In this blog I make a point of not
promoting non-generic products, except when they have some special
features. This was the case with
sustained release NAC, which does seem to be a much better product than the gelatin
capsules.
In the case of broccoli powder and Sulforaphane,
there was some testing done that showed most products sold in the US do not
actually produce any Sulforaphane. Small doses of broccoli powder do indeed seem
to have a positive effect in some people’s autism and even on insulin
sensitivity in people with diabetes. We assume this is down to
sulforaphane, but even that is not certain, there are other interesting
substances in broccoli
In the Johns Hopkins research on
sulforaphane they use a deep frozen product made in the lab that is not
commercially available. The research was
initially in cancer, but does now extend to autism.
We saw in earlier posts that that some
broccoli powders have retained the necessary enzymes needed to produce Sulforaphane in your body. You can always add back the enzyme that got
destroyed in processing, using Daikon radish, which is similar to what happens
in Johns Hopkins lab process.
One producer,
whose product I have not used, has come out with a new product that will be
interesting to people whose child does not swallow pills and hates the taste of
broccoli.
The producer keeps
writing to me to tell me that their product produces the most sulforaphane. What would be nice would be independent
testing of several products currently on the market.
· “Delicious tasting, all natural blend of three
of Nature’s most highly-prized plant foods; Pomegranate Juice, Coconut Water
and 100% Whole Nutraceutical Grade Broccoli Sprouts”
Their broccoli powder is called
EnduraCell and the more child friendly drink is called PomGenex.
You can buy their products in
Australia and from their US distributor.
Anyone trying it is very welcome to
leave their feedback here.
Hello Peter,
ReplyDeleteIn fact I had been wanting to try broccoli sprouts for a long time but do want to know if it could be useful given my son's discomfort on being administered NAC. He does display the fever effect.
Also, I am feeling that most dramatic responses to pharmacological interventions are given by those who have accompanying health issues like seizures, allergies or digestive problems or even extreme sensitivities. My son's autism is primarily caused by a malfunctioning brain, structurally or functionally. Probably that is why I am observing improvements, with and without everything and anything.
But I do have to remember the fantastic overcoming of imitation deficit on starting baryata carb, a growth enhancer and Nat sulf, a homeopathic med for detoxification. Not all homeopathic remedies worked so I do not think it was a placebo effect as one of the most potent remedy for ADHD resulted in an even more agitated child..we tried it for six months.
Do you think I will have to be satisfied with marginal effects, here and there, or is there a possibility there really might be a drug that will give me something to really celebrate about.
Or should I adopt the non aggressive route of detoxification and optimum digestion using nutraceuticals or homeopathy. Or even try auyrvedic products like the calming shatavari. I have ordered kutki..
I gave my son the lowest dose of bioamicus probiotic drops and will increase it tomorrow. Let's see.
I just wish I also get to experience something dramatic with the first dose itself of at least one drug/supplement.
Kritika, my suggestion is to use what helps. There are some people for whom nothing works, but most do seem to find something. Since there are hundreds of possible dysfunctions there is no easy way to do this.
DeleteIdeally you would find some people with a similar sub-type to your son and then try what worked or them. For example, Agnieszka's son responds in a very similar, but not identical, way to my son. I would say it is 80% the same autism.
So based on comorbidities, family history etc, you would find someone with a similar type of autism and see what worked for them. This is why a book of detailed case histories would be useful.
Peter,
DeleteYes, I suppose I should use what helps but I can't really decide what helps. I went through a record of some positive responses to bumetanide which Angeiszka so generously shared with me. Some of the improvements she noticed in M have been shown by my son, off and on..greeting parents, initiating play. Actually learning wise my son has not stalled and it's a steady though probably slow progress in the sense it's not at a neurotypical rate. It's the 'autism' that is the problem..the severe deficit in communication and social behaviour. This variable is subject to so much fluctuation..seasonal cycle, lunar cycle..all seem to be affecting him which makes deciding upon a baseline against which to assess what is useful, pretty tough. For instance i was convinced bumetanide having some sort of positive impact on his perseverance levels but then he acting so irritable and demanding, again showing erectile discomfort when faced with task performance that it was like we were back to square one. Reason..could it the extremely poor air quality, hazardous levels which has led to temporary closure of schools in Delhi and government adopting emergency measures. How can I be sure?
This was the initial apprehension about starting drug based therapy on my son..how to evaluate effects in ever shifting autistic traits. Inexact science of homeopathy for inexact autism? Actually my queries also end up being pathetically inexact!
Ending the rhetoric here. Please suggest if sulphorapane, broccoli sprouts, might help my son who shows clear fever effect , when NAC seemed to cause some discomfort.
And do write a post on zinc.
Regards
Kritika, I would again point out Knut's work and Peter's post covering it. The idea is to catch them young and stop the autism from progressing. Maybe, even reverse it. Without the right interventions, most autism does get worse. It is not only the progression of the condition itself but also additional damage that the body is unable to cope with. When my daughter was your son's age, she had no allergies, no sib, energetic. Puberty hit hard and the presentation changed dramatically. Her autism became more severe.
DeleteRegarding interventions, you have to try different ones to see what works. We have had a few successful ones, but have had so many flops. For years. Some of them seemed to have some marginal benefit, but nothing as clear as the drugs which seem to work the best for us. As far as I can see, the only drug you have tried is bumetanide, so there's plenty more out there.
RG,
DeleteFive more tabs to go before I complete a month on bumetanide. Schools have been closed here more or less ..first for the Diwali and then pollution scare. Let me get a feedback on how he is doing at school..any perceptible change.
. and get his electrolyte levels re evaluated to see what is going on.
Usually my intuition works real well and I felt somehow bumetanide is 'the' drug for my son's autism. But I do not feel it did any ground shifting except for some physical activities which he seems to perform more doggedly. He also was doing some writing work at his therapy center a little better but with everything closed I have lost a tab on his performance.
Some odd behaviors have cropped up but at my son's therapy center lot of parents were coming with that complaint.. unstable weather conditions maybe. Or he could be going hypokalemic..or not enjoying the high potassium levels he had when we started out.
It gets quite complicated but I am aware that we can't afford to call it quits.
Please do not mind if you find me pestering you with queries coming in all kinds of shapes and sizes and intellectual quotients.
Warmly
PS RG, thanks to your guidance at least the erectile pain he suffered on getting morning and evening erections is almost gone now. Tight foreskin..it was as simple as that and a corticosteroid cream took care. Thank you.
Kritika, there has been a lot of discussion around the world regarding pollution and its effects kn the brain. It is significant. However, there is another thing which is more significant in the face of autism - lead. There is a study which I mention all the time because I think it is groundbreaking - the Manish Arora baby teeth twin autism study. It showed that autistic children have a distribution/uptake problem with lead. Which means that all those people chelating their kids through ACC or IV methods may be on to something. Actually, I have also anecdotal reason to believe that they are on to something because I know an amazing DAN doctor who uses chelation very often and consistently gets good results with his kids. This therapy is probably THE most controversial in the wild world of autism. But this study I mentioned shows that there IS an issue with lead in autism and who knows maybe other metals too. The problem for the medical world is that its NOT lead poisoning - it is neither detectable in blood levels nor is it due to a source of lead which needs to be removed. Its rather that the body wrongly takes the ‘normal’ environmental lead and builds organs and bone with it instead of excreting it. It is probably so that these bodies really do need some way of chelating it. I really do not know enough about the topic, but when you say ‘pollution’ and ‘autism’ this is what comes to mind.
DeleteBased on one of your posts, I order SuperSprout which are broccoli sprouts from Australia. I order then in pill form. Do you believe they offer great efficacy or another product that has been trialed. We take 2 day around lunch --we should prob take it twice/day but that is not pragmatic for us. Is taking more at a time a higher odds of getting some of the actual sulforaphane -- another words, should we trial 3?
ReplyDeleteIn our case there is an obvious effect after taking 2.5ml of Supersprouts. This is not an expensive sprout product, so we continue to use it. In some people they also see the mood improving effect, and diabetic people see they need less insulin. So it definitely has an effect in some people.
DeleteYou might as well trial 3 and see the effect.
I have not tried other broccoli products.
Kritika,
ReplyDeleteLike your son, my son is a non-responder to most every intervention we have tried (diets, pharmaceuticals, supplements). I feel your pain. It is frustrating when you hear about something working for a group of kids that does nothing or worse yet exacerbates your child's issues. My son is 12, so I have been at this longer than you and perhaps that is why as time moves on (for me it was when he turned 10) my feeling of desperation to fix this subsided a bit. That doesn't mean that I don't continue to find ways to take the edge off his most difficult issues (anxiety, communicating, easing out of his safety zone of familiar movies/shows). I will never stop trying to help him feel at ease in his body and with the world around him. It is heartbreaking, frighting and emotionally draining -- I really do understand what you are going through.
With all of that said, I think that Peter's approach is correct:
1. Find a baseline for your son. Use ONLY supplements/drugs that really show some positive effect for about two weeks (in order to get anything else you are trying out of his system).
2. Try new interventions at low doses 1 at a time and give each one when your child is healthy.
3. No matter how much you want the intervention to work, try not to read into it's effects, evaluating each one without emotion.
4. Give your son's body time to adjust. New interventions can cause a person to feel a little bit off while adjusting. Most things even out after a few days if they aren't truly problematic.
**Remember that we have only scratched the surface of autism treatments/interventions. It is a long/slow process of trial and error. As the saying goes "this is a marathon, not a sprint".
Last thing I can say is to focus on the symptoms that cause YOU the most stress. I say that because if you can take the edge off of how emotionally charged you feel, it will free you up to support your son. I speak from experience. My son's incessant/desperate/scared repeating of his schedule or shouting out over and over "I have the iPad!" was causing me to feel as if I was in fight or flight. No matter how I tried to support him or talk him through it, noting helped. It feels like an assault on your nerves to have your child yelling at you because they feel so desperate and you aren't able to help them. I have put everything else to the side and just try to focus on that one issue. It really helps.
Best of luck and know that you are not alone :-)
Christine
Dear Christine,
DeleteI have taken to heart your advice on focussing on the most disturbing or disruptive aspect of my son's autism, tackling issues one at a time.
Cristine, two blogs by autism parents are my essentials, the histories and the age of the child in question are uncannily similar but the course of development they have followed are completely divergent. Depending on my mood or rather my son's moody sense of camaraderie shifts towards one of the blog writers. See, this is what autism means to us.
Christine, my son at 4.10 is that age when you start getting anxious about missing the bus..six years everybody says is the age by which your own control over your child's developmental future starts loosening and destiny takes over. I do not entirely believe it of course..but the idea of pushing your child onto the red carpetted trajectory of neurtypical development is too tempting.
Improvements like cessation of SIB, diminishing of sensitivities regarding hair cuts, spontaneous inititation and demonstration of affection, reciprocal smile, mitigation of allergies or seizures activities are parameters, changes wherein being more easily quantifiable. My son is not even stuck up and if you persuade him is willing to atleast try almost every new experience. Peter noticed somewhere that following statin dosing I think, Monty stood up on a stool to give him a spontaneous hug. My son very often chases us with small stools to get to our height to give us hug. You see, he knows what he wants and acts upon it.
Narrowing down the areas where I think any improvement will have effects on a wider spectrum of deficits I feel right now an ability to stay on task and sustain his focus is our biggest issue here. If we can beat this, it will make a huge difference to his 'autism'.
Christine,
Thanks for going through my ramblings so patiently. I will keep on trying to find what works..probably my son will actually benefit from the incremental effects, here and there.
Also thinking of trialling broccoli..no harm I guess. Yes, one intervention at a time.
Warm regards and wishes
Kritika – I really ask you to back you own instincts and abilities, and continue to ignore advice that after age six “destiny” takes over. The world is full of people who were told there is no hope for their situation, who have gone on to live independent, self-determined lives. We have one example on these pages alone, in Roger Kulp, whose health recovery only started in very late adulthood. (However I also recognise that probably by puberty, it would be ideal if your son has obtained a homeostasis that permits an undamaging passage through adolescence. Ideal only, though: not essential.)
DeleteI know it is hard not to feel desperate, as the days pass and your son does not seem to be improving much, even with therapies that work. Our son is 7 and in many respects is far behind even some of the kids in the class at his special needs school. But I also know – KNOW – that scientific and medical research will help him immeasurably in the years, in fact in the months ahead. (Soooo can’t wait till those portable neuromodulation stimulator devices become available in 2017!) And I know from experience that this same body of research also helps us autism parents with our own struggles.
You are obviously a great mother who is doing a great job, and you love your son very much. Everything WILL get better. It is just a matter of when. Alexandria
Alexandria,
DeleteAlthough I am aware that this blog disapproves of any PEE..public expression of emotion, I just love you. Peter, please let it go through. Yours was a great message of hope and strength and got to me just when I seemed to need it the most.
My son, although continuously improving, seems to be doing so more at his own natural pace, which means quite slow as compared to neurotypicals, and I was looking for ways we could just accelerate the process. If I could just find a pathology or even very disturbing behaviour like SIB, it could have been an entry point for me. But he is such a robust healthy child. And because he is slowly but steadily inching forward, with periods of cognitive spurts and then a little less activity happening out there that as yet I have not found an nutritional or pharmaceutical intervention that exceeds that baseline rate. And then I start worrying if i am investing too much time in looking for quick fixes when there may not be any, at least in my son's case, and should rather utilise that time in just working with my child.
But everything will get better. If not in ten years than twenty years or thirty years, we will have solved the mystery of the human brain..and developed treatments.
I just hope and pray that Peters polypill becomes more and more efficient at treating not only one but all kinds of autism and may Tyler get a patent for whatever hi-tech stuff he is working on and make it available to us in a year or two, probably at a discount.
One doctor I know got her son from nonverbal to verbal at age 24 with diet. Some of the suramin study subjects were in their teens. The ‘window’ doesnt close.
DeleteMy son has tried Enduracell (not the Pom version -- the regular one) and I can tell you it smells potent and doesn't taste good. My son is such a trooper however and he will take it mixed with yogurt. I suggest giving it while your child is engaged in a favorite activity like watching a show/movie if they struggle with the taste.
ReplyDeleteOne thing to note from their website listed under the heading:
Are there any contraindications?
Because Sulforaphane acts by sending signals to the ‘switches’ within the cells, taking large doses of antioxidant vitamins will mask the signal so that the sulforaphane won’t have any effect.
Because there are theories that suggest that large doses of antioxidants will help treat ASD, some people take supplemental doses of so-called ‘antioxidant’ supplements.
Supplements to avoid are:
Vitamin C
Vitamin E
Vitamin A
N-acetyl cysteine (NAC)
‘Antioxidant’ formulations
--Christine
I am currently giving my son ,4.5years old, mitospectra(mitochondrial dysfunction supplements which contains large quantities of antioxidants) and broccoli powder(the one from Australia). So you are saying this may be contra indicated? Did you have any experience you could share regarding this? Do you still give enduracell? Oh by the way, have you tried peanut butter? It maskes the smell and the taste tolerable. I give it with slice of apple. Thanks .
DeleteK.
Since memantine and channelopathies have been discussed quite a bit here on this blog as well as in the comments, this new Alzheimer's research should be very interesting as it potentially relates to autism:
ReplyDeletehttps://www.sciencedaily.com/releases/2016/11/161109111922.htm
The general gist here is that the researchers are likening Alzheimer's to being "diabetes of the brain" which is not a new assertion. What is new is that they found that memantine has a novel mechanism in the brain in enhancing insulin signaling, via blocking a potassium channel which allows more calcium to enter the cell, which in effect increases learning/memory.
Now this is where specific genetic dysfunctions in autism may matter a lot with regards to this new research and might explain why memantine can have such a polarizing effect on the autistic population. If you have learning problems because of insulin signaling problems (Peter has already posted extensively about intranasal insulin therapy being a novel potential therapy for some forms of autism), then memantine might help, provided its strong NMDA antagonism properties don't have the wrong kind of side effects. On the other hand, if excess calcium inflow happens to be a problem, then memantine might be like adding fuel to the brain fire even though it is thought that antagonizing NMDA receptors should generally reduce the hyperactive and neurotoxic firing of neurons thought to be a hallmark of autism by many but certainly not all researchers.
The actual paper is linked at the bottom of the press release.
Thanks Tyler.
DeleteIf that is true and if there are no additional layers of complexity there (as if!) then the simple conclusion would be that a negative reaction to memantine in child or adult with autism would indicate that they could benefit from straightforward ccb's. OR that they need both on board.
Here is a paper discussing a new finding concerning how the immune system strikes a balance between inhibiting immune cells that are erroneously programmed to produce damaging autoantibodies (which has been discussed as per Dr. Frye's FRAA research), and allowing those cells to do other things in times of infection as outright killing them might leave the body low on immune cells (which are metabolically expensive to maintain):
ReplyDeletehttps://www.sciencedaily.com/releases/2016/11/161110085931.htm
Two radical therapies to "reboot" the immune system have been discovered recently. One is for multiple sclerosis where first the patient has their entire immune system obliterated with chemotherapy drugs, then their immune system is rebooted with the injection of previously harvested immune stem cells that have not been programmed yet by the body to cause MS via autoimmunity. The other method involves fasting 4-5 days straight (no food, just water) which causes the body to break down the immune cells in the body for energy, leaving the body with few immune cells until the fast is broken where in effect the stem cells from the bone marrow produce a whole new immune system. These are the two methods I know of for clearing out the existing immune system and replacing with with a new one though there may be several other methods.
This thought got me to thinking about one time my son got a fever and was sick for a day and then strangely would not eat much if anything for several weeks no matter how much I and my wife encouraged him. He was already chubby at the time so he managed to slim down during that time before his appetite came back which his pediatrician ironically thought was great even though I told her that I don't think my son going on a hunger strike to lose weight was "GREAT". Nevertheless, during this time and shortly thereafter he had some noticeable behavioral improvements which I could not really make sense of other than to attribute it to some of the reported benefits of ketosis (this was also several years ago and I know a lot more about this stuff now then I did then).
ReplyDeleteIntentionally fasting children for 5 days even for "medical purposes" will get you thrown in jail here in the United States, so that is not practical to do and probably a very bad idea on a child that does not have a weight problem. Nevertheless, I would really like to see some autism researchers instead take a bunch of mice genetically engineered to display the various forms of known syndromic autism (Fragile X, etc.) as well mice with autism symptoms via the known ways to induce idiopathic autism symptoms in mice (valproate during pregnancy for example), and then see what happens if they are fasted for 3 days (which the length of time for the original fasting research on mice, though in humans it takes 4-5 days for this immune effect to kick in). Perhaps the research group pushing this fasting research would be interested in taking a slight side turn with respect to autism if some autism funding group like Autism Speaks or the Simons Foundation would support them. Or maybe we could do a kickstarter campaign or something like that.
This research would not take too long to do (6 months to a year perhaps) and might yield big scientific benefits with respect to autism. It would also at least give us maybe a better idea of how much the immune system is involved directly in causing autism for the various mouse models and also give researchers a better idea of where they should maybe be focusing their research and resources on.
The maternal autoantibody hypothesis has been around a long time, but maybe there is more to it than just that. I know that antibiotic regimens have been popular "alternative" therapies for autism for a very long time now, though while antibiotics will wipe out microbes, they won't reboot the immune system which may be running afoul in concert with the microbes in the body that work in tandem for optimal health.
Just something to consider here. Has anyone else seen any ironic improvements when their non-verbal child went on a temporary hunger strike?
Tyler,
DeleteMy son loves food..and will at least make an attempt to get down his throat the temptations on other people's plate. Edible equates to consumption.
But, I remember on occasions when he had greatly reduced appetite, he was calmer but those periods were associated with sickness so difficult to ascertain if it was the fasting or the fever or the fatigue.
Although my husband is Muslim, we do not follow any formal religion but Muslim kids with autism who are stable enough to keep rozas might be a source of data on this. I don't know if Jewish kids also fast.
Tyler, it's all very interesting. Can you share where I can read more on fasting and immune system "reboot"?
DeleteThere are some reports on intractable epilepsy improvement following viral infection. This is what they concluded:
"Some cases of childhood epilepsy have immunological abnormalities, and immune therapy may be effective to control epileptic seizures. The changes in the immune mechanism following acute viral infection may lead to improvement of childhood intractable epilepsy as in immunoglobulin therapy.
Alternative hypotheses include the following: (1) the phenomenon is a simple coincidence; (2) some viruses directly suppress seizures in the brain; (3) the increase of AEDs levels due to dehydration following viral infections suppress the seizures; (4) some viruses induce the elevation of serum transaminase, and, as a result, the levels of AEDs increase; (5) an elevation of the serum cortisol level following the severe infection suppresses the seizures; (6) the ketogenic effect of fasting during the viral infection induces a seizure free state; (7) the viral infection induced suppression of immunopathological processes by anti-inflammatory cytokines, such as interleukin-10 and transforming growth factor-β."
https://www.ncbi.nlm.nih.gov/pubmed/20144516
https://www.ncbi.nlm.nih.gov/pubmed/24479997
With regard to (7): antiinflammatory cytokine IL-10 expression was consistently decreased in children with autism in some studies.
If the result in autism or epilepsy is spectacular, then I would suspect several mechanisms coincidence. Ketosis might not be the most important, but there is an easy thing to do at home: check urine ketones in a child who improves during fasting or fever.
I could not find the paper in my history or bookmarks so I looked it up. There would actually be two papers, which I am sure you can get from these press releases
Deletehttp://news.usc.edu/103972/fasting-like-diet-turns-the-immune-system-against-cancer/
https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
The first paper came out on mice and was provocative enough that it was widely reported in pop-sci media.
The second paper was a followup paper where they tested this diet with some modifications to make it more practical on human beings as totally starving people with cancer is a tough sell to cancer patients.
Thanks, this is really interesting and worth following even though I do not even think about such intervention in my son as much shorter fasting triggers migraine in him.
DeleteI found some more from the same team:
“Strict fasting is hard for people to stick to, and it can also be dangerous, so we developed a complex diet that triggers the same effects in the body,”
https://news.usc.edu/82959/diet-that-mimics-fasting-appears-to-slow-aging/
Off topic, but with regard to stem cell, this caught my attention today:
https://spectrumnews.org/news/stem-cell-transplant-makes-rats-social/
The study is interesting, but the last sentence is: "...for safety reasons, nobody is going to be treating children with these cells for some time.". Apart from obvious things, like that humans are not rats etc, such conlusion makes me wonder: what was that study done for then?
Somewhere in this blog I highlighted a study from Newcastle University where they use a starvation diet to reverse type 2 diabetes. It really can work, at least for some of the really committed people who have tried it.
Deletehttp://www.ncl.ac.uk/magres/research/diabetes/reversal.htm
Starving a child would be unwise, but so is allowing obesity, which is now common in developed countries.
Here is some new research suggesting why cannabis might be really bad for autism:
ReplyDeletehttp://www.upi.com/Health_News/2016/11/10/Cannabis-causes-memory-loss-by-decreasing-neuron-energy-Study/7211478789921/
Mitochondrial stress and dysfunction are one of the most common findings in those with autism, and exogenous cannabinoids in effect seem to poison brain cell mitochondria (at least in the hippocampus), thereby leading to decreased function and higher rates of brain cell death.
I remember several long periods of my son's "self-repairing" while fasting intuitively. During these starving periods it was obvious that he was challenged with developmental issues and his food denial somehow helped him keep on functioning quite well.
ReplyDeleteThese days, as an adult, he talks a lot about the benefits of fasting on his mental well being and I see him postpone his meal for many hours.
When fever in some autism there is a big improvement and fever is accompanied with starvation, thus we could suspect that the fever effect might actually be the fasting effect.
Autophagy. 2010 Aug 16; 6(6): 702–710.
ReplyDeletePublished online 2010 Aug 14. doi: 10.4161/auto.6.6.12376
If autophagy dysfunctions make an individual's autism worse, then 24-48 hours of starvation might help.
Peter, for $54 you get a 30 day supply which is obviously not the most expensive autism intervention, but almost 2 dollars a day for a 10g scoop (each tub has 3000g of product in it). So the question is (based on your research on these matters in the past) could you get by on a much lower dose and achieve the same results, just as you recommended with the super sprouts which I bought and found quite expensive if you follow the recommended dose for that product (you recommended a dose I think that was 5 times less than the standard dose). I am thinking about trying the EnduraCell product but the price seems a bit high and was wondering what your advice might be on dosage. On a side note, the super sprouts product (shipped all the way from Australia) I trialed and did not notice anything miraculous but because I could only mask its taste in Mac and Cheese (a food I typically do not give my kid more than once or twice a week) I likely did not give it to him regularly enough to notice any consistent effect.
ReplyDeleteIf this product is as potent as the producer says it is, you may well need less than 10g. In my son I use 2.5ml of the other product and more would make it switch from enhanced mood to totally hyper. Why not buy one tub and experiment. See if the taste is ok and try different doses.
DeleteI guess you are right. This is bleeding edge territory and there really are no guidelines for dosage, especially since almost all of the research has been done on mice, rather than a more comparable animal to humans like a pig or a primate. Just hope it tastes as good as they claim.
DeleteMy son, without knowing the discussion here, started fasting, no food, no water, no medication for 24 hours and may continue.
ReplyDeleteAfter 24 hours he just drank a little water and ice tea.
I know this is tightroping, but if I try to make him change his mind, I may do the opposite, so I keep neutral.
More epigenetic stuff the next generation of parents will hopefully take to heart:
ReplyDeletehttps://www.sciencedaily.com/releases/2016/11/161114140611.htm
In effect, binge drinking during adolescence has direct epigenetic effects on future offspring (I highly doubt they are good effects as randomly flipping off and on genes can function in the same way as adding random mutations to the genome). This research probably has no direct link to autism, but I suspect followup studies may find an intergenerational IQ dampening effect through these mechanisms.
Hello Peter, long time reader, first time posting.
ReplyDeleteMy Name is Daniel and I live in the US. I have a son who has just turned 3 in September with ASD. I believe he had his first autism "hit" eitherbefore birth or shortly after, with his second more substantial "hit" came around 15 to 17 months of which he regressed and lost all language. He has displayed the "Fever effect" before, so would it be safe to assume broccoli sprout powder, or Pomgennex is worth a trial? He does take NAC, should I discontinue this while I try? Also what are your thoughts on the product Nrf2 Activator™ if you don't mind taking a look at it.
https://www.xymogen.com/assets/imageDisplay.ashx?productID=140&attachmentTypeID=5
Also if I start using either of the two products what is the recommended dosage for a 33lb (15KG) child age 3?
If anyone has any experience they want to share please do.
David, the Nrf2 Activator is turmeric + broccoli powder. You might well try one, there is no independent testing of these products, so you cannot tell which is best. I use 2.5ml a day of the broccoli powder I have. I use NAC and the broccoli powder. Another potentially very helpful intervention that is made for very young children is Biogaia Protectis (drops or tablets) it seems to help 50+% of people with autism. The effect is within a day. I think this has more effect than the broccoli powder.
DeleteDaniel here again,
DeleteWe have just received a bottle of BioAmicus Reuteri drops. Would this be more or less the same? I realize there are different strains of L. Reuteri and I realize now that BioAmicus doesn't even list what strain they use. I may order the biogaia protectus and shelf the BioAmicus to be sure then, or do you think it doesn't matter?
Daniel, the BioAmicus does seem to help, so give it a try. It may be slightly different to Biogaia Protectis.
DeleteIf I remember right, bioamicus has specified the strain they are using, if not on the actual bottle, then on one side of cover or box..I can't find the right word, where all the information is given.
DeleteI would have told you but do not have it with me right now as I am out of home.
Oxidative stress, I agree. So few people see it as fundamental to disease. In the case of ASD, I see a lot of it coming from slow SUOX, XDH, and AOX1 genetics and lack of molybdenum, either the mineral itself or molybdopterin.
ReplyDeleteWhen these genes are slow there will be a build up in O2 in the mitochondria. Any electron that hist the O2 will turn them into superoxides. Note that all those genes have to do with environmental detoxification.
I have aspergers and Molybdemun changed my life. And in all the genes I have for autistic children I see rare gene SNPs in those genes.
Peter,
ReplyDeleteDaniel Here, When giving Biogaia to our 3 year old, do you just follow the directions on the package of 5 drops once a day? Should I give more/less? Also should any other probiotics be giving as well that day or should I discontinue other probiotics while trialing this?
I would follow those directions and see if there is a useful response. If there is an effect it should be seen within a day or two. It is best to trial one thing at a time. Too much probiotic also has effects. If five drops does the job, just use that.
DeleteHello Peter I give my son the regular Enduracell Broccoli sprout powder. It tastes very broccoli intense but my son likes it! I had been giving to him since 2014 when the research came out about the benefits. We had only seen benefits in good healthy digestion. BUT NOW he has been taking 1mg of bumetanide 2 times a day for 50 days and now all of a sudden the Broccoli seems to be giving some serious benefits. I know this because I had stopped using when I started the bumetanide and just restarted it 20 days ago. It seems like there is a very big synergy with Sulforaphane and Bumetanide. The gains are less OCD, more social and more talkative and from ZERO share & show to pretty good spontaneous share & show!
ReplyDeleteAlso I wanted to mention that on the 26th ( a few days from now) the clinical trial right-up of Suramin for autism will be published and I have heard that the news is good. The doctor running the study Dr Naviaux believes that the cell danger response is STUCK in autism and that this can unstick this response for a time. I don't know if a few rounds of this treatment stays in place or if they will need to replace this compound with a safer compound that in-sticks the cell danger response. What are your thoughts. Thank you for all your info I may re-try NAC again for my son too , but before bumetanide it would make him have a stimming neurological reaction. Maybe like Sulforaphane, he might now have a different reaction. Also which broccoli sprout powder do you use for Monty?
Pierrette, I use the other Australian product call Supersprouts.
DeleteI am glad you have a good response to bumetanide. it makes sense that other interventions will now work better.
Suramin is interesting and I have prepared a post on it, but I was waiting to see the study results. I also heard the study was positive. Suramin has to be injected, but it stays in the body a long time. I think it may need to be injected a few times a year, but the trial gave just a single dose. Suramin is a strong drug and the only issues are side effects and that it has to be injected. It is an anti-parasitic drug and is actually less toxic in those without parasites. It is not expensive, but outside of Africa is hard to get.
Peter we have used Supersprout also. & just to comment on the manufacturer Enduracell stating that their product was more potent, I can only say we saw more digestion inducing benefits from Enduracell. I will say that it is very potent. We stick with the original non flavored because I don't want to vary from that potency even tough the taste is intense.
ReplyDeleteOn the subject of Suramin. I remember that Dr Naviaux was treating Samarians that had autism when he first started. I wonder if a family in that community used Suramin for parasites thinking that the autism was caused by parasites. Like what has happened with Ivermectin. It makes you wonder if the whole cascade of biological differences and Cell Danger response are caused by a unidentified virus or unidentified microbial parasite
I tried to write Somalians
DeleteMany medical discoveries are made by accident. If Naviaux initially used Suramin to treat autistic Somali kids who had parasites, that would be a classic example.
DeleteHi all, I just received the PomGenex powder. However, i am unsure of how many scoops to give my 2 year old. Thanks in advance for any feedback.
ReplyDeleteMy 3-year old (started at 2 years) is having one teaspoon = 5 ml each morning. This is enough to give her extra energy but not waking up at night. I would use more if it wasn't for the insomnia issues, so you could trial what dose works for your child.
ReplyDelete/Ling
Peter,
ReplyDeleteI noticed a lot of your posts about Sulforaphane are a little bit older. In the last couple of years, the popularity of broccoli sprouts has grown due to health gurus like Dr. Rhonda Patrick. She is very smart and credible. She has very detailed guides on growing and heating sprouts for optimal suforaphane. As far as supplements, she spoke with an leading researcher who recommended the amvacol.
https://www.foundmyfitness.com/news/s/tnmixe/which_supplements_do_you_take_on_a_daily_basis/comments/lbu58w
Tom, there are numerous broccoli sprout products. Many claim the others produce no sulforaphane. Without some independent testing you cannot be sure what you are buying.
DeletePeter, I didn't explain very well. St. Johns university is now testing & recommending "Amvocal" for clinical trials. It looks very promising.
Deletehttps://youtu.be/Q0lBVCpq8jc?t=30m19s
Tom that is a good video. It also shows how people have very different levels of myrosinase in the gut and so will produce vastly different amounts of sulforaphane, from broccoli.
DeleteIt seems strange to sell a broccoli supplement without myrosinase.
The good thing is that there are clinical trials ongoing with Avmacol.
Avmocal is available on Amazon now. It will be really interesting when people start experimenting with it; it doesn't seem like many have yet.
DeletePeter, since 29 July we have been on Enduracell broccoli sprout, non flavored. We start with 1/4 teaspoon and quickly moved to 1/2 teaspoon. At 1/2 teaspoon we have a nice daily bowel movement for 4 days. (was very evident effect because my daughter suffers for constipation - after 4 days constipation returns). Begins with the first day of 1/2 tsp she experiences what Dr. Nemechek name as awakening, as an effect of inulin. in a youtube video. We have `awakening` with Enduracell. Since then she has had hyperactivity, irritability, euphoria (laughing episodes), sleeping problems (we increase 5 times the melatonin dose without effect), behaviors that she never had before. The first 2 days she had very pale skin/face which made me thinks of the liver problem, after ok. The worsening of autistic symptoms fades the positive ones. In the last week, she uses three new words that never used before. Yesterday she biked on a bike-trailer for the first time. Since yesterday the worsening symptoms fade, but not disappear.
ReplyDeleteI mention Dr. Nemechek because we were on his protocol without knowing because of the use of fish oil, inulin (for constipation) and cooking with olive oil. Soon after I discovered his protocol and used the products that he recommended without any effect for 5-6 months. Now I return to the fish oil that we had results with it, that has omega 6 in it, that is forbidden in N protocol and switch inulin with Enduracell.
What do you think about such negative effects of Enduracell? Enduracell and Fish oil Efamol were the only products that have an effect +/- on my daughter. In the other posts, I mentioned not effects on NAC nor keto supplements. Sorry for the long post. Thank you for this blog. I appreciate a lot any of your thoughts.
Peter, since 29 July we have been on Enduracell broccoli sprout, non flavored. We start with 1/4 teaspoon and quickly moved to 1/2 teaspoon. At 1/2 teaspoon we have a nice daily bowel movement for 4 days. (was very evident effect because my daughter suffers for constipation - after 4 days constipation returns). Begins with the first day of 1/2 tsp she experiences what Dr. Nemechek name as awakening, as an effect of inulin. in a youtube video. We have `awakening` with Enduracell. Since then she has had hyperactivity, irritability, euphoria (laughing episodes), sleeping problems (we increase 5 times the melatonin dose without effect), behaviors that she never had before. The first 2 days she had very pale skin/face which made me thinks of the liver problem, after ok. The worsening of autistic symptoms fades the positive ones. In the last week, she uses three new words that never used before. Yesterday she biked on a bike-trailer for the first time. Since yesterday the worsening symptoms fade, but not disappear.
ReplyDeleteI mention Dr. Nemechek because we were on his protocol without knowing because of the use of fish oil, inulin (for constipation) and cooking with olive oil. Soon after I discovered his protocol and used the products that he recommended without any effect for 5-6 months. Now I return to the fish oil that we had results with it, that has omega 6 in it, that is forbidden in N protocol and switch inulin with Enduracell.
What do you think about such negative effects of Enduracell? Enduracell and Fish oil Efamol were the only products that have an effect +/- on my daughter. In the other posts, I mentioned not effects on NAC nor keto supplements. Sorry for the long post. Thank you for this blog. I appreciate a lot any thought.
Prada, hyperactivity and euphoria do seem to be common effects of broccoli sprout supplements. In our case the euphoria was substantial, but did fade over time. It did promote more "speech", which at that time was what we wanted, but it was very simple speech. In our case C8 + Ketoforce now promotes thoughtful speech.
DeleteNAC and keto supplements do not work for everyone.
What is clear that for some people the order in which you start drugs/supplements does matter. For some people modulating their immune system (say with Azithromycin) has to happen before anything really "works" and then previously ineffective therapies do give a positive effect. This is why you need very personalized therapy, time and patience. If someone has anxiety this may also need to be solved first, before other improvements can take place.
Prada I use a teaspoon of the PomGenex version, which likely is much less than ½ teaspoon of Enduracell, but my kid is also only 17 kg.
ReplyDeleteAt least in the beginning we saw increased energy levels - a good thing in our case. At 3 times the dose we got insomnia.
(Since starting Fisetin we've got even more energy levels but without the negatives)
Reading your comment I'm thinking that you need another trial, with a much lower dose. 4 days is just a very short time, and it is possible your daughter experienced something else during these days.
/Ling
We use broccoli florets powder + wasabi powder not broccoli sprouts powder.. does it makes difference in sulforaphane content..
ReplyDelete