New Study by Dr. Martha Herbert & Dr. Julie Buckley in Journal of Child Neurology on Autism and Dietary Therapy
Journal of Child Neurology
Autism and Dietary Therapy
Case Report and Review of the Literature
Martha R. Herbert, PhD, MD1⇑
Julie A. Buckley, MD, FAAP2
1Pediatric Neurology and TRANSCEND Research, Massachusetts General Hospital, Boston, MA, USA
2Pediatric Partners of Ponte Vedra, Ponte Vedra Beach, Florida; Nova Southeastern University, Fort Lauderdale, FL, USA
Martha R. Herbert, PhD, MD, Pediatric Neurology, TRANSCEND Research, Massachusetts General Hospital, Boston, MA 02129, USA. Email: [email protected]
Author Contributions MRH and JAB contributed equally to this work.
ABSTRACT:
We report the history of a child with autism and epilepsy who, after limited response to other interventions following her regression into autism, was placed on a gluten-free, casein-free diet, after which she showed marked improvement in autistic and medical symptoms. Subsequently, following pubertal onset of seizures and after failing to achieve full seizure control pharmacologically she was advanced to a ketogenic diet that was customized to continue the gluten-free, casein-free regimen. On this diet, while still continuing on anticonvulsants, she showed significant improvement in seizure activity. This gluten-free casein-free ketogenic diet used medium-chain triglycerides rather than butter and cream as its primary source of fat. Medium-chain triglycerides are known to be highly ketogenic, and this allowed the use of a lower ratio (1.5:1) leaving more calories available for consumption of vegetables with their associated health benefits. Secondary benefits included resolution of morbid obesity and improvement of cognitive and behavioral features. Over the course of several years following her initial diagnosis, the child’s Childhood Autism Rating Scale score decreased from 49 to 17, representing a change from severe autism to nonautistic, and her intelligence quotient increased 70 points. The initial electroencephalogram after seizure onset showed lengthy 3 Hz spike-wave activity; 14 months after the initiation of the diet the child was essentially seizure free and the electroencephalogram showed only occasional 1-1.5 second spike-wave activity without clinical accompaniments. (see the pdf of the abtract
HERE.)
"This neuro-immuno-gastro-gut-flora conversation keeps recurring. :) What if we put together a research protocol around measuring the gut flora genome at different points before and during the change in diet."
Health problems independent of autism et al are STRONGLY related to a healthy BODY and mind. "vaccination" puts a heavy strain on all children; those with the strongest bodies have less risk of IMMEDIATE injury, although IMO ALL children are injured by EVERY "vaccination".
http://healthyprotocols.com/2_Dr_Moulden.htm
For this reason when attempting to recover a child from autism we should attempt, in addition to autism specific actions, to take ALL possible steps to bring that child to OPTIMAL HEALTH even though these steps have nothing to do with autism specific actions.
Posted by: Lou | May 27, 2013 at 01:25 PM
I think it is only appropriate to share the fact that my son is yet another child who has been recovered from autism biomedically. My proof? All u hv to do is compare his MDT eval report frm 3 wks ago to the report of the same MDT evals that were done 3yrs prior. And 3 yrs ago he had already been GFCF for 2 whole years. So, he has been GFCF for 5.5 yrs thus far and he will continue be. Except from now (5/6/13) on he is gluten free, casein free and autism free. HA!!!
Posted by: Thinkingmama | May 26, 2013 at 02:21 AM
Hmmm Carol;
Funny that you mentioned this.
Fourth day on it my husband and I both woke up hurting with somekind of muscleaches from the tip of our noses to the tips of our toes.
We also on that day got a yeast infection (we thought)the next day - we were find/okay???
I have heard a lot of people talk of this, but like everything else in this journey - I thought hogwash - only to learn - oh yeah - these guys were not imagining this.
I looked in Dr. Atkins book and he mentions this too -- and gave several theories of why he thought it was happening, but he really did not know.
I do like the idea of using MCT oils. I have included that oil.
I think it is more than an allergy to gluten and cassein. It really is the carbohydrates that is driving this bus.
Posted by: Benedetta | May 25, 2013 at 10:46 PM
Benedetta,
Thanks for answering. I like Atkins in theory, but I have to say I had a baddish experience with it both times. I got kind of road-ragey though ordinarily I'm a pretty placid driver. I did take his idea of eating fats with carbs to heart, though.
I might be interested in the idea of taking an enzyme supplement as a GFCF diet substitute. That's something the family could do pretty easily. Seems worth a try.
Posted by: Carol | May 25, 2013 at 09:57 PM
Carol;
During the teen age years the brain grows at an explosive rate. It is still developing.
12 is a very good age.
John Hopkins Medical University did a lot of research on the Atkins diet as well as the low glycemic diet.
Adults and teenagers demand a less restictive diet. For that reason it would be the best choice. We use to be on a 15 to 20 carb a day Atkins diet. I asked my family to just try it for two weeks.
Dr. Atkins has a two week menu plan and recipes in his book and it was a steep learning curve.
I failed many times on the Ketogenic diet because I had to have medical help - and that was just not there.
Later we all moved on from there to less restictive diet with more carbs -- Dr. Atkin's diet is in three phases-- basically it ends up being a low glycemic diet - or slow release. That is okay too because research says 30 to 60 carbs a day can be consumed if they are slow release.
If you are like me, the whole thing of a diet had to be supported by the whole family. Esp when I was fighting for the health of my other family members too.
That was the biggest mountain to climb for me.
Posted by: Benedetta | May 25, 2013 at 09:35 AM
Taximom: Nothing like adding a little fuel to the fire . . .
My father remembers it being used in his house, and I remember it being used in our house. And I remember loving my mother so much for buying me some stuff to try and get rid of the freckles on my skin, after her many failed attempts to convince me freckles were fine.
Bob - Thank-you for the link. Sad that the information is so old, yet it is still overshadowed by even older mythology. Good to keep on hand. How much time can info like this save parents w/newly diagnosed children?
And Wow! on the main article - Herbert/Buckley case study. How many birds did they hit with one stone!
Posted by: Jenny | May 25, 2013 at 08:46 AM
I have always thought of my daughter as neurotypical (despite the fact that when she was little she wouldn't say hello or good-bye to friends she'd known for years). I've come to think that she has a kind of mini-Asperger's without the physical clumsiness.
So do you, my panel of experts, think it's too late for a gluten-free casein-free diet to have an effect? (She's twelve now.) Methylated B12? Any other advice?
Posted by: Carol | May 25, 2013 at 05:51 AM
My kiddo has an identical story and would be perfect for a repeat performance on demand. No longer scoring on the Autism scale but could. All I need do is have him eat gluten or casein and within 20 minutes he would loose a decade crawling out of this hell.
Thank you to that parent that said "Unless your Psychologist is also a GI doc, Autism has does not rule out any other system dysfunction."
Posted by: L | May 25, 2013 at 12:11 AM
@Jenny: ironically, in "A Tree Grows In Brooklyn," Francie's father scrubbed her leg with mercurochrome.
Posted by: Taximom5 | May 24, 2013 at 11:44 PM
Bob - I know, I really do. My brain does, anyway. My heart keeps hoping for better. I'll read the link, especially since the info was before I even began to fathom even the tiniest background details to all this. I'm sure it will shed more light on this for me.
It truly never ends and I come across tangents in the most unlikely places. Have you ever read "A Tree Grows in Brooklyn." Written in 1943, there's an entire chapter dedicated to how invasive vaccines are, and how can the U.S. call itself the land of the free when an innocent child cannot get their rightful education without a vaccine and how horrible to shoot dirty germs directly in the blood and the pomposity of the doctors doing it. But the public health authorities just labeled immigrants "stupid" and uncivil to question it and treated them like dirty animals, and the immigrants felt they had no choice but to do it. After the little girl's arm become swollen and infected, her father scrubs and scrubs at the vaccine wound, to get rid of this invasion on his child's body, eerily similar to how he scrubbed and scrubbed her leg to make her feel clean again after someone attempted to rape her. It was a good and just comparison.
And I had just wanted to sit down and read some harmless fiction having nothing to do with current events!
Posted by: Jenny | May 24, 2013 at 09:05 PM
"Following her initial diagnosis, the child’s Childhood Autism Rating Scale score decreased from 49 to 17, representing a change from severe autism to nonautistic, and her intelligence quotient increased 70 points."
What great news!
The Ketogenic Diet is also showing GREAT results in cancer treatment.
http://healthyprotocols.com/2_sugar_and_cancer.htm
Like most other natural autism treatment IMO this can be combined with most natural treatment parents are currently using to recover their children from autism.
The gluten-free, casein-free, GMO free, sugar free, wheat free regimen should be IMO a standard first step as it is GOOD for most of us.
Posted by: Lou | May 24, 2013 at 06:56 PM
So who should we have meet us for tea, coffee and (gf?) scones?
cellular biologist
gastroenterologist
immunologist
neurologist
parasitologist
dev ped
nutritionist
This neuro-immuno-gastro-gut-flora conversation keeps recurring. :) What if we put together a research protocol around measuring the gut flora genome at different points before and during the change in diet.
Posted by: cs | May 24, 2013 at 02:48 PM
@ Jenny
My friend .. I think the IACC has spent too much time asking "experts", such as, Dr. Perrin to "listen" to ideas and research that others have been promoting for nearly a full decade now.
I hope you did read the Discover magazine article I mentioned in my comments:
http://tinyurl.com/2pbkoz
This article .. at the time in 2007 when first published .. was the first article that I had seen exploring reasons .. other than genetics .. for contributing to the "cause" as well as the "treatment" of autism. In fact, this article was held aloft at the conclusion of a US Senate hearing on autism research as an example of where researchers oughts to be doing their work.
Admittedly, I am having a difficult time understanding why the IACC has proven so ineffective over the years .. but .. I hope we can agree the IACC can begin to regain our trust and confidence by clearly recognizing the credibility of Dr. Herbert and Dr. Buckley's research.
Posted by: Bob Moffitt | May 24, 2013 at 01:51 PM
Excellent job, so pleased to see this. Dr Buckley, in my view, appears way ahead of the curve on this stuff.
I have experience of a child with severe infant reflux, severe food intolerances, severe diarrhoea from birth. Having seen the head of Gasteroenterology at specialist childrens hospital from 6 weeks to age 4 symptoms had barely improved. Taking on the protocol described in this study was the single most significant intervention. Although we were not treating autism it transformed the child.
Posted by: Letthembegot | May 24, 2013 at 01:39 PM
Bob M:
"In an effort to address this urgent unmet need the IACC has invited Dr. Perrin, President of the American Academy of Pediatrics, to attend the July 9th meeting to discuss what can be done to improve health care for children with autism. This is your chance to let them know what you think!"
It doesn't actually say that he's coming to lecture on the issue, (and we know now how Safeminds picks its words carefully, don't we) maybe they are having him in to listen to the concerns & evidence, so that they cannot ever say the AAP did not understand the scope of certain things, put him on the spot a bit? Maybe push the knowledge out into practice. Close the gap between factual science and application. Question him as to the organization's conflicts of interest? One key person's buy in? Maybe capitalizing on recent congressional involvement? Was it an invitation he couldn't refuse, after having declined other more direct invitations to talk w/autism organizations? Providing alternatives to pharma promoted mythology?
Not saying I back his presence, just trying to understand it myself.
Are there any other "guests" on the invite list beside him? Maybe that would shed some light.
Posted by: Jenny | May 24, 2013 at 12:43 PM
John O'Neill
http://www.ncbi.nlm.nih.gov/pubmed/23294191
http://www.ncbi.nlm.nih.gov/pubmed/22332768
http://www.ncbi.nlm.nih.gov/pubmed/16499770
http://www.ncbi.nlm.nih.gov/pubmed/21126887
Oppps this is mostly about elipepsy --- now wait -- in case you don't know there is a high percentage of kids with autism that has epilespy and seizures.
But is that too much of a reach????
I don't think so.
Posted by: Benedetta | May 24, 2013 at 12:30 PM
"Thank you to Dr. Martha Herbert and Dr. Julie Buckley. Of special significance is that we have an academic researcher working in conjunction/cooperation with a practicing physician in order to publish academically rigorous case studies that may have an immediate impact on patients. Sure beats another eye gaze study in Amazonian water rats, eh? :)"
It sure does beat another eye gaze study in Amazonian water rats .. which only makes the most recent AoA article concerning the woeful IACC even more disturbing. Here is what that recent article said:
Tell IACC and AAP How Sick Your Autistic Child Is And About Unmet Medical Needs
"The IACC (NIH’s Interagency Autism Coordinating Committee) added the existence of co-occurring conditions associated with autism in the strategic plan for autism research back in 2011, acknowledging the need to better understand the scope and cause of these conditions, and the need for multidisciplinary heath assessments and effective treatment guidelines. But to date, far too little progress has been made. In an effort to address this urgent unmet need the IACC has invited Dr. Perrin, President of the American Academy of Pediatrics, to attend the July 9th meeting to discuss what can be done to improve health care for children with autism. This is your chance to let them know what you think!
Here's what I think. It is absurd the IACC has sought the help of Dr. Perrin, President of the American Academy of Pediatrics .. instead of inviting Dr. Martha Herbert and Dr. Julie Buckley to "address the urgent unmet need for multidisciplinary health assessments and effective treatment guidelines."
Surely the crack IACC is well aware of Dr. Herbert's work over the years .. mentioned here in Discover Magazine's article by Jill Neimark titled: "Autism: It's Not Just In the Head".
http://tinyurl.com/2pbkoz
When I first read this excellent article in 2007 ... I thought it was going to prove truly "groundbreaking" in providing the "health assessments and effective treatment guidelines" to address the "urgent unmet needs" that continue to elude the IACC to this day.
Can someone explain to me why the IACC invited Dr. Perrin to address these "unmet urgent needs" .. rather than Dr. Herbert and Dr. Buckley? Am I missing something here?
Posted by: Bob Moffitt | May 24, 2013 at 11:30 AM
Thanks John O'Neill , but perhaps you will listen to a parent (or if you are a protector of vaccine reputation then perhaps not ), but I can tell you in my own experience that when we moved to the SCD diet with our vaccine poisoned child , it was the equivalent of switching on a light switch !
Criminal actions under the guise of healthcare (ie vaccines)will result in criminal prosecutions regardless of any Government granted immunities (because we the people will be tearing those immunities up - those vaccine protections are worthless - and people will be spending much of the rest of their lives incarcerated for these crimes against humanity, and the profits made by lies in the vaccine industry will be fully confiscated .)
Posted by: Farmer Geddon | May 24, 2013 at 09:10 AM
John O'Neill
Yes, the trouble with Buie's recent paper is that it adds no new research (unlike the above paper) but in many cases (not of course all) a gluten free diet is of benefit or absolutely essential, and he undermines the role of parents trying to negotiate with know-it-all professionals who can't be bothered or who are deeply prejudiced.
Posted by: John Stone | May 24, 2013 at 09:06 AM
More on a similar subject.
http://www.ncbi.nlm.nih.gov/pubmed/23688532
Posted by: John O'Neill | May 24, 2013 at 08:31 AM
Excellent work Dr Buckley & Dr Herbert .
Once again science proving the mainstream view is wrong .
The diet treatments for autism work , and the mainstream cannot deny this for very much longer .
Posted by: Farmer Geddon | May 24, 2013 at 06:31 AM