Age of Autism Comment of the Week: 1/9/10
- Dr. Caroline Traa is our winner for her comment on the post, Polly Tommey on Dr. Wakefield in Autism File Magazine: "Fantastic piece Polly! Your courage, integrity and truthfulness say what so many people want to have heard.... Yesterday I had to clear out my daughters bowel. I do this almost every month. Why? Because it doesn't work properly. It works a whole lot better now than it used to, thanks to Andy Wakefield and his courageous colleagues at the Royal Free before they were silenced..... We are the 'lucky' ones! To get a diagnosis of bowel disease we had to come to the States from Scotland, thank you Arthur Krigsman.... She is 12 years old and at 3 am I was changing nappies, dealing with diarrhoea sprayed all over her bedroom carpet, and lying awake all night beside her. For those of you that believe bowel disease doesn't exist, come spend a weekend in my home. Our family owe a debt of gratitude to Andy and all the other Autism parents, practitioners, advocates, too many to mention. We won't shut up because it all happens to be true and we really don't want another generation of children, and their families, to suffer like ours have. Truth can never be silenced. Fight on.... All Our Love Caroline, Harry, Rebecca & Cameron Traa Scotland xx."
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I hope oneday all the comments of the week might be put together in a book. They comprise the soul of todays experience of autism. Im sending this comment to my friend who is a GI specialist in UK
Posted by: Tas Murah | February 11, 2014 at 02:25 AM
I would like to take the opportunity to respond to some important points brought up in a post by Judy Converse. Judy questioned whether the individual nutrient status of the children in the GFCF study by Elder was determined to see if any of the children were anemic or low in zinc at the start of the trial. Judy posted that,
“GF CF diets often fail when other nutrition variables are not repaired first, in my 10 years' clinical experience with hundreds of children using these tools.”
Nowhere in the GFCF study by Elder did they make any mention of testing for any nutritional status in the children. But I would like to bring the readers attention to an article I read subsequent to writing my above essay.
The article published by Genuis et al. in the J. Child Neurol 2010 presents a case history of a 5 year old child diagnosed with severe autism whose symptoms of autism rapidly abated upon diagnosis and treatment for celiac disease CD. His accompanying nutrient deficiencies were treated as well.(1) This well documented case history clearly illustrates some of the concerns voiced by Judy so it deserves mention here.
The first thing that stands out when reading this case history was the difficulty the child had in getting a CD diagnosis. The authors report on the many doctors who had been consulted and the wide range of tests that had been run including, “A magnetic resonance imaging (MRI), electroencephalography (EEG), optometry assessment, blood work and genetic testing…” on the case child as a 3 year old (1). Clearly, much time had been spent and money laid out for testing and doctor hopping but all to no avail. Finally at the age of 5 years, a nutritional biochemistry assessment was done which revealed, “inadequate levels of fat-soluble vitamins, including notable deficiencies of vitamins A, D, and E as well as low coenzyme Q10 and folate.” (1) Other findings included low zinc and ferritin with abnormal fatty acid levels. The case child was fortunate because this particular doctor not only took the time to run essential tests, but furthermore he knew the significance of the abnormal biochemical findings and tested the child for celiac disease. Upon serological confirmation of CD, a gluten free diet was instituted. This is the point where the story differs significantly from what might have occurred had a typical GI doctor consulted with this family. Understanding the significance of nutrient deficiencies, the doctor on this case took great care to assure his patient became replete in all his missing nutrients in addition to placing him on a gluten free diet. “Within 3 months, his functioning had improved so much that he no longer required an individualized learning program and was able to enter a normal classroom with no aide.” (1) Genuis makes reference to a paper by Barcia and colleagues that, “recently found an increased incidence of intestinal biopsy-confirmed celiac disease in their patients with pervasive developmental disorders (3.3%) compared to the normal population (0.9%).” (1) In contrast to the Buie consensus paper, the authors of this study believe all children with autism should be screened for celiac disease even if they do not present with GI symptoms.
And I agree!
I commend the authors of this paper for bringing out several absolutely excellent points, which I share for you here in my own paraphrasing.
The body is complex and requires that all essential nutrients be available in optimal quantities to function correctly.
The medical profession needs to update its attitude of considering nutrient manipulation to be in the realm of “alternative medicine” and come into alignment with the massive amount of published medical literature showing “nutrition is a well-recognized common cause of illness.”(1)
The authors do not believe in a “shot-gun” approach to treating with supplements but rather believe in testing for the specific biochemical abnormalities in each individual and designing a program custom fit to the findings of lab tests.
In closing I leave you with one final quote from this superb paper,
“Recognizing that neuropsychiatric dysfunction exacts an enormous cost both financially and personally, micronutrient screening is recommended for all children with significant central nervous system dysfunction. Such screening should include plasma amino acid status, serum screen for coenzyme Q10 and fat-soluble vitamins, red blood cell mineral status, serum folate, plasma fatty acid profile, and urine organic acids to assess functionality of nutrient physiology.” (1)
And I agree!
Laurette Janak January 11, 2010
1.) Celiac Disease Presenting as Autism
Genuis SJ, Bouchard TP.
J Child Neurol. 2010 Jan;25(1):114-9
Posted by: Laurette Janak | January 11, 2010 at 09:39 PM
First of all congradulations are in order! Congradulations Caroline! I hope you enjoy your t-shirt! I aspire to have one of my own one of these times, I am certainly trying!
On another note, I heard something interesting over the weekend. Something intelligent said durring a Chris Rock comedy special that caught my ears!
"They ain't look for no cure!! What's the last thing they cured? Polio! 40 years ago!! And it p*^ed them off!! Lost millions of dollars! They ain't trying to cure anything! There isn't any MONEY IN THE CURE!! The money is in the COME BACK, in the treatment!"
He was talking about Aids and various other diseases, but it kinda hits home, doesn't it?
Posted by: Darian (nickname) | January 11, 2010 at 08:42 AM
This is a most touching and appropriate comment. I often wish for all parents to speak out in every way possible about their experiences with autism. We cant expect support when so many people still think autism means the child watched too much tv or was just "born that way" I hope oneday all the comments of the week might be put together in a book. They comprise the soul of todays experience of autism. Im sending this comment to my friend who is a GI specialist in UK.
The sad history of GI troubles in autism tells us one unfortunate truth- Brontosaurus in a bog must have been more fleet of foot than modern medicine facing a previously unknown challenge
Posted by: Cherry Sperlin Misra | January 10, 2010 at 02:34 AM
This is an excellent choice, an excellent comment, describing so well what so many people are experiencing, and why Dr. Wakefield's work is so important and good and needed.
I am so sick of people saying that parent perceptions are so affected by denial or wishful thinking or the placebo effect. Did Dr. Traa imagine her daugther's diarrhea and then imagine that it has gotten a lot better with appropriate treatment? If so, her hallucinations are no doubt shared by all the others who have helped clean up poop over the years!
Posted by: Twyla | January 09, 2010 at 05:12 PM