Gryffin's Tail has moved!

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Monday, May 24, 2010

Dr. Wakefield Removed from the United Kingdom’s Medical Register

Statement prepared by: Rebecca Estepp
Contact # (949) 640-4401 ext. 106

May 24, 2010

The General Medical Council (GMC) erased Dr. Andrew Wakefield from Britain’s Medical Register earlier today. TACA is deeply saddened by these unnecessary and vindictive actions. We will continue to support Dr. Wakefield.

Repealing Dr. Wakefield’s license does not erase the last 12 years of his work for children and their families. The GMC cannot revise history with this action. There are thousands of families that witnessed their children regress into autism after childhood vaccinations. Dr. Wakefield is a hero to these families.

TACA is very grateful that Dr. Wakefield will continue his much needed research into vaccine safety, autism and bowel disease.  Dr. Wakefield’s research is not a threat to vaccine programs world wide. The real threat comes from the cozy relationships between vaccine regulators and industry.

One in four parents already believes that vaccines can cause autism in children. The autism community has been asking for independent research and transparency in the vaccine program for more than ten years. Until this happens, parents will continue to lose confidence in this program. Revoking Dr. Wakefield’s medical license will only cause parents to become more leery of the medical establishment and the vaccine program as a whole.

The following studies replicated Dr. Wakefield's original findings:

Gonzalez, L. et al., "Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms." Arch Venez Pueric Pediatr, 2005;69:19-25.

Balzola, F., et al., "Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsule enteroscopy: Another piece in the jig-saw of the gut-brain syndrome?" American Journal of Gastroenterology, 2005. 100(4): p. 979- 981.

S. Walker, K. Hepner, J. Segal, A. Krigsman "Persistent Ileal Measles Virus in a Large Cohort of Regressive Autistic Children with Ileocolitis and Lymphonodular Hyperplasia: Revisitation of an Earlier Study" [IMFAR May 2007]

Balzola F et al. "Autistic enterocolitis: confirmation of a new inflammatory bowel disease in an Italian cohort of patients." Gastroenterology 2005;128(Suppl. 2);A-303.

Madsen KM et al. A Population-Based Study of Measles, Mumps, and Rubella Vaccination and Autism (2002). N Engl J Med 347 (19): 1477–82

More Information

Watch Today show featuring Dr. Andrew Wakefield

Dr. Wakefield’s GMC Findings (January 28, 2010)

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.

Saturday, May 22, 2010

Dr. Bob Sears' Response to Hyman Diet Study

Allergen free Diet Can, and Does, Help Many Children with Autism

I've seen over 500 children with autism in my pediatric practice over the past 10 years, and in my experience the majority have benefited from the diet. Children with chronic GI symptoms, such as loose stools or constipation, seem to benefit the most, which would make sense. But I've seen some children without any GI symptoms improve on the diet.

So when I see a study come out that conflicts with my extensive clinical experience, I take a very close look at the study before I decide whether or not it should influence my medical decision-making. This new study, published by Dr Susan Hyman on May 19, 2010 from the University of Rochester definitely does not change my opinion of the possible effectiveness of the diet for children with autism. First, this was a tiny study of 14 children. The medical community rarely considers such a small study clinically useful. A much larger study would have more weight. Second, the study didn't allow for enough time to pass for the diet to create enough improvement to be clinically significant. In my experience, parents often see results from casein elimination within a few weeks. But gluten often takes longer, up to several months before benefits can be seen. Third, gluten and casein aren't the only allergens that children have to eliminate. In my practice, I eliminate all allergic foods at the same time to allow for maximum healing. A very common allergen on the diet is soy. It is possible that some children in this study had other foods that needed to be eliminated and weren't. Finally, two children in the study were excluded because they tested extremely allergic to gluten (positive TTG test). Such kids would be virtually guaranteed to benefit from the diet. It is likely the researchers wanted to determine if the diet would help the general population of kids with autism and not just those with severe gluten allergy. But including those two children in the study could have resulted in an outcome more in favor of the diet.

The mainstream medical community looks for treatments with a very high success rate. For example, if an antibiotic only improves half of kids with an ear infection, such an antibiotic wouldn't be approved. A drug or treatment needs to work very well in most patients in order for it to be adopted. Autism is unique, however, in that many treatments work extremely well, but not always in a high percentage of children. Does that mean we shouldn't offer such treatments? Not at all. If I have a particular treatment that would help even 20% of children with autism, I would offer it to all children. Those that do benefit can be blessed by improvement they wouldn't otherwise have. When it comes to the diet, my success rates are much higher than 20%. I would say that at least 75% of parents report positive results, and many of those report amazing results.

I'm not going to let a very small study such as this one prevent me from offering the hope of healing to parents, and I hope that parents everywhere consider trying the GFCF diet for their child.

Additional studies that are positive for Autism and dietary invention can be found at

Dr Bob Sears - Sears Pediatrics
And TACA Physician Advisory Board

Popular Autism Diet Does Not Demonstrate Behavioral Improvement

You decide:  What do you think of this study?  Let me know what you think.

ScienceDaily (May 20, 2010) — A popular belief that specific dietary changes can improve the symptoms of children with autism was not supported by a tightly controlled University of Rochester study, which found that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

The study is the most controlled diet research in autism to date. The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein. Unlike previous studies, they also controlled for other interventions, such as what type of behavioral treatments children received, to ensure all observed changes were due to dietary alterations. Past studies did not control for such factors. And although no improvements were demonstrated, the researchers acknowledged that some subgroups of children, particularly those with significant gastrointestinal (GI) symptoms, might receive some benefit from dietary changes.

"It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn't show significant benefits," said Susan Hyman, M.D., associate professor of Pediatrics at Golisano Children's Hospital at the University of Rochester Medical Center (URMC) and principal investigator of the study which will be presented on May 22 at the International Meeting for Autism Research in Philadelphia. "However, the study didn't include children with significant gastrointestinal disease. It's possible those children and other specific groups might see a benefit."

In response to widespread parent-reported benefits, URMC initiated the trial in 2003 to scientifically evaluate the effects of the gluten-free and casein-free diet, which eliminates wheat, rye, barley and milk proteins. Parent observation has played an important role in earlier treatment discoveries in children with autism, such as melatonin's benefits for sleep.

Hyman's study enrolled 22 children between 2 ½- and 5 ½-years-old. Fourteen children completed the intervention, which was planned for 18 weeks for each family. The families had to strictly adhere to a gluten-free and casein-free diet and participate in early intensive behavioral intervention throughout the study. Children were screened for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency. Other volunteers who were excluded were unable to adhere to the study requirements. The children's diets were carefully monitored throughout the study to make sure they were getting enough vitamin D, iron, calcium, protein and other nutrients.

After at least four weeks on the strict diet, the children were challenged with either gluten, casein, both or placebo in randomized order. They were given a snack once weekly with either 20 grams of wheat flour, 23 grams of non fat dried milk, both, or neither until every child received each snack three times. The type of snack was given in randomized order and presented so that no one observing -- including the family, child, research staff and therapy team -- knew what it contained. The snacks were carefully engineered to look, taste and feel the same, which was an exercise in innovative cooking. In addition, the nutrition staff worked closely with the families to make a snack that met their child's preferences. Casein was disguised in pudding, yogurt or smoothies and gluten in banana bread, brownies, or cookies depending on the child's food preferences.

Parents, teachers and a research assistant filled out standardized surveys about the child's behavior the day before they received the snack, at two and 24 hours after the snack. (If the child's behavior wasn't usual at the scheduled snack time, the snack would be postponed until the child was back to baseline.) In addition, the parents kept a standard diary of food intake, sleep and bowel habits. Social interaction and language were evaluated through videotaped scoring of a standardized play session with a research assistant.

Following the gluten and casein snacks, study participants had no change in attention, activity, sleep or frequency or quality of bowel habits. Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance. That means because of the small difference and the small number of participants in the study, the finding may be due to chance alone.

The investigators note that this study was not designed to look at more restrictive diets or the effect of nutritional supplements on behavior. This study was designed to look at the effects of the removal of gluten and casein from the diet of children with autism (without celiac disease) and subsequent effect of challenges with these substances in a group of children getting early intensive behavioral intervention.
Hyman said, "This is really just the tip of the iceberg. There are many possible effects of diet including over- and under-nutrition, on behavior in children with ASD that need to be scientifically investigated so families can make informed decisions about the therapies they choose for their children."

This study was funded by the NIH's National Institutes of Mental Health Studies to Advance Autism Treatment Research and National Center for Research Resources (NCRR).

Tuesday, May 18, 2010

More successes!

Never again!

Second, no more diapers!  He has been day trained for years but we have never been able to get rid of the night diapers.  He hated that he wore them, often telling me he's not a baby, but they were necessary.  We tried several times to just let him go without and every time it was a wet, urine filled disaster. Not so anymore!  He has been diaper free for about three weeks now and has only had 4 accidents.  They seem to be coming on faster as I haven't chelated since spring break where I chelated the entire week and brought about these wondrous changes.  I intend to return to our regularly scheduled chelation program this weekend and hopefully, we'll be able to banish the accidents to the fiery inferno of hell to which they belong.

I'll keep you posted on what happens!
We started AC chelation several months ago and couldn't be more pleased with the results.

Since chelating, we have had two very beautiful successes happen.

My son now eats what we give him.  Yes, sometimes I have to make him and feed him myself but he does it with very little complaint.  This is huge!  I'm sure you can all relate to the dilemma of picky eaters.

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