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Tuesday 29 July 2014

Steroids for Regressive Autism

As we have seen at various points in this blog, there is mounting evidence to support the use of steroids in autism, particularly in regressive autism.


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.


  
'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.




14 comments:

  1. Hi Peter, My son has an eye infection and was prescribed a kind of corticosteroid with the brand name Dispersadrom-C eye drops.
    It consists of Cloramphenicol and Dexamethasone and can be used for 7 days.
    Would it be ok with Bumetanide?

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    1. Petra, you would need to check that with a doctor/pharmacist. We have used steroids at the same time as bumetanide with no problems.

      Delete
  2. Thank you Peter for your reply.
    Doctor says Dispersadrom is ok with Bumetanide, but having asked your opinion feels even safer to use.

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  3. This is the latest study out there which is the first Radnomized Double Blind Placebo-Controlled Trial for prednisolone, very interesting:

    Effect of prednisolone on language function in children with autistic spectrum disorder: a randomized clinical trial

    https://www.sciencedirect.com/science/article/pii/S0021755719304656

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  4. The above trial was recently reviewed by the folks at Harvard.

    A rational pharmacologic approach toward a biologically meaningful subtype of autism spectrum disorder

    https://www.sciencedirect.com/science/article/pii/S0021755720301467#bib0085

    Peter have you had a look at the works of Dr. Gerry Stefanatos. I think he also deserves to be on the Deans list.

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    1. Adam, Prednisolone/Prednisone is very potent and we keep it at home for possible severe asthma attacks, but I have used it twice for autism (only once ever for asthma).

      Many people have found this drug, or the similar steroid Dexamethasone, to provide a benefit in autism. This benefit normally comes at the cost of not insignificant side effects.

      I will take look at Dr Gerry Stefanatos.

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    2. Before opting for the almost impossible task of asking the doctor to prescribe prednisolone under supervision, what do you think can be a safer alternative to see if it's the same sub-type of autism that will be respond to prednisolone ?

      Do you think there can be some other therapy that is safer than prednisone to which the patient can respond to ?

      Thanks

      Delete
    3. Adam, you can safely take a steroid like prednisolone for 5 days, without long lasting side effects. Sometimes a shot course of steroids does provide a long lasting effect in autism, so you might be lucky.

      There are many immunomodulatory therapies proposed for autism, with a range of mechanisms. Steroids, Suramin, Statins and that is just the ones beginning with "S".

      I think most people with autism will find a beneficial anti-inflammatory therapy, but it will take trial and error to find it.

      Delete
    4. speaking of statins, is there an mg/kg dosage ?

      What do you think can be a safe mg/kg/day dosage for an off label trial for someone who is 20kg ?

      Is it once a day or twice a day ?

      Also it would be helpful if you can update Monty's weight on the polypill page.

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    5. Statins are not usually prescribed in people under 10 years old, because cholesterol is not an issue. The logical dose of Atorvastatin in someone with 20kg would be 5mg, or perhaps better just half a 5mg tablet, and just once a day. The effect, if present, is from the first pill. If 5mg has a benefit, then try 2.5mg and see if it gives the same effect. Always use the lowest possible dose.

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    6. Thank you for the information Peter, appreciate it.

      Speaking of statins, I read a few papers that statins can also lower the chances of epilepsy.

      I just bough Michael Chez's book (the online kindle version) I think his findings on regressive autism are more relevant to my sons regressive history then Dr. Kelley's theory of Mitochondria.

      I think you should also update the regressive autism tab on your blog and include excerpts from his book, that would be very informative for the readers.

      I am definitely going for a sleep EEG for my son next week, if the EEG is abnormal I think the first line of therapy has to be Valproic Acid like Chez says.

      reading from his book my son might also be a good contender for a steroid.

      Dr. Chez's paper and my sons post infectious regression and a maternal autoimmunity history (severe eczema in the family) is pointing towards an autoimmune subtype of autism. He also had eczema earlier when he was a year old on his elbow which was treated with topical prednisolone.

      What was your experience with prednisolone when you used it twice for autism ?

      I did discuss with you on the PEA blog post that my son had low neutrophils and high lymphocytes l. I gave my son PEA for a week (it gave him an eczema kind of rash on the chest so I had to stop it, also I would take Italian docs like antonucci with a pinch of salt) also he started sleeping very late in the night and quit sleeping in the afternoon which is a much needed break for his mother. I couldn't find much info on the internet on the low NLR phenomenon except some papers on autoimmune lymphoproliferative disorders and infectious mononucleosis (which is also being recognized as autoimmunity), but I did find that prednisolone dosage increases WBC count by increasing neutrophils and lowering lymphocytes (means it increases the NLR)

      Thanks again for this blog, I always ask parents who are trying alternate therapies to visit your blog. I think they are being taken advantage of by the alternate practitioners.

      Delete
  5. I am a 43 year old male with Asperger's and many comorbidities both psychiatric and physical alot related to gut permeability SIBO candida etc...at present I'm taking 50mg of Prednisone for a sacral ilial radiculopathy with severe pain sciatica and neuropathy..I'm well aware that Prednisone could aggravate the microbiome among other things but is it only useful in regressive autism?Is leaky gut a type of autoimmunity that isn't classic?cheers

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  6. Avi, leaky gut and autoimmunity are seen as being closely related.

    Some people think the leaky gut comes first and then auto immune problems follow. Here is a good review:

    Partners in Leaky Gut Syndrome: Intestinal Dysbiosis and Autoimmunity
    https://www.frontiersin.org/articles/10.3389/fimmu.2021.673708/full

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  7. Many thanks Peter...I guess for me the 46 seemingly diffuse and unrelated ailments all stem from this dysbiosis and autointoxication by bacterial and fungal toxins leaking through the porous epithelium and literally poisoning the entire body and brain...doesn't take a rocket scientist to extrapolate how the entire organism would eventually break down manifesting every known disease with autoimmunity being the closest link but not the only..thanks once again

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