Nodding syndrome.
Ever heard of it? Well, up until a few days ago I hadn't. That is before coming across articles on the topic
by Richard Idro and colleagues* (open-access) and
Angelina Kakooza-Mwesige and colleagues** (open-access). Whilst not specifically my line of expertise or interest, I was intrigued to read about how nodding and other symptoms of the epileptic variety, at least in some cases, seemed to be precipitated by food and
showed a potential nutritional angle.
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| Curving spacetime @ Wikipedia |
Granted, the hows and whys of nodding syndrome are still a mystery, but the first thought that went through my mind was whether any specific types of food(s) might be implicated. Y'know in a similar vein to
Marios Hadjivassiliou and the notion of gluten ataxia*** for example? Just speculating...
With all that talk of food and behaviour in mind there are a few things that piqued my attention towards
the paper by Herbert & Buckley**** seemingly part of
a string of articles looking at the topic of dietary intervention published in the
Journal of Child Neurology. The first thing was the title of the paper: "
Autism and Dietary Therapy" simply because I have some research interest in this area. Perhaps
I might have mentioned it before...
Next was the authorship list, focused on at least one of the authors,
Dr Martha Herbert (no disrespect intended to Dr Buckley). Alongside
an already distinguished career in autism research, Dr Herbert is also making some waves with her new book: '
The Autism Revolution' co-authored with Karen Weintraub who wrote
that very interesting Nature article on autism prevalence a few years back.
Finally, a sentence from the paper abstract: "
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".
Such a dramatic description of change in presentation might once have been received with a very, very sceptical eye. Indeed I assume that still might be the case in some quarters. The publication of the Deborah Fein study (see
here and
here) on optimal outcome in relation to autism in conjunction with the rising tide of research looking at
the potential benefits of early intervention for cases of autism, have perhaps made such observations slightly more 'acceptable', at least
to some elements of the autism research community. Indeed I was also very taken by
the recent BBC interview of Kristine and Jacob Barnet which discussed similar changes to symptom presentation in a young man now tipped for some absolutely amazing things. The fact that said changes detailed in the Herbert & Buckley paper seemed to occur at the same time that a "
gluten-free casein-free ketogenic diet" was being followed is... interesting.
Now round about this time, some people might be thinking what does this study actually show? A case study of a girl / young woman with autism where comorbid epilepsy was controlled both by anti-seizure medication and
a ketogenic diet (yes, such a diet
has been linked to the control of cases of epilepsy). Said dietary intervention originating in the gluten- and casein-free (GFCF) dietary domain. As time went on, seizures dissipated and over time her clinical scores on the
CARS reduced indicative of quite a change in her autism presentation.
One of course might say, a single case study, it means very little in the grand methodological scheme of things. That is unless you think back to the mantra '
if you've met one person with autism, you've met one person with autism' highlighting the power of the N=1 where autism is concerned (
see here). That and the interesting viewpoint expressed by people like Gary Mesibov on the issue of
evidence-based medicine when applied to a extremely heterogeneous condition like autism, sorry
the autisms.
I am interested in the coincidental factors reported in this paper. I have questions: did the (almost) resolution of the epileptic symptoms carry any influence on the presentation of autism? In particular, I'm thinking back to that very interesting piece of research which suggested one particular type of autism (and epilepsy) might be related to a metabolic issue with the branched-chain amino acids (
see here). Is this a potential model for that epilepsy-autism relationship for some people on the spectrum? What about the "
resolution of morbid obesity" also reported; could this similarly have had any effect on symptom presentation?
I have questions about the role of the diet adopted in this case. A ketogenic diet, as well as finding some value in cases of epilepsy or seizure disorders, has also been looked at with autistic behaviours in mind. Yep,
at least one trial***** albeit preliminary, suggested that this might be an option for some people on the spectrum bearing in mind I'm not making any recommendations. Down the years I've also heard anecdotal reports about how the GFCF diet might have aided in the reduction/amelioration of certain signs and symptoms linked to autism. The paper by Stephen Genuis (
see this post) is one example. Just before you say something along the lines of '
there is no methodologically sound experimental evidence for dietary effect'; well, yes and no (
see here) accepting the need for much more rigorous experimental study and that the evidence is not all one-way (
see here).
If anyone has alternative explanations for the change in symptoms outside of just healthier eating,
any placebo effect or just the research attention paid to the participant in question, please feel free to post them in the comments section. That being said,
no mumbo-jumbo please like I've being reading today which
has been roundly answered by psychiatry. Going back to the Fein study and the promise of more details to come, I'll be interested to see whether they report any of their optimal outcomers were following such a dietary intervention alongside other interventions.
And finally... one of the main points I take from the Herbert & Buckley paper is how it underscores the need for (a) a greater, more controlled look at the potential efficacy of dietary intervention - in whatever form - in relation to cases of autism, including the important categorisation of 'best' and 'non' responders, and (b) mechanisms... how on earth could removal of specific foodstuffs affect the presentation of autism?
Leaky gut? Changes to
the various populations of our bacterial masters? Allergy or intolerance
similar to that noticed in cases of schizophrenia for example? I've talked about some of these potential options in a previous paper (
see here******) if you're at all interested. (Sorry about the blatant self-promotion).
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* Idro R.
et al. Nodding syndrome in Ugandan children—clinical features, brain imaging and complications: a case series.
BMJ Open 2013; 3: e002540.
** Kakooza-Mwesige A.
et al. Nodding Syndrome in Ugandan Children and Adolescents: Menage A Trios of Epilepsy, Autism, and Pediatric Catatonia.
Autism 2012; 2: e112.
*** Hadjivassiliou M. & Grünewald R. The neurology of gluten sensitivity: science vs. conviction.
Practical Neurology. 2004; 4: 124–126.
**** Herbert MR. & Buckley JA. Autism and dietary therapy.
J Child Neurol. May 2013.
***** Evangeliou A.
et al. Application of a ketogenic diet in children with autistic behavior: pilot study.
J Child Neurol. 2003; 18: 113-118.
****** Whiteley P.
et al. How could a gluten- and casein-free diet ameliorate symptoms associated with autism spectrum conditions?
Autism Insights 2010; 2: 39-53.
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Herbert, M., & Buckley, J. (2013). Autism and Dietary Therapy: Case Report and Review of the Literature Journal of Child Neurology DOI: 10.1177/0883073813488668
