DIY biomedical intervention

[Neveradullday]

My ds (3) has recently been dx as asd. It is considered mild and we have therapy lined up. I have looked into the biomedical intervention and recently started him on a gfcf diet. Problem is we live in a place where we do not have access to the right practitioners to assist us with this. I noticed the gfcf diet seem to be having some kind of effect (he is more with it, less echolalia and less hyperactivity) so I am thinking of doing this properly. He is already on vitamins, omega 3-6, and calcium supplements. I am looking to introduce probiotics and enzymes (unfortunately I am still trying to navigate the whole birthday party/playdate treats). Has anyone started a similar intervention with their toddler on a self starter basis, and if so what worked for you? I don't want to screw this up or give him the wrong supplements. Many many thanks.

[ouryve]

And trials independent of drug companies, along the lines of this sort of thing, have to rely on pretty small pots of funding from the likes of NIHR. Some pretty impressive research proposals have funding turned down, simply because there have been even better ones and resources are extremely limited.

The better proposals, whatever their subject, are based on work that has gone before and look to develop and/or consolidate something that shows promise. When there is no body of good quality evidence behind the work, then the chance of funding is already pretty slim.

[Bilberry]

Doing randomised controlled trials is very expensive especially if there isn't a drug at the end of it which would attract big pharma to do the research. It is also difficult ethically to do research in children or others lacking capacity. However, this would seem to be an ideal candidate to do such research as there is uncertainty about the outcomes (if you are fairly sure which treatment is best it would be unethical to provide an alternative treatment). It would take a good number of years to conduct such a trial and even then there would be arguments about its generalisability.

[VioletBumble]

Okay, that is interesting. So you're saying that there is no definitive proof either way?

It's a shame it has been beyond the wit of scientists to do decent stand-up research on this so far. Autism and anxiety research seems to be a very active field, especially in the USA (if the media is to be believed), so why no conclusions either way?

[Bilberry]

Violet that is a very poor review - more of a narrative. The authors have not systematically searched the literature, stated what their criteria is for including studies or done any sort of quality analysis of their included studies. We have no way of knowing what studies they have ignored or how they have tried to addressed bias. I think all that can be concluded is that more research is needed. Note, I am not saying there is not a link only that there is no robust scientific evidence to assess the benefits and harms of such a diet on ASD

[VioletBumble]

My feeling is that there are a lot of research dots that need to be joined up with regard to allergies, auto-immune disease, gut dysfunction, malnutrition, opiates, developmental delay, psychiatric disorders like anxiety and depression, and sensory dysfunction (that's just in my immediate family lol).

It's obviously not as simple as 'gluten/casein causes autism' but there's a lot worth investigating imo.

I have no axe to grind here, I'd prefer it if no association was proved as it would be near impossible to get DD to give up her beloved diet of Cheerios, pasta, cheese and crackers.

This 2012 review is interesting and certainly doesn't dismiss a connection:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/
"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity: This review focuses on neurologic and psychiatric manifestations implicated with gluten sensitivity, reviews the emergence of gluten sensitivity distinct from celiac disease, and summarizes the potential mechanisms related to this immune reaction. ... Conclusion: Converging and accumulating evidence suggests that the gluten-mediated immune response is frequently associated with neurological and psychiatric manifestations, and GS [gluten sensitivity] represents a unique condition with a potentially different mechanism and different manifestations than celiac disease. More research is needed to help disentangle CD from GS and to understand the mechanisms of gluten-associated neurologic and psychiatric complications. These central nervous system effects of GS and CD are not trivial. Therefore, given the under-diagnosis and potential health consequences, this suggests the value of developing better ways of detecting and preventing the potential complications of these disorders."

[Bilberry]

That is it - there isn't any quality research proving a link (double-blind RCTs also taking into account harms). Of course this doesn't prevent you observing a strong correlation in your child though this would not qualify as a 'trial' just an observational case study with a sample size of 1 with strong confounding factors.

By the way 'E numbers' are not automatically 'bad' eg you would really struggle to survive without E948 and I'd fancy quite a lot of E175 though I wouldn't eat it; your supplements will contain E numbers (though probably given their full name).

[Neveradullday]

Lol very funny. I was just sharing the results of my trial, hardly an aggressive intervention. If people choose to give it a miss based on research disproving any link (bearing in mind there is just as much research proving it), it is a shame, but I respect it. For those who do want to give it a try, I have shared my sources.

[ouryve]

We have a sort of overlap there, then, zzzzz. DS2 also eats cookies (though not chocolate ones as we don't like scraping them off his bedroom floor at midnight)

We can market the cookie and fig roll diet, based on a sample of 3.

[Bilberry]

reams of scientific papers available

There may be reams of papers written but actually there is very very little quality research. Once you start looking only at unbiased research you will find no or very very limited evidence of effectiveness (eg trials with only 10 people in each arm and no recording of harmful effects). For example, if you look at Cochrane reviews for a variety of dietry interventions/supplementation they all say there is no evidence to support any of those interventions or to say they are safe.

'Evidence' such as that for the Ouvyre ham sandwich diet or the Polter marmite diet is (I'm sorry ladies) not worth the paper/screen it is written on. Maybe they do work but there is no scientific evidence to back up this assertion.

[ouryve]

I should market DS2's diet. Ham sandwiches, sausage rolls, fried ovals eggs, cake, hot cross buns, yoghurt and crap & chips.

The progress he's made in the past year has been quite astonishing.

[Jasonandyawegunorts]

Good to know Jason. All the best.

what a strange reply.

[Neveradullday]

Good to know Jason. All the best.

[Jasonandyawegunorts]

despite the reams of scientific papers available

The person who originally started the get biomedical intervention into the main stream, Dr James R. Laidle, has since debunked his own theory and doesn't belive it played a part in his childs progress.

[Neveradullday]

other than his restrictions, my son eats everything, huge variety offruit and veg, different meats, fish, eggs, nuts, etc. he even eats home fermented stuff. The diet does not need to be highly restrictive, but it is not an easy one to implement because of our reliance on processed foods (especially for breakfast). Picky eaters will be picky, regardless of the variety on offer. I agree that there isn't enough awareness in the community, despite the reams of scientific papers available, hence my update. Therapy played a role for sure but the diet was instrumental in the speed of progress. Just putting it out there, and not interested in debating quacks and such likes.

[Baddz]

Ds1 had a very limited diet too.
We found as his anxiety decreased so did his willingness to try "new" food.
His diet is pretty good now (for a 12 year old addicted to pizza! :))

[Baddz]

Zzzzz....we gave ds1 omega 2 fish oil, zinc and magnesium.
We also cut right down on carbs.
The improvement was quite amazing. Prior to this he was on the NHS list for exploratory surgery.
Interestingly a couple of years ago there was a programme on ch4 about treating things with diet (sorry can't remember the name) and there was a boy with asd and they immediately put on fish oil and magnesium. It made me realise what I was doing wasn't "woo" after all! :)
I think you are right...the links between diet and neuro function are well known...the NHS just doesn't hAve the resources/budget/trained staff to implement it.

[VioletBumble]

I've only got experience of eliminating dairy (cow's milk protein) in a baby failing to thrive, but the effects of occasional tries with formula milk were dramatic (projectile vomiting and going floppy/pale in a baby that was normally never sick). CMP allergy was diagnosed by paed.

So we stuck to breastfeeding, however I didn't realise that I should have eliminated dairy from my diet, so although the dramatic symptoms like vomiting stopped, long term chronic symptoms remained in the form of lack of weight gain and possibly some neuro stuff. It wasn't till I stopped BFing and she went on to a dairy free diet that she properly gained weight and looked healthy.

We were advised to reintroduce dairy at around age 2 which we did gradually - no apparent reaction so we carried on with it. However although DD seems physically healthy, she now has pretty bad anxiety (apparent since the age of 2) so I'm really wondering about long-term chronic effects again.

This seems a good article if anyone's interested
www.psychologytoday.com/blog/mental-wealth/201307/food-inflammation-and-autism-is-there-link

[Baddz]

[Baddz]

Hi op.
Have you checked out the GAPS diet book?
I know people who have had great results with that but it's not easy...requires major diet changes.
I have done lots of therapies with my ds1 over the years - all of which have helped him greatly.
We have done;
AIT - auditory integration therapy
RRT - retained reflex therapy
And have also followed the tinsley house programme (basically diet changes, supplements and proprioception exercises)
My ds1 is such a happier, more confident boy now :)
As far as I am concerned I did "cure" his issues (bowel issues, hyper noise sensitivity, dyspraxic traits, asd traits, dyslexia) BUT other people who have DC with these issues take great offence at this.
So I now say he is "no longer symptomatic".
I don't know how else to word it tbh.
He had lots of problems.
We did some therapies.
The problems went away.
NB: I Am not saying these approaches will work for everyone. They won't. But they will work for some. As far as I am concerned it was worth the leap of faith.
Good luck op.

[Jasonandyawegunorts]

Jonathan Tommey and his money making, Tin foil hat wearing, Brainwashing follows have a lot to answer for.

[Neveradullday]

Of course I have been more hands on and have followed closely what the therapists have been doing. The thing is 50% of his issues resolved themselves without even being addressed once in therapy or by myself, which is definitely related to removing sources of discomfort (the same as you would remove E numbers from adhd kids). Diet can have a dramatic impact on behaviour, sensory and speech, more than people realise.