about dietary intervention. I know that was one of Elaine Gottschall's frustrations. Hopefully the time will come when diet is a more accepted medical intervention for GI issues.

Thanks so much Katie for your reporting as well as your role in this ground breaking educational conference.

Cindy Keenan

While I have some sympathy for the physicians who feel ill-prepared to treat the GI distress of kids with autism, the onus is on THEM to protest to their professional leaderships. Until the docs start pushing for answers, their education will range from non-existent to hit-or-miss at best. Where is their intellectual curiosity?

Jen in TX

"In the restroom a doctor approached me in tears. She told me that she was ashamed that her practice does not treat these children. She and her partners have no idea how to help and dread appointments with autistic kids"

So true. My son's mainstream GE told me that he sees so many autistic kids with chronic constipation and other chronic bowel issues, but confessed that the only "solutions" he knows to do for these kids is to give Miralax for the constipation, Zantac or other acid reducers for the reflux and allergy testing. When I told him we working with Dr. Krigsman as well, and how well he was doing with the elemental diet, he was so relieved and happy for us. He was very interested in what kinds of tests and treatments Dr. Krigsman was prescribing, and even wrote a nice letter to our insurance company in order to get things approved for my son to be scoped by Dr. Krigsman. He was so sweet, and I felt so badly for him. He wanted to help, but didn't really know how.

John Stone

What is troubling is the extent to which the projects of denying that vaccines cause autism and that there is an association between autism and bowel disease go hand in hand. As we know, earlier this year a member of the UK Joint Committee on Vaccines and Immunisation, published - without revealing his conflict - a study which was a direct attack on Wakefield et al, focussing on the issue of bowel disease.

http://adc.bmj.com/content/94/7/497.full/reply#archdischild_el_8593

http://www.ageofautism.com/2009/08/autism-experts-only-seem-to-know-what-doesnt-work.html?cid=6a00d8357f3f2969e20120a51b2340970b

Meanwhile, the General Medical Council hearing against the three doctors, who include Simon Murch, has effectively been trying to make out that the children in the 1998 study did not have serious GI symptoms:

http://www.ageofautism.com/2009/02/the-wakefield-affair-and-meadow-syndrome-at-the-gmc-an-open-letter-to-the-president.html#more

It could not be a greater condemnation of the medical profession that in order to maintain their belief systems and their credibility they have to pretend sick children are well. Unfortunately, they seem to have been taking the expert advice of eccentric journalist, Brian Deer:

http://www.ageofautism.com/2009/05/new-uk-film-selective-hearing-brian-deer-and-the-gmc.html

I am inclined to think that Prof Murch is altogether more credible.

Casey

See what I mean? Mamma of the year right here folks!

Thanks Katie!!

Parent

Thank you, again, Katie!

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