Since long-term steroid use has side effects, there have been no large long-term
trials. There is plenty of anecdotal
evidence, particularly from the US. We
saw a paper on Immunomodulatory Therapy, by Michael Chez, which discussed the
benefits of Prednisone, a very cheap oral steroid.
In the days
before inhalers for asthma, it was low dose oral prednisone that kept many sufferers
from an early death. It did result in
reduced height, but this is probably a price worth paying to stay alive.
A paper was
recently published by specialists at Harvard Medical School on the subject of
steroids and regressive autism.
It pretty
much concludes the same as Chez and others have been saying for many years;
corticosteroids can have a profound effect on some types of autism. It remains unlikely that there will ever be
large scale trials, due to the scaremongering about side effects. Much is known about how to minimize the side
effects of steroids, for example tapering and pulse dosing.
Here are
some key points from the paper:-
·
Up
to a third of children with Autism Spectrum Disorder (ASD) manifest regressive
autism (R-ASD).They show normal early development followed by loss of language
and social skills. Absent evidence-based therapies, anecdotal evidence suggests
improvement following use of corticosteroids
·
Twenty
steroid-treated R-ASD (STAR) and 24 not-treated ASD patients (NSA), aged 3 - 5
years, were retrospectively identified from a large database.
·
Star
group subjects’ language ratings were significantly improved and more STAR than
NSA group subjects showed significant language improvement. Most STAR group
children showed significant behavioral improvement after treatment. STAR group
language and behavior improvement was retained one year after treatment. Groups
did not differ in terms of minor EEG abnormalities. Steroid treatment produced
no lasting morbidity
·
Steroid
treatment was associated with a significantly increased FMAER response
magnitude, reduction of FMAER response distortion, and improvement in language
and behavior scores. This was not observed in the non-treated group. These
pilot findings warrant a prospective randomized validation trial of steroid
treatment for R-ASD utilizing FMAER, EEG, and standardized ASD, language and
behavior measures, and a longer follow-up period.
·
Referring
physicians often enquire about the utility of adrenal corticosteroids or
glucocorticoids to treat patients with R-ASD
Prednisone
is already a treatment used in PANS, PANDAS and Landau-kleffner syndrome,
which all have autism-like symptoms.
Corticosteroids for the treatment of Landau-kleffner syndrome and
continuous spike-wave discharge during sleep.
'Wicked'
Slightly off-topic but, the following
is relevant.
There was a recent documentary by the BBC about US-style DAN autism therapies now being sold to
parents in the United Kingdom. The UK
has a government funded institute (NICE) that publishes lengthy advice to
doctors as to what drugs to prescribe for almost all conditions, including
autism. UK doctors will get into trouble if they do not follow NICE guidelines.
Commenting
for the BBC, on the DAN-type treatments, Francesca Happe, a professor of
cognitive neuroscience at King's College London and apparently one of the world's
leading researchers into autism, said practitioners who "peddled"
treatments without proof were "wicked".
But how much
proof do you need? And who is to say
which published researcher is serious and which is a charlatan. The lay autism parent might (falsely) assume
that if a researcher is publishing papers, they must be serious and the
conclusions reliable. The reality is
that some of the papers are indeed flawed and the conclusions are
nonsense. That is why I keep a list of the researchers who I believe in.
At the
extreme are bodies like the UK’s NICE, who conclude that absolutely none of the
hundreds/thousands of drugs/supplements proposed for treating core-autism
should be used.
The short
version of the NICE clinical guidelines is below. The much longer version reviews in detail
many of the papers I have reviewed in this blog, but comes to a very different
conclusion.
I read the same papers as NICE and concluded something
entirely different. I found several
drugs that do indeed work. The
difference is that my standard of proof is lower than that of NICE and professor of
cognitive neuroscience at King's College London.
The
DAN/TACA/MAPS/ARI doctors from the US are also hopefully read all these papers,
but they come up with ideas of the sort that do fall into the “wicked “category
mentioned above.
Autism parents are not
surprising bewildered. It is the
parent that ends up deciding where to draw the line between what treatment is genuine
and what is fantasy, perhaps like this one.
Conclusion
Yet again,
we have a therapy based on solid science that is in use by a very small number
of serious mainstream doctors. It has
not crossed into general use due to a lack of large scale trials.
As a result,
medical science continues to tell families that there are no drug therapies for
core autism, except some anti-psychotics, anti-depressants and anticonvulsants
most of which have serious side-effects and/or cause dependence.
In the case
of prednisone, this is a cheap generic drug that does have side effect with
prolonged use. Severe regressive autism can
also have side-effects, like complete loss of speech and cognitive impairment.
The answer
might be parents signing a waiver to get open access to drugs that have been
used successfully in experimental use for autism, without the doctor worrying
about losing his license, or being blamed for any side effects.