One reader of this blog, who found that 2.5ml of the Australian broccoli sprout powder, I suggested in an earlier post, works wonders for her son (40 minutes after the first dose), asked if I was going to include it in my Polypill.
Then yesterday Monty’s assistant at school asked to take some powder to try on another small child with ASD. Today she tells me that the same positive result was repeated, in half an hour.
So I decided it is time to update the PolyPill.
I did tell the researcher, I was in touch with at John’s Hopkins, that it appears you can reliably make Sulforaphane at home, without your own laboratory and a deep freezer. I think they somehow prefer things to be complicated and hard to access.
It does amaze me how people are not adopting, even super-safe, ideas that might help their child. Many tens of thousands of parents affected by ASD must have read the stories in their newspapers about Broccoli (Sulforaphane) and autism. How come almost nobody has made it work at home? Or at least, that is what it seems like if you look on Google. People write about having read about it. They usually then say, “ah well, Johns Hopkins say it does not work at home and you need a standardized dose”.
Sometimes you need to think for yourself.
Behind all this is the belief that “doctor” always knows best. Most people are terrified of “experimenting” on their child. Those that actually do this, are nearly exclusively in the US, with their DAN doctors. They seem to give up after a year or two and accept whatever is left of the autism.
By the time the child is older and the parents are less worried about them trying drugs, they have given up and accepted the “inevitable”.
Reader feedback
When I started this blog, I rather optimistically expected to join forces with many other motivated, scientifically knowledgeable, parents.
This blog is visited 10,000 times a month, but I can count on two hands the number of people that have acted on it and shared their experience on/off line. There have been some really great outcomes, which is wonderful for those concerned. (great outcomes = big improvements)
Without wanting to be biblical, but having recently sat through the film, Pulp Fiction, with Monty’s older brother, this does sum things up nicely:-
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you”
It just might take you a lot more work than you expected.
PolyPill
Regular readers will have noticed that the Polypill is my formulation for treating classic early-onset autism. It is a combination of the clever ideas of others, some developed a little further, and some ideas of my own, based on the literature.
Many drugs and supplements have some impact on autism. Some make it better, some make it worse, but most have no effect whatsoever.
Drugs and supplements can have side effects and they can react with each other. So it is wise to use only those with a major impact.
Broccoli Sprout Powder
The most surprising ingredient I have tested is freeze dried broccoli powder from Australia. Who would have thought that 2.5ml of this green powder would have an effect on autism. But it does, and without any of the extra myrosinase, that I had expected to need. Johns Hopkin’s version is a deep frozen product, made after reacting broccoli sprouts with daikon radish sprouts in the laboratory.
All of people working with Monty, aged 11 with ASD, have noticed the difference, so it really is not a placebo effect
Incremental changes
· Much more unprompted speech (> 50% increase)
· He started to talk to animals and continues to do
· He opened the car window to say hello and good bye to someone he recognized passing by – totally unheard of behavior
· Increased awareness and presence of his surroundings
· Now, while the TV news is on, Monty is reading aloud the news ticker at the bottom of the screen. Before, the TV news was just “wallpaper”, unless there were some explosions or other excitement.
· Improved mood and mild euphoria
· The broccoli powder still produces euphoria
· In other people it may just improve mood
The good news is that Broccoli really is more of a food than a drug and so should not be harmful; although all kinds of things can interact in strange ways. For example, vitamin C with cinnamon is not a good idea.
Method of action
As usual, I do like to know how and why things work.
The broccoli sprouts contain many substances, at least two of which might be involved:-
1. Indole-3-carbinol (I3C). I3C has some extremely interesting properties for both cancer and autism. I3C up-regulates a protein called PTEN, encoded by the PTEN gene. PTEN is an “autism gene”.
2. Sulforaphane (SFN) is the chemical that John’s Hopkins think is the “active” ingredient of broccoli.
SFN is an activator of Nrf2, a “redox switch”. This release of Nrf2 has a known on/off effect on about 300 genes involved in the response to oxidative stress.
SFN is also an HDI, or an inhibitor of HDAC (Histone Deacetylase)
HDIs have a long history of use in psychiatry and neurology as mood stabilizers and anti-epileptics.
Interestingly, we learn from Wikipedia:-
“To carry out gene expression, a cell must control the coiling and uncoiling of DNA around histones. This is accomplished with the assistance of histone acetyl transferases (HAT), which acetylate the lysine residues in core histones leading to a less compact and more transcriptionally active chromatin, and, on the converse, the actions of histone deacetylases (HDAC), which remove the acetyl groups from the lysine residues leading to the formation of a condensed and transcriptionally silenced chromatin. Reversible modification of the terminal tails of core histones constitutes the major epigenetic mechanism for remodeling higher-order chromatin structure and controlling gene expression. HDAC inhibitors (HDI) block this action and can result in hyperacetylation of histones, thereby affecting gene expression.”
So it looks like those little broccoli sprouts might be initiating some very clever science, perhaps even some primitive gene therapy.
Conclusion
There are still plenty more ideas waiting to test, so there will no doubt be more updated versions of the PolyPill in future.
7 days so far on the broccoli sprouts + NAC with consistent positive effects. In fact, we now give it to my son immediately after waking up in the morning in order to avoid a rage. Have you tried higher doses? The standard serving size on the bottle is 5g. We, like you, are doing 1/2 that. The effect seems to last through the evening though, so I am not sure how much better the results could get. I hope this product stays available for years to come. I wonder if Super Sprouts is even aware that their product has the potential to positively effect thousands of lives of ASD families? There is no mention of Autism anywhere on their website.
ReplyDeleteI tried two doses a day and the result was less good. It made him too hyperactive. Maybe you could gradually increase the dose, but I do not see the need. I am sure the sulforaphane autism study would have been reported in Australia. There is another company in Australia with a similar product, called Enduracell. It is twice the price and is sold in the US. I think people are aware of the cancer benefit and that is the main target market. It is odd that the Johns Hopkins spin-off company with all the patents is not selling such an effective product.
DeleteAfter a long time “from seeing what you believe to believing what you see”: my son, aged 7, has been on verapamil for over five months and is still free of his chronic GI issues, which resolved during the first week of this treatment. Since October he’s off valproate given previously for mood stabilisation and instead he takes bumetanide (0,5 mg twice) with remarkable effects. Increased awareness is reported consistently by his teachers, who don’t know Lemonnier studies...
ReplyDeleteThe other recent change is that he is now mainstreamed in a typical preschool instead of individual learning in a special ed center. He has still lots of autistic issues, attends classes with kids younger than him with an aide, but we wouldn’t even think about that last year, struggling with severe mood issues and cognitive decline clearly associated with a second autism tap, perfectly fitting your description of that miserable condition from an earlier post.
As usual I want to thank you for your blog and inventions!
I hope that more parents will get encouraged to help their children. With regard to safety issues: my son was consulted by pediatric cardiologist, had an echo and ECG done, and we were reassured to continue the treatment with both these “cardiac drugs”.
I am the person Peter mentions in at the beginning of this post that has had success with NAC + Broccoli Sprouts (I am male though). I now want to implement Verapamil because SIB and aggression are our biggest problems right now. Our doctor is currently "looking into" Verapamil as a potential treatment at my request, but that of course is happening at a snail's pace with no guarantee that she will approve trying it. In the meantime, the daily rages continue with NAC and Sprouts the only thing that provides consistent relief. I see that you have effectively convinced your doctor to try Verapamil. Do you have any tips on how to "sell" Verapamil to a doctor as a treatment? I live in the US.
DeleteJB, nothing compares to this blog in terms of insight into autism treatment, but if your doctor needs more “traditional” medical literature you can show her some recent reviews about calcium channels and ASD. Here are the links and relevant quotes:
Deletehttp://www.ncbi.nlm.nih.gov/pubmed/24204377 : “The sum of the growing evidence supports the role of calcium signaling as one of the major participants in the pathogenesis of ASD, making it a promising therapeutic target.”
http://www.ncbi.nlm.nih.gov/pubmed/23675382 : “Indeed, the involvement of ion channels in mental illness represents an attractive alternative target for the pharmaceutical drug discovery, committed to overcome the limits of common neuropsychiatric drugs such as the adverse effects and limited responsiveness.”
I am not sure if that one is freely available, but I have the full text and I can mail it to you:
http://www.ncbi.nlm.nih.gov/pubmed/19154521
And here is a short comment on calcium signalling in ASD from 2004 (!):
http://www.nature.com/nrn/journal/v5/n11/full/nrn1548.html :“These findings hint at a potential mechanism that might underlie autism. Future studies will focus on the genetic analysis of Cav1.2 and other calcium channels in the disorder and the potential application of calcium channel blocker therapy”.
These words were written ten years ago and not a single trial of CCB has been done since then, that’s a pity...
Cyproheptadine (Periactin), an old-type antihistamine described here earlier by Peter, has calcium channel blocking properties and was shown to reduce irritability in ASD children when added to neuroleptic. In a Canadian paper on irritability in ASD they wrote that it “may be considered for use on an off-label basis when FDA approved medications are not effective in reducing symptoms, or cause intolerable adverse effects.”. Canada is closer to US than my country... also with regard to prescription drugs practice. Unfortunately I was unable to get prescription carnitine from US, despite my friends there tried to help me.
JB, aggression in autistic kid may be the leading or the only sign of underlying health problem, including GI, which may present without typical symptoms known to doctors, have you considered this?
You can also show your psychiatrist two papers completely unrelated to verapamil, but showing that great improvements in ASD are indeed possible if proper, “tailored” treatment is found, even though none is FDA-approved:
http://www.ncbi.nlm.nih.gov/pubmed/23666039
http://www.ncbi.nlm.nih.gov/pubmed/24399946
The last one is especially mind-boggling, as they report improvements, including a huge one, on simple biotin treatment in 7/12 kids with one particular urinary biomarker. I’ve even confirmed at my friend, a pediatric neurologist, that this study and its authors are reliable, as the results seem to good and the test is so easy to perform.
Peter, are you aware of any more people treating autism with verapamil? Most treatments in autism work for a subset of children only… and I’ve just read the message below about next success, that’s intriguing.
Sorry for such long comment, I can’t write them short. Maybe that’s why I haven’t got my e-mail about valproate and bumetanide answered by profs. Ben Ari and Lemonnier ;-) Your explanation on GABA receptors helped me much then to make the decision.
It is great that your son has improved so much. Moving to a mainstream school is a big step forwards and has some big advantages.
DeletePeople should be aware that all drugs have potential risks and checking with a cardiologist and monitoring K+ levels is very prudent. I imagine the cardiologist was surprised by the two drugs.
Later on you may want to consider the tiny dose of Clonazapam that seems to have an additional effect similar to the Bumetanide. The dose is so small it is hard to give, but there have been no side effects. At the usual large doses, it does have side effects.
I think that Verapamil is the cleverest drug, and I hope that there is potential to find further related treatments. It does affect Wnt signaling, which is related to PAK1. Excess PAK1 is linked to many things comorbid with autism:- GI inflammation, mast cell degranulation, permeability of the GI mucosal barrier and probably the blood brain barrier. It may be that Verapamil has inhibited PAK1, but nobody has claimed this. A safe PAK1 inhibitor might really help. I just started to test the propolis that contains CAPE, which is claimed to inhibit PAK1. It does not dissolve in water and it has a strong taste, so it is not so easy to give.
After your post and the comments I gave my son the broccoli sprout powder first thing this morning (the jar was sitting in my counter for some weeks because I was evaluating carnosine).
DeleteNo big changes here, only some lighter mood then usual. I will increment the quantity and observe.
Propolis we have been using for some time. It is way easier to give if you mix with something creamy like apple sauce or icecream. The taste is awful, so start slow.
Agnieszka, I am only aware of one other person who tried Verapamil. It had no effect, but neither did anything. Finally the father got a diagnosis of mitochondrial disease for the child. He then applied the therapy developed by Dr Kelley at Johns Hopkins and included in this blog. After some weeks the therapy seems to work and the autism is reducing.
DeleteI think that while there are thousands of autism variants in terms of combinations of genetic/epigenetic dysfunctions, there may be just a handful of major clusters in terms of the resulting physiology. I think that verapamil will possibly be effective in most people with Classic autism. In the same way, the French researchers claim Bumetanide to be effective in the majority of children with autism and Asperger's.
Verapamil is effective also in bipolar.
There are several common Single Nucleotide Polymorphisms associated with the Cav1.2 gene. These SNPs are known to associate with autism and Schizophrenia.
Agnieszka, Biotin deficiency is a well-known metabolic cause of autism. It is in my list of disorders leading to autism on the top of the blog. It is supposed to be checked for, by good hospitals, when someone is diagnosed with autism. It is caused by a dysfunction in the BTD gene.
DeleteIt would be better called Biotinidase deficiency, since the problem is not a lack of biotin but a problem with processing it. It is known to be treatable with extra biotin.
In reality, unless you live in a big city in the US, you most likely will never be tested for this dysfunction. So some people with treatable “autism” are lost forever, when a simple treatment is at hand.
Thank you Peter.
DeleteWhat happened in my son is not a miracle cure and we have still some major things unresolved (e.g. abnormal sleep EEG), but his quality of life is entirely different… unexpectedly. That’s why I will continue and thank you for showing me directions.
Yes, the cardiologist was quite surprised, especially that bumetanide is not registered here.
But he felt ok with the long term use of our doses: verapamil at least 3x40 mg, bumetanide 2x0,5 mg (24kg, 7yo). I check electrolytes following Lemonnier study and my son went slightly hypokalemic, so I give him K, currently looking for the most trouble-free way to do it. Anyway it’s easier to go for blood draws every month or thinking how to check blood pressure in kid in a funny way, than to get frustrated from lack of therapy progress and seeing him suffering.
So I would like to stress once more how grateful I am to you for sharing your ideas here.
With regard to the Greek study, it is strange, because they claim that all kids with increased urinary 3-OH-IVA had biotinidase deficiency checked and excluded, so they suspect some other error of metabolism, but “no clear etiology explaining the response to biotin”. Sadly you are right about the diagnostics for autistic kids: at the national reference center for metabolic diseases in my country I was advised to “lower my expectations” instead of biotinidase or GAMT/AGAT test etc.
Anonymous, for us a good way to give the Propolis is on a bite-sized piece of toast with Nutella on top. The small piece of toast easily absorbs 30 drops. Have you found it effective or not?
DeleteThe broccoli sprout powder either works straight away or never. In the US study a substantial minority did not respond. It all depends on what the underlying dysfunction is.
Agnieszka, I will make a post about Biotin, because it appears that in about 4% of people with ASD there is a treatable dysfunction that will not normally be detected, since the labs are testing for biotinidase.
DeleteBiotin is available very cheaply as a supplement.
In the UK, where I am originally from, and where many relatives work for the National Health Service, there is no diagnostic follow up at all after an Autism diagnosis. It is very strange, since after a few years untreated people with autism will become a big burden on the State. It would save the NHS a great deal of money if it diagnosed people thoroughly and then treated them fully.
Instead, some people who could be substantially improved are left to suffer and their families to be miserable.
If it was childhood cancer, the response would be entirely different.
I`m from Serbia, Belgrade - my English is bad, sorry. I have doughter, ASD, 10 years old, she is in "regular" school with personal assistent.
ReplyDeleteWe are using carnosine (carnosine extra) and I've noticed the similar effect as described with broccoli. At the beginning, mild euphoria and alertness, but, at the other side, more echolalia and scripting.
I am always in dilema about that hyperactivity and scripting… Is it realy bad?
When we went to the HBOT, doctors told me that negative behavior like scripting, echolalia and hyperactivity is normal at the beginning, at first 2 weeks, because child is getting more self awareness, so he becomes less tolerant, anxious...
Same thing happened when I gave her Carnosine.
I`ve foud this:
http://momnos.blogspot.com/2006/03/dr-strangetalk-or-how-i-learned-to.html
Scripting is more present with antioxidants. It's true. But, at the same time, paradoxically, she is good at classes with speech therapist, at Floor time therapy, at school...Even her strabismus ("psychological strabismus") is corrected. So, i`ve let echolalias… And they developed. And modify. And she is developing more spontaneous speech - short, but good sentences that can`t be learned.
Tried to add NAC (via inhalater, 2x300mg) - she became too sleepy. In smaller dose (1x300mg) - no effect. I shell experiment with this later.
Seven days ago, I`ve added Verapamil, very small dose, 2x10mg. Nobody knew about that. And all of them have used the same word to describe her behavior: "more composure".
As first effect, 20 min. after taking it, I've noticed improvement with bowel movements (lots of farting, if I may say sow...). Wandering if the effect on vagus is crucial...
Thank you sow much for this blog.
You`ve opened my mind.
Oral NAC might be more effective and it does seem to work in classic early-onset autism. It is available as Fluimucil as a nice tasting fizzy tablet, RSD 375 for 10 tablets. It should not make her sleepy. It should help with stimming/stereotypy.
DeleteYou even know the price in this God's forgotten country?!
DeleteI shell add fluimucil in smaller dose than you've recommended (coward...), since she is already using another antioxidant, carnosine. You've been already written about possibility of using both antioxidants.
I thought that the bioavailability is greater if I give it to her via inhalater. It's hard to make her take something per os.
It does made her sleepy, but maybe the real reason for that is something else, maybe virosis in that time. The testing time is too short to tell.
I shall be free to bother you again...
Hvala Vam,
Maja Dj.
I am so encouraged by Super Sprouts effect on your son. I am about to place an order for the capsules online. I don't think he will eat the loose powder on or mixed in anything. My son is 8 and weighs about 75 pounds - I'm thinking one capsule a day should work (each has 750 mg). His doctor wanted to try Abilify this fall when he started school to combat his anxiety and negative behaviors, but after reading the side effects I decided against it. We have been trying Broccomax since mid-October and I have noticed improvements in him socially. He has always been very verbal (after an initial speech delay), but has had zero interest in peers. Recently he has been talking about other kids at school which he has never done before and a little boy actually called to get together with him - I almost dropped the phone. Another thing he has been doing lately which he never did before is ask for my viewpoint/opinion on things. Perhaps it's all coincidence, but I don't think so.
ReplyDeleteBroccomax is one of the popular brands, hopefully it also works and produces sulforaphane. We are told that most brands do not produce it. One thing to try is to add some Daikon Radish Powder, which is quite cheap. This contains active Myrosinase and so will react with the Broccomax. I tried adding extra Myrosinase to the Super Sprouts powder, but there is no extra effect. I conclude that Super Sprouts does do what it claims on the label.
DeleteI found your blog while researching seasonal autism behavior. My child's development pediatrician (also an autism mom) validated my claim that my son's behavior seemed cyclical. So I'm starting today with some Claritin and going to ask for your Verapamil. I'm also excited to hear about Super sprouts since we tried other sprouts and nothing happened. What's the dose for an 80 pound 10-year-old? Lastly I'd like to know if you know of any contraindications for NAC or any of these other things with Prozac. Low dose Prozac was her idea to limit ritual but it doesn't seem to be creating lasting effects.
ReplyDeletePeople seem to find all anti-histamines will help. In fact the old first generation one may be best, since they cross the blood brain barrier.
DeleteI would start with 2.5 ml of the sprout powder, once a day.
I am not a doctor/pharmacist so I cannot advise you on contraindications. I can say that the combination of drugs I am using have not shown any cause for concern at all.
Personally, I would not use antidepressants or antipsychotics; so basically all the drugs a psychiatrist would use.
Thanks
DeleteMy son also is having a positive experience with broccoli sprout powder - better attention and communication especially. Has anyone considered that the Sulfur component itself in the sprouts is having a positive effect? It occurred to me after reading Rosemary waring's research findings ie. that plasma sulfate is significantly reduced in autism with potential implications for catecholamine neurotransmitter levels and gastrointestinal health, among other things... http://www.encognitive.com/files/Sulphur%20Metabolism%20in%20Autism_2.pdf
ReplyDeleteWaring's findings have been replicated by james Adams, who did a double blind study of nutrient status in autistics vs neurotypicals and found plasma sulfate to be 50% reduced.
http://www.biomedcentral.com/content/pdf/1743-7075-8-34.pdf
Adams has an article on transsulfuration abnormalities in autism which is also interesting
http://tested.net/vaccine/A%20Prospective%20Study%20of%20Transsulfuration%20Biomarkers%20in%20Autistic%20Disorders1.pdf
Prior to our experimentation with sprouts we had huge success simply adding MSM to fin's regime - no more food chemical intolerances! It seems miraculous that fin can now eat a high phenol diet without eczema or diarrhoea (or weird stimmy behaviour!) Interestingly, MSM contributed similar improvements to communication and attention that we noticed again when adding sprouts. Obviously I'm only one person, but the most successful interventions we've used (among many many duds!) have been antihistamines and Sulfur supplementation (in the form of sprouts and MSM). Interested to hear other peoples' thoughts??
If you are deficient in sulfur, or have some metabolic dysfunction this might affect your ability to make Glutathione (GSH) the body's main antioxidant. I am giving my son NAC, which is a precursor to GSH, to increase the level of GSH. Quite possibly, MSM is doing something similar. Sulforaphane does also contain sulfur, but we know 100% that it activates Nrf2, a redox switch, which will start a cascade of antioxidant effects. Did you try NAC? It might be good to compare MSM vs NAC vs (NAC+MSM)
DeleteIt seems that MSM can reduce oxidative stress. According prof. Theoharides, oxidative stress triggers mast cells to degranulate. Some studies prove that antioxidants inhibit mast cells degranulation. Low phenol diets look partially similar to a diet recommended in mastocytosis (both include my son’s favourites…). Would that be possible that MSM stabilizes intestinal mast cells and prevents them from degranulation in response to dietary triggers? So in effect you can eat berries without diarrhoea or red cheeks?
DeleteI might be mast cell biased as I’ve just received the results of urinary N-methylhistamine of my son: values obtained during symptoms were almost twice as high than on a quiet day. The symptoms were: increased tics, irritability, crying and some other - usually called an autistic meltdown. Could that be a direct proof of mast cell activation and “challenging behaviors” association?
Peter, do you give Monty any other mast cell stabilizer than included into the PolyPill? Quercetin or PEA or both, as you wrote before?
Agnieszka, I give Quercetin and Azelastine nasal spray for 5 months of the year (the pollen season). Due to the rather warm winter, I am still giving Azelastine. I was very surprised how effective Quercetin is. It does more than affect mast cells. Having tried it myself, I also take it. Quercetin is one of Theoharides' drugs, it is in his Neuroprotek product. His dose is very low, most supplements are 500 mg. I give 250mg twice a day. The half-life is quite short. PEA is quite expensive and its effect is much less than Quercetin. As with most antihistamine's, different drugs seems to work better on different people. In some people Claritin is ineffective for allergies, for example, whereas in most people it works very well. In Monty, Claritin works, but only for a few hours.
DeleteI haven't used any of them yet, apart from antihistamines. Verapamil and cromolyn are the two most effective in Mateusz and I also give him quite a high dose of rupatadine. Still he’s recently suffered from flares with bad headaches, which apparently have been mast cells related. Now, after the year of treatment he is more aware of what’s happening with him and he behaves like typical kids with migraines in most such cases, without so much anxiety and anger. But I can see that his headaches are sometimes really severe and not responding to common painkillers. He’s already on much higher doses of verapamil then at the beginning, when I learned about it from your blog. I hope that targeting mast cells might help. Thank you for sharing experience.
DeleteDid you research cluster headaches? They can occur in children as well as adults. Verapamil is the therapy to prevent them, but 10 minutes of pure oxygen is the therapy once you have one. There are other drug therapies, but oxygen sounds a safe one.
DeleteI wish I could receive such advice from neurologists here… You are right, I consider this. This headaches are severe and yesterday his one eye turned red during such episode. Sometimes it seems more like a migraine though, according to what I’ve read and we were told by his therapist, who happened to be a migraineur in her childhood. I‘ve just tried to find something about headaches in ASD kids, hoping for some basic clinical information, but the paper described in this blog shows well that it’s just another neglected issue in autism: http://questioning-answers.blogspot.com/2014/09/yes-people-with-autism-do-have-headaches.html
DeleteI owe it to your research that I know it’s a headache, what my son really suffers from. He was prescribed a mood stabilizer due to periodic mood issues and behaviors, now he shows us in similar situations, that his head hurts and asks me to turn off the light. Fortunately his mood stabilizer, valproate, is effectie in migraine and cluster headache prevention, so it helped him (via calcium channels? https://www.pharmgkb.org/pathway/PA165959313 ). If we didn’t switch it for bumetanide it could be still believed that my son has a mood disorder treated successfully with a mood stabilizer. I’ll get the oxygen tank, thank you!
Agnieszka, you know that on Theoharides's website he has several papers about mast cells headaches? Just scroll down to find them.
Deletehttp://www.mastcellmaster.com/publications.php
Have you tried adjusting diet to reduce histamine? or keep a food diary. Lots of people with mastocytosis have a special diet.
I think all mast cell stabilizers are likely acting via calcium channels, for example Quercetin:-
ijpr.sbmu.ac.ir/pdf_675_ce2e9ad19b9d133ca83d8a066d4fb059.html
The oxygen may, or may not help, but is worth a try.
Hi both, until recently, my son definitely had issues processining amines and phenols. What's interesting to me is how this has disappeared since adding supplemental Sulfur. Waring and Adams both postulate that, because autistic kids in general have very low plasma sulfate, they can't produce enough phenol sulfotransferase (the enzyme that processes phenols and amines, including bigenic amines like histamine as well as catecholamines). I wonder if MSM is helpful in increasing availability of sulfate, rather than just increasing availability of glutathione (which it does as well). The articles I referred to in my previous post are well worth a read in terms of the importance of sulfate. Also very interesting link to the need for sulfate to make GAGS like heparin sulfate (recent research shows that this is deficient in the brains of austism) and we also need sulfate to make the mucin that lines the gastrointestinal tract.
DeleteNicole, if it works then keep using it. Nobody really understands the odd metabolic findings in autism. There are very many and often the data is contradictory, so in some people they have high level and others a low level. Nobody knows whether these are part of the "cause" or just a consequence. Some people use Epsom salts baths to "raise sulfate", others think they are "raising magnesium".
DeleteYou certainly need sulfur, here is a paper on this subject.
Are we getting enough sulfur in our diet?
http://www.nutritionandmetabolism.com/content/4/1/24
Peter, thanks for the list of papers, very useful to have them together and a lot of new to read.
DeleteWith regard to diet: Mateusz was diagnosed with gluten and milk protein allergy - type IV, cell-mediated (with an old, in-house test, available in one academic hospital in Poland). There are also other triggers visible in him e.g pressure on skin, emotions. With such a range of possible mast cell activators along with delayed allergic response it takes time to figure the bad foods. His diet is similar to the histamine diets, but we never followed any as strictly as allergen avoidance. What I noticed was that there were periods when just any food intake produced subtle mast cell symptoms (and behaviors) in my son, this was controlled by cromolyn only. He meets the criteria for mast cells activation syndrome (but not mastocytosis) and I think that mast cell activation might have been the leading cause of his second tap of autism.
We started with behavior diary, which evolved into food diary and now it’s more of treatment diary with daily graded scale for many things. This allowed me to notice the “whole-body” effects of verapamil in a few days (and 75% reduction of vocal stimming after one month of bumetanide for example). Daily reporting is very boring but is helpful and I hope that the conclusions will be helpful for others.
The scary headaches (formerly called: mood) episodes began a long before I learned all this and were not directly triggered by food. Actually we started the diary because of them and noticed that they happen every month: exactly at full moon (not an easy task to get here a neurologist’s interest in an autistic kid crying at full moon btw). All resolved the next month after valproate and the “allergic” diet were started. The full moon could be accidental - or not. I couldn’t find much on what happens in our organisms in lunar cycle, but apparently melatonin serum levels were shown to be lower at full moon and you can find a kind of thesis from Tufts about mast cell inactivating properties of melatonin. Now the full moon is hardly influencing anything in my son, but he’s on melatonin. The episode last week occurred after nasty, viral gastroenterits. Would it be too crazy to assume that these are cluster headaches episodes associated with mast cells degranulation, possibly triggered by increased oxidative stress??
Illness, without fever, seems to make everyone's autism worse.
DeleteIt has been suggested that using anti-inflammatory drugs, at time of sickness, could help the autism.
The ones suggested were ibuprofen and leukotriene receptor inhibitors (eg montelukast). (Paracetamol should not be used in people with ASD, since it depletes GSH).
Since ibuprofen is OTC, it is the logical choice. Montelukast is approved for young children and comes as a child-friendly candy.
Thanks for advice, actually I have never given my son such drugs for minor sickness, which almost always ended in deterioration of autism related issues. Basing on what you highlighted in the most recent post, anti-inflammatory drugs may be helpful not only at time of sickness and in many people with autism. Celecoxib has been proven effective in a randomised, double-blind trial as adjunctive treatment to risperidone in ASD children: http://www.ncbi.nlm.nih.gov/pubmed/22782459. Maybe it’s useful also without antipsychotic drug. It’s not OTC though.
DeleteThere are several studies that used Celecoxib to treat Schizophrenia. It does look like anti-inflammatory drugs have promise. It looks like perhaps a baseline treatment of some sort, with something "extra" at times of "peak" inflammatory load might be best. We should avoid excessive drug use and match the therapy to the (variable) scale of the problem. Just like you would treat asthma.
DeleteHi,
ReplyDeleteAlways wondered why you didn't go the oxytocin way. Lots of long term improvements on my son (started two years ago when he was 2 1/2). You do seem a lot cautious than usual on this one (phosphatidylserine, omega 3, vinpocetine, idebenone and coQ10, acetyl l carnitine and NAC are my other favorites).
Would you advise against using broccoli sprout powder on soup? Maybe, after it cools down?
What do you find is the effect of oxytocin? Which one are you using? It seemed to me that many people were buying "fake" product over the web. Where I am, oxytocin is rarely used except for animals. In some countries there is a nasal spray drug, in others just ampules. You could of course make a spray using the ampule. It has to be kept cold and so buying by post is no good. What is your solution?
DeleteI think soup is a good idea for the broccoli powder, but my son will drink it mixed with cold water.
I should also mention much better eye contact and social attention.
DeleteWe do get the pharmaceutical Syntocinon nasal spray, with prescription. The main effect was language returning (he had regressed from 18 to 25 months) two weeks after we upgraded to common dosage (after 2 months on lower dose). Long term main effect is empathy and affective relations with family, daycare staff and the therapy staff (proper empathy and affective relations and not just common asd empathy and relations).
DeleteThat is great to hear. What dose do you now use? Did you experience any side effects?
DeleteSome of your other drugs are the ones for mitochondria. Which makes sense since you are dealing with regressive autism.
If you think it is/was mitochondrial disease there is a new drug coming called EPI-743. It turns out that this is just an analog (that can be patented) of an existing compound that is sold as a supplement “Life Extension Gamma E Tocopherol-Tocotrienols". I have no idea if they work, but apparently they are virtually identical
It is interesting how many drugs affect mood. I think a central feature of many people's autism is some hormonal imbalance. I think you can have ASD and be happy.
A sniff in each nostril, twice a day (in the morning and in the afternoon).
DeleteI didn't see any side effect. On a side note, sometimes when I don't give the afternoon dose he has great afternoons (cognition wise), but if I skip it for a while he starts to lose some of the good features it gives him. This is a strange feature. In the long run Oxytocin does the job but its occasional absence gives him an episodic cognitive jump. I believe it has to do with the non-relational amnesic feature of oxytocin (it promotes social memory but it has been claimed to reduce reason memory).
I did try tocotrienols for a while and, occasionally, still do (healthy origins tocomin supra bio). It wasn´t really a proper trial so I couldn't say if it did any good (I was a bit erratic at the time). I still have it so I might return to it in the future.
Thanks for the comments.
DeleteThe other drug I never tried, that looks like it will work for some people is Galantamine. It seems to be free of side effects in young people and there is some solid science behind it.
I'll look into Galantamine. Thank you.
DeleteHow do you measure 2.5ml of powder? We use imperial standard measuring so would that be like a 1/2 teaspoon of powder?
ReplyDeleteYou can buy silicone measuring scoops. 2.5ml = 1/2 US teaspoon.
DeleteYou just use a level scoop.
If you use a metal teaspoon, note that they vary a lot in size.
We are on day 3 of 750mg (or thereabouts) of Super Sprout powder. I thought I was 'dreaming' when we noticed much improved mood and more fluent language straight away (he is 11, HFA and moods/compliance and language fluency here go hand in hand). Then I read your post and replies and see it is not unusual to see such immediate effects. Long may they last!
ReplyDeleteI would be very interested in any studies or pointers towards direct effects of sulforaphane on neurotransmitters, especially serotonin or dopamine. I tried a quick search but couldn't find much... We are seeing some very mild tics, which usually resurface whenever we try anything that supposedly targets dopamine pathways.
We'll try to increase the dose slightly, while sticking to once a day morning dosing.
Thanks for the feedback.
DeleteThere does indeed seem to be an increase in stereotypy/tics at the start, this does fade away. For us, the effect dose remains 2.5ml (half teaspoon) at breakfast. I have added a half dose in the late afternoon, so 1.25ml at about 4pm or 5pm. You then get mood improvement later in the day and upon wakening. If you give too much, too late, then the child will be wide awake at midnight.
I do not think anyone can tell you exactly what sulforaphane does. It is not a primary antioxidant like NAC or ALA, but its effect is extremely fast. My assumption is that the effect comes from by triggering Nrf2 and its effect on numerous genes, but can all that happen in 20 minutes?
Peter, I follow your blog with the greatest interest and gratitude. Recently I ordered the broccoli sprouts powder from Australia. We tried a few days but my 6 year old sons, who are given multiple probiotics, lipids, herbals, vitamins and minerals twice a day, have balked at this, of all items. I am concerned that the high heat from baking it into a food would destroy the activity of the sulfurophane - do you know?
ReplyDeleteThanks,
Mira
You can add it to food like soup or a pasta sauce just before eating. If you cook it or bake it, you may find it does not work. One reader mixes it in grapefruit juice. My son will drink it with water, as long as he gets a piece of chocolate.
DeleteI mix it with a fruit smoothie and my 4 1/2 years son eats it with a spoon.
DeleteJoão Santos (Portugal)
The taste actually hides quite well in mango/banana/apple smoothie. My son intially objected to even home-filled caps (made 'his throat smell bad') and wouldn't go anywhere near water-disolved powder, so the smoothie passed a very high-standards test :)
ReplyDeleteI guess any other smoothie-type juice would also mask the taste well.
peter, in looking at sodium pump/ion channels, are the urine, blood and hair results for potassium and sodium relevant of themselves? or it more of a matter of the channel itself being dysfunctional later down the line, so to speak. We're seeing a very low sodium urine result, whereas the hair and serum are much more in range.
ReplyDeleteThe level in blood should be most important. If this is normal, that is good, but it does not mean there are not sodium/potassium/calcium ion channel dysfunctions.
DeleteIf you add extra sodium or potassium you produce a short term spike in the level of that electrolyte. This would then have a short term effect on many ions channels and transporters. In our case a spike in potassium levels reduces sensory overload. You cannot keep increasing potassium levels, so this is more use for diagnosis than therapy.
How much does your child weigh? I just received my Super Spout powder and I'm anxious to try it. My son is 14 and is taller than me (I'm 5'7). I'm wondering if he needs more or if the 1/2 tsp is sufficient. My son does not swallow pills and is a very picky eater. If anyone has any suggestions on what will mask the flavor, it would be greatly appreciated! I sure hope this helps! I am against medication as his body and mind are still developing and I worry about long term effects (especially on a child with poor communication skills). Thank you so much for your info. I've been researching like crazy since the study came out. I expected to see more parents reporting results (or lack of) by now.
ReplyDeleteMy son is 93lbs and I give him the same 1/2 tsp. Previous to finding this blog we had tried prozac to reduce rigid repetitive behaviors. It did not have lasting results but switching to broccoli sprouts has. He takes it with water or juice along with potassium, magnesium, and yucca root. Usually a lemonaid or orange juice works best for us. The powder smells strong but doesn't have as strong a taste.
DeleteHe weighs about 73 lbs. If you give too much your son will get hyperactive, and if you give it late in the day, he will not sleep.
ReplyDeleteMost people are suggesting mixing the powder in a fruit smoothie, to mask the taste.
It is best not to cook it, but you could add it to any kind of food/soup that has a strong taste (eg pasta sauce).
My son is drinking it in water mixed up with NAC and everything else. NAC is hugely beneficial and most people seem not to consider it "medication".
So far the only people to use the majority of my Polypill are doctors treating their own with kids. Your concern with medication is very reasonable, the drugs usually prescribed by psychiatrists have many known side effects. I would not give those drugs to my son either. However, some drugs are safe and more severe types of autism have grave side effects, (SIB, epilepsy, poor cognitive function etc).
Thank y'all so much. I'm not familiar with NAC. What is that? I do understand that some may absolutely need some medications. I hope no one took offense. We are fortunate that we don't have severe issues that absolutely require them.
DeleteAnyhow....I will be trying the sprouts and I hope to be reporting how much it helps my son really soon. :)
NAC is a supplement that was shown at Stanford to be very effective at reducing stimming and obsessive compulsive behavior. It really does work.
DeleteThanks. I'll check into that.
DeleteDear Peter,
ReplyDeleteI'm hoping you can help me. My son has a genetic form of autism and I'd really like your advice. would you be willing to share your email with me so that I can give you more details privately? Thanks so much...
Dear Peter,
ReplyDeleteI ordered SuperSprouts for my 15-year-old son who is in the midst of a school refusal. He has been mainstreamed in the high school, but has trouble attending, because of overstimulation. Please let me know how the appropriate dosage for him. Also, he is not on any medication. How do I determine what his underlying dysfunction is? Years ago, it was determined that he had a sensitivity to creatine, (milk protein - I might have forgotten the correct name) and egg whites. He went off of those foods, but can now tolerate them. He exhibits sound sensitivities, to other people's noise. Thank you.
I would start with 2.5 ml and see if it has an effect. If not try 5ml.
DeleteThere is no easy way to determine his dyfunction(s). NAC helps the great majority of people. Potassium helps with sensory issues. People with Aspergers and anxiety do seem to respond to baclofen. Any cormodities he has may help point you in the right direction.
Oh, I just read about the study of NAC conducted at Stanford. I do have a holistic pediatrician, so I'll ask him about that. I'm looking up potassium and baclofen as it relates to autism now. Thanks for your reply.
DeleteHi Peter,
ReplyDeleteMy son's dr recommended a product that is glucoraphanin (by Xymogen).
My understanding is that glucoraphanin coverts to sulphoraphane.
Is sulphoraphane (Super Sprouts) more beneficial for some reason?
Thanks
Nancy
Nancy, these broccoli supplements also need an enzyme called myrosinase to make sulforaphane. When lab testing was done most supplements contained no active myrosinase. What would be good if some lab tested these newer expensive supplements to see if they do produce sulforaphane.
DeleteSo I cannot say which of the supplements is effective. They really need to be tested.
There are some other things in broccoli unrelated to sulforaphane that are also potentially helpful.
Hi Peter,
ReplyDeleteI have been a regular reader of your blog since you wrote about the Suramin trials. Thank you for sharing all the research and what you have done with your son. It gives other parents like me hope for our children that's actually based on science.
I have been introducing things slowly to my 4 y/o son who has classic ASD. We actually started with Kudzu root extract since I was trying to find something that had an Anti-Purinergic effect. We were pretty amazed at the immediate results.
We're now onto SuperSprouts, and my question is have you heard of anyone who tried 2.5 ml with no discernible effect, but after increasing the dosage to 5 ml saw one? I've tried 2.5 ml the last two days. I haven't seen anything noteworthy so I'm wondering if I should try it or if I would just be wasting time.
Thanks,
Jolene
Jolene, I have read that some people use Kudzu, one person reporter that their child with autism responded well, but the effect lasted just a few weeks. Hopefully it will continue to work for you. Suramin is very potent across a wide range of P2X and P2Y receptors and nobody knows which one(s) are the key ones, making it hard to find alternatives.
DeleteI would try 5ml of the broccoli powder and see if you get any effect, if not I would assume your son is not a responder, not all people are, and some people become hyperactive.
Hi Jolene,
DeleteThanks so much for sharing your experience! Jolene, I had considered Kudzu (even bought it, its sitting on a shelf) but hadn't started it because I thought I read it had some estrogen-like effects.
Having said that, I have been looking at everything under the sun that has anti-purinergic effects as I believe Naviaux is onto something. I ordered Naringin and Berberine as they appear to be antipurinergic but are incredibly bitter, so couldn't give them to my 4/yo girl (she can't take capsules so I mix capsule contents in juice).
https://www.ncbi.nlm.nih.gov/pubmed/27439970
https://www.ncbi.nlm.nih.gov/pubmed/28832643
I remember thinking that Kudzu could help for multiple reasons when I bought it. I am willing to try it if you've had good results with it.
Would you be so kind to provide some details in terms of the dosage, frequency, and nature of results? It would be a big help to me.
In terms of nature of results, you note that you were amazed by the results. What did you notice (speech, cognition, and / or social improvements) and to what extent?
Thanks very much in advance Jolene, it's only through us parents sharing this info (and the wonderful work that Peter does) that we can all succeed in improving our kids.
AJ
I forgot to mention that Kudzu doesn't smell good nor taste good. I have had a lot of luck with mixing it in applesauce. It seems to hide the taste of a lot of things.
DeleteJolene
Hello Ling,
ReplyDeleteI too was one time looking up keenly on auditory processing disorder as I felt that rather than autism my child may be suffering from auditory as well as other sensory processing issues. However, its all so complex in the sense that these diagnoses are not necessarily exclusive to each other and practical outcome in terms of intervention is of limited value.
My son will be undergoing a bera test under sedation which is not really to test auditory processing but hearing....a neurologist I met recently wrote us a comprehensive list of tests for which I am grateful and which include a test for metabolic panel.
About hearing, I remembered a scene from one of the movies on autism where the audiologist does a number of test on a seemingly non responsive child, oblivious to any sound and declares the child is deaf. Moments later the nonverbal child hums some notes in a perfect replication as the two adults exchange shocked looks. Kids not only have brains but a mind as well...probably I am being unscientific here.
AJ,
ReplyDeleteThis is the third time I've tried to post this comment, so hopefully it will go through this time!
The results we saw from the Kudzu were mostly language and affection. We started giving it to him right before he turned four (June). We started slowly, and now we're at 600 mg 2x/day. He is 17 kg.
A little background on his speech - he had only been saying one word at a time, and not often. This probably happened in the last six months, despite him having ABA and speech therapy since 18 months old. After giving him Kudzu, he started saying more words, just one at a time, and now is stringing 2-3 words at a time. We do hear some functional language, however some is tacting, scrolling and echolalia. I feel like he already had these words in his head, it just gave him the extra push (along with his therapies) to get whatever hump he needed to get over.
The affection has been a delightful surprise. He has always been affectionate with me, but hardly ever with his father. He'll now come up to his dad and smile. He also enjoys playing with him, and will go to his dad and snuggle on his lap. He also will go with his dad somewhere or stay with him willingly if I leave - which is absolutely life-changing for us.
I'm not sure about his cognitive effects. I think they may be pretty mild. However, I think Kudzu works really well with the NAC. This is not very scientific, but in my opinion, I think they enhance each other.
I hope this helps!
Hi Jolene, thank you very kindly for the information! I had Kudzu in reserve but hadn't started it yet, but just started it yesterday. I started with a very low dose, so your dosing information is very helpful, especially as my daughter is about 15kg, so very similar to your son.
DeleteThe affection improvement in your son sounds terrific! We literally just started compounded oxytocin but have only seen very mild improvements (and we are spraying it appropriately, which is the key).
The good news, I would imagine, for your son is that if his socialization is indeed improving, he will be very motivated to speak at school, so his speech will hopefully continue.
Good for you to have been doing ABA and speech therapy - we have been doing same, and while improvements are slow, they continue.
My daughter, at late 3 when she was first diagnosed, was only saying a few words here and there, and in the space of about 1 year, she is now saying up to 5 - 7 word sentences. We have to prod her but she'll do it. For example, she will look at me and say "Water" and I will say "use your words" and she'll respond with "Daddy, I want water please". Giving her what she wants only when she asks with a full sentence has really helped.
Thank you kindly again Jolene for providing the extra information, it is only through parents like us sharing our experiences, that we will all benefit.
Have a wonderful day Jolene!
AJ
Jolene, Kudzu is interesting, but it contains multiple active substances (puerarin ,daidzein, daidzin etc).
DeleteIt is not clear which mechanism is working for you.
Puerarin does have an effect on P2X2 and P2X3. It can treat some types of pain because of this.
However the main use of Kudzu pills is to make heavy drinkers, drink less alcohol. Studies confirm that it really does work. This effect appears to come because Kudzu increases cerebral blood flow, and so the alcohol in your blood reaches the brain faster and the brain decides it has had enough alcohol, hence people drink less.
Many substances that improve blood flow help autism and indeed memory/dementia.
The other interesting effect is on estrogen receptors, Kudzu has been proposed for hormone replacement therapy.
I wrote several posts on estrogen in this blog suggesting that in some boys with autism it could be helpful. This all related to RORa and the lack of estrogen beta receptors.
The increased affection towards Dad, might be a hint towards estrogen. Most phyto-estrogens are so weak that have no effect on humans at standard doses.
Let us know Kudzu continues to have these effects.
Hi Jolene, it may be coincidence but ... we have seen some really interesting changes in our daughter over the last 24 hours, coinciding with my increasing the Kudzu dose to about 50% of where you are (300mg X 2).
DeleteMy daughter was hugging us proactively (normally we hug her, today she hugged us), had such a good day at school that the teacher noted she was in an unusually great mood all day, and now she just went to her OT and they noted that she was unusually good (no fuss, no transition issues, etc.). Another thing I noticed was that when my wife was helping my daughter wash her hands, my daughter was happy and even giggling, which I've never seen before - she is always whining when we want her to wash her hands.
Maybe the planets are all aligned today and it has nothing to do with Kudzu, and we return to our regular programming tomorrow, but my wife and I are remarking how many good and unique things we've seen today that are out of character.
I'll keep you posted, and again, thanks so much for sharing your experience. That's what got me to give Kudzu a chance, and hopefully the changes we're seeing will remain.
Have a wonderful day Jolene!
AJ
That is interesting about the estrogen effect. I had read your posts on estrogen, and I remember my husband and I chuckling a little at the first one because my son has been so "male" from the get go. We affectionately refer to him as our little bull sometimes. Although it seems the effects of low estrogen wouldn't manifest themselves until later, I think we are seeing some of it now. It's definitely something to keep in mind when he gets older.
DeleteI wanted to also mention that the affection wasn't only towards his father, although that is where we have seen the strongest reaction. It has been towards all people in appropriate proportions. Kudzu is continuing to work for him.
We are now trialling Biotin. Can anyone in this community let me know their experiences with it? Did anyone see no effect until they hit the right dose, or gradual effects? Was there overall improvement, or just in a specific area? Thanks in advance!
Jolene
AJ,
DeleteThat's great! Regardless if it was Kudzu or not, it's always so nice to see your child in a happy mood. Please keep us updated.
Jolene
Jolene,
DeleteMy son is 5.7 and though he is a able to string four to five words together, it is with great effort. He started using mama, milk and baba at 11 months and never got stuck at that till three when he started speaking single words, though with lot of prompting. He is not a passive child, very affectionate and demanding and happy so that is a plus point but anything that makes speaking easier for him will, i feel, have a great impact. We are, apart from teaching him manding, tacting and intraverbals also trying to teach him declarative language and to comment on say picture. Its not easy for him at all. Could you please share the starting dose, how you increased the dose and the brand of kudzu you used. My son is 25 kg and sensitive to most supplements.
Hi Kritika,
DeleteI use the Vitacost brand. I got it off Amazon. I started at 300 mg, which is half a pill and a quarter of suggested dosage. I increased it by 300 mg every few days until I did not see a big difference between dosages.
I hope this works for your son!
Jolene
Jolene,
DeleteThank you so much for that information. I will place an order and share how my trial goes. Best wishes for your son.
Hi Jolene and Kritika,
DeleteI just realized from your post Jolene, that since I also have my Kudzu from Vitacost, that I've actually been dosing my daughter at 150mg X 2 per day versus 300mg X2, as the bottle says 1,200mgs but that is for 2 capsules, not one as I had assumed.
Again today, my daughter's teachers are asking what we've done as the change is very noticeable. I can't wait to see if we see more change once I actually do get us to 300mgs X 2 versus the current 150mgs X 2.
By the way, one of the other comments we've gotten over the last couple of days from her therapists is that she is far less distracted, and is able to focus better.
I don't know if it's the Kudzu, oxytocin, combination of the two, or natural progression, but its clear something has changed for the better.
The changes we are seeing include more eye contact, more interaction (apparently my daughter is playing more with the other kids), and more affection, and it was very soon after 150mgs X 2. No language improvement seen (yet) and no cognitive improvements seen (yet) but if affection, socialization, and focus improvements are sustained for the long term, or continue to improve, this was a success in my eyes.
Thanks again so much for sharing Jolene!
AJ