This time of
year many parents in the northern hemisphere are looking up “autism and allergy”
on Google and more than 20,000 have ended up at my post from 2013 on this subject.
Not just for Stomach Health
It is clear that many people have noticed that allergy makes autism worse, even
if your family doctor might think you are imagining it.
This year,
thanks to our reader Alli from Switzerland, there is a new innovation in my
therapy for Monty, now aged 13 with ASD.
Now we are firm believers in a specific probiotic bacteria to dampen the
immune system (more IL-10, less IL-6 and likely more regulatory T cells) and
minimize the development of pollen allergy and all its consequences.
There is a wide
range of H1 antihistamines, mast cell stabilizers and inhaled steroids
available and many readers of this blog are using a combination of some or all
of these to control allergy and mast cell activation.
By using the Bio Gaia probiotic bacteria the magnitude of the allergic response to allergens is substantially reduced, so whatever problems allergy worsens in your specific subtype of autism, these should become much milder.
In our case the allergy will trigger summertime raging and loss of cognitive function.
The use of
the calcium channel blocker Verapamil very effectively halts/prevents the
raging, but it does not reduce the other effects of the allergy or the loss of
cognitive function.
The use of the Bio Gaia probiotic reduces the problem at source; it greatly reduces the allergy itself. Less allergy equals less summertime raging and equals less loss of cognitive function.
So for anyone filling up on antihistamines, steroids and mast cell stabilizers it could be well worth reading up on the studies on probiotics and allergy, or just make a two day trial with Bio Gaia.
Prior to Bio Gaia, we used Allergodil (Azelastine mast cell stabilizer and antihistamine) nasal spray or the more potent Dymista (Azelastine plus Fluticasone) nasal spray, plus oral H1 antihistamine (Claritin or Xyzal) and sometimes quercetin. Verapamil was introduced to halt the raging/SIB caused by the allergy, which it does within minutes or can be given preventatively.
Each year the pollen allergy got worse than the previous year, starting five years ago at almost imperceptible and ending up with blood red sides of his nose. With Bio Gaia there is just a faint pinkness at the side of his nose.
There are additional positive effects of Bio Gaia beyond the allergy reduction, but they do seem to vary from person to person. In our case there is an increase in hugging and singing. The research on this bacteria does show it increases the hormone oxytocin in mice.
In some people
without obvious allergy, Bio Gaia’s effect on the immune system can also be
quite dramatic. In some people the
standard dose is effective, but in others a much higher dose is needed. The good thing is that the effect is visible
very quickly and does seem to be maintained.
The main post on Bio Gaia is here.
Bio Gaia is
based on serious science but is available over the counter.
Hi Peter,
ReplyDeleteAutistic and even other individuals sensitive to environmental changes seem to just topple over during change of seasons in India also but here it does not seem pollen related allergy..or could it be..but just a body thrown out of gear due to weather change. And this does not go on for an entire season but only during the transitional phase. Most of us who face hyperactive and sensory imbalanced kids for aabout a month, twice a year, and mind you we have a very strong seasonality in northern India, just wait it out.
Due you think the probiotic biogaia might make a difference for us as well? I was not really interested in probiotics as I had tried saccharomyces boulardi which probably made my son irritable
And biogaia gastrus is very expensive too. But I was interested in the other benefits it seem to be imparting. The catch is I suspect the internal biome in populations occupying different geographies might be dissimilar so what works in Europe might not work on Asia. By the way my son foes not have GI or allergic issues but even a slight gastric disturbance ..a little gas .
.sends me as well as my son into profound discomfort and my son is autistic. So if biogaia is worth a try I will put it on my list of things to be trialed this year on my son.
You can also try Biogaia Protectis, which is cheaper and the one they sell where I live. The smallest pack of 10 tablets costs here about 5 Euros. After a few tablets you will know if the child responds. It seems a price worth paying.
DeleteAlso the study shows that L.Reuteri 17938 increases vitamin d3, increases oxytocin and serotonin and GABA (this GABA helps support the pruning process). I am 100% convinced it is working for my son. The improvements of the last 2 months are emense :-) <3. I don't know if it will work for all on the spectrum, but I plead with ASD parents who want to see their children less stressed, calmer, less anxious.... And the follow on from that well who knows. <3 https://youtu.be/TfbhC7jr3cA
ReplyDeleteSuzanne, what dose are you giving your son?
DeleteIm very torn. We have been trialing both Vivomixx and L Reuteri 17938 and there seems to be a difference in effect. On L Reuteri stimming stopped. Two weeks in on Vivomixx GI health seems better but the social response-effect seem to have lessened in comparison to L Reuteri. The Idea of the italian trial seems to be repairing intestinal health. Does l Reuteri have similar properties? Do you think you can take them together?
DeleteZ, the Italian trial is looking at kids with and without GI problems. Vivomixx is itself a mixture of different bacteria, so adding one more does not seem odd.
DeleteYou would expect the effect to be different, so you just choose based on the effect you want.
Thank you for a quick reply!
DeleteWhat i'm mostly worried about is that while the bacteria in Vivomixx seem to have mainly anti-inflammatory properties (thus good for mucosal lining of the gut), L Reuteri is pro-inflammatory and can cause histamine responses.
Adding to this is also my experience of my own little hero becoming instantly affected and sometimes quite hyper on L reuters whereas Vivomixx seems to have lesser, although more stabilizing, effects.
My dosages has been/is:
Vivomixx 900 billion CFU (as in the study)
L Reuteri 17938 100 million CFU (as suggested on the bottle of swedish "magdroppar").
I am no probiotic expert, but L Reuteri bacteria is generally anti-inflammatory and not pro-inflammatory. This is why it can help with GI problems like IBS and IBD. It greatly reduces my son's pollen allergy at 300 million CFU.
DeleteI think you can safely experiment. Perhaps you need less Viviomixx and more L Reuteri? The result is going to vary from person to person based on diet, what other bacteria they have and their immune status.
L Reuteri ATCC PTA 6475 (type in Gastrus vs Protectis) increases histamine initially but offers anti-inflammatory properties through other, quite interesting routes (TNF!):
Deletehttp://www.ncbi.nlm.nih.gov/pubmed/22384111
It strikes me that parents who give Biogaia by itself (i.e. absent other histamine attackers) may have an unpleasant experience if their child is histamine responsive initially, maybe the best way is to use other histamine combatants and once stable introduce Gastrus?
Mossy, thanks for that link. People find a histamine-like reaction to gastrus should read it. Perhaps starting with Protectis is a good idea and then add Gastrus and see if the effect is better.
DeleteHere is an update on the Biogaia Fermented Milk/Yogurt progress after quite a bit of trial and error combined with my judgement and my experience in the past in making our own homemade kefir, I have come to a couple of conclusions:
ReplyDelete(1) You can make a single batch of yogurt that tastes OK after about a 2 day ferment, but trying to use a small amount of the original batch of yogurt as a starter culture for the next batch does not work very well as I am pretty sure other natural bacterial strains from the environment are contaminating the original two species and outcompeting them because instead of a yogurt taste and smell you end up with a tarty taste (which suggests lactose being converted into alcohol) and a foul smell (which means spoiled milk). This is all of course done with milk that is boiled in a clean mason jar and brought to a cool before adding the starter culture in.
(2) When making kefir, how long you ferment determines what kind of probiotic properties are in the end product. The longer you ferment, the more alcohol is produced which can run up to 4% (basically what beer has). So usually, you want to be somewhat diligent about not overfermenting. In the case of the Biogaia Gastrus fermenting for more than a day yields unpredictable results and more of a tangy taste (which suggests a secondary state of fermentation into alcohol).
(3) Because contamination seems to be an issue and I have no idea how robust these reuteri strains are relative to natural environmental strains in COW MILK of all things, the method I have settled on is to boil milk, cool it down in a mason jar (with a lid on to help minimize contamination), then once the mason jar is room temperature, take the lid off, drop one Biogaia Gastrus tablet in (no need to crush it), and then quickly put the lid back on and then put it in a shelf, preferably in the dark. Wait about half a day and then shake it up, then wait another 12 or so hours and serve. If you wait much longer, you will start getting more of a yogurt texture as opposed to a sweet milky endproduct. This is obviously more expensive than trying to reuse some of the original batch for subsequent batches, but my results were too inconsistent using this method, so I recommend using a single Biogaia Gastrus tablet as a new starter culture each time.
Not related to allergies per se, but a new study seems to suggest some people have non-celiac sensitivities to wheat, barley, and rye:
ReplyDeletehttps://www.sciencedaily.com/releases/2016/07/160726123632.htm
Yes I know this has been hypothetically debated back and forth for decades and personally I am more in the camp that the GFCF stuff is a bunch of nonsense, but this is an interesting study that suggests some points contrarian to mine in which maybe a subset of those with autism due to general immune dysregulation, a weakened gut could be a comorbid symptom (certainly not the prime cause) of autism that exacerbates other symptoms. Unfortunately, restrictive diets like GFCF are low in soluble fiber which is critical to keeping the gut lining healthy and impermeable to pathogens which can make the problem theoretically worse. Of course, there are many gluten free soluble fiber options as well, but I don't think most parents who do GFCF supplement soluble fiber and if they do, the fiber does not come from a diverse source.
Now with respect to milk, there is also some recent research suggesting a particular strain of bacteria inherited from the mother is critical to keeping the gut of an infant from inflammation and this particular strain of bacteria only responds and grows via a very specific oligosaccharide (soluble fiber basically) that comes from HUMAN breast milk (human breast milk has more soluble fiber oligosaccharides and a greater variety of them than any other mammal). Cow's milk, especially after pasteurization is wayyyyyyyyy different than human breast milk of course, but cow milk has at least some FOS. So what I am suggesting is that rather than just focusing on theoretical foods and substances that may cause intestinal inflammation, it might make more sense to focus more effort first at making sure children get the right types of fiber (specific to human bacteria) and the right amount of it. On top of that, specific probiotics such as the ones being discussed right here at the moment might be more important than focusing on what not to put in the body because food is complex and the only way to keep food simple is a restricted diet (which seems to not be what is best for the microbiota which seems to like diversity).
On top of that, some research I read not too long ago suggested soluble fiber (i.e. not metamucil) is what the gut needs (insoluble fiber was suggested as negatively affecting the gut lining) to be able to handle a high-fat diet because when the digestive system detects fatty acids, the gall bladder dumps a bunch of bile acids into the intestines to break down long-chain fatty acids into simpler fatty acids (unless the gall bladder has been removed in which case the liver dumps bile acids). The problem is that bile acids erode the intestinal lining, however, this research I mentioned on soluble fiber found that the short-chain fatty acids such as butyrate that are produced via fermentation of soluble fiber which the intestinal cells use as an energy source, then quickly repair the damage and you don't get intestinal permeability. In other words, if you eat a high saturated fat diet without soluble fiber, then you risk getting intestinal inflammation (possibly leading to a leaky gut), but if the diet has a lot of soluble fiber and a diverse gut microflora, then you should not have any problems (well I know it is simplistic thinking with respect to autism but it is a start).
Hi,
DeleteI feel whatever is healthy or unhealthy for everybody else is so for autistic individuals also but the discomforts due to minor imbalances might trigger huge sensory and behavioural issues in autistic kids, not in the least because of anxiety and communication problems.
Dietary fiber has an important role to play as it bulks up intestinal matter thus easing out constipation and it also acts as a substrate for intestinal flora. In fact I came across a site (Dr. Ne Mechek) claiming to cure autism (alarm bells ringing) through inclusion of inulin, a probiotic fibre available OTC. Anybody has experience with this?
As far as various diets are concerned I know parents with high functioning kids who tried the diet at some point of time and it helped but they tried a lot of other things as well.
From my limited personal experience, a number of interventions help but ultimately out of say every five dramatic improvements only one or two will stick. This also holds true for the spontaneous improvements that kids show..three miraculous behaviours but only one sustained.
What I am trying to say is that probably the autistic brain under a sudden change in biochemical mileu jump-starts and then reverts back to the old pattern but not before it has acquired some small but stable gain. So over time all those incremental improvrments add up to bring about a big transformation.
Hi, sorry for the typo. Inulin is a prebiotic not a probiotic. Essentially a prebiotic is something which promotes growth of specific microbes unlike a probiotic which consists of specific microbial populations.
DeleteKritika
Tyler - I'd be very grateful if you could post the references to the type of bacteria "inherited from the mother" you have read about. What is it? Where does it come from? How is it transmitted? I promise I am not being prurient or trying to embarrass anybody. I'm sure everybody here knows there is a statistical link between caesarian section & ASD. Do we know enough about vaginal and/or adult anal microorganisms to say whether they need to be in the baby as a precondition for other good bugs to take hold?
DeleteI'd also love to read the research on the necessity of using soluble fibre if you could post links. (BTW I thought Metamucil was mostly just psyllium husks & therefore soluble fibre?)
Kritika - nice description of the stepwise development of the autistic brain: certainly parallels our experience. Alexandria
Yes I supplement all of my children soluble fiber which includes inulin, because their normal diet is not very good in the vegetable department because well they are picky and will fight me to the death on almost all of them (I have had limited success with green peas and that is about it). I also take plenty of soluble fiber myself because the reality is that it is very, very, very hard to get the amount of fiber our bodies really work best on, even if you eat kale 24/7. The average American gets maybe 15 grams of fiber today (that seems generous but it is what I read), and the integrity of the gut does best on 60+ grams of fiber a day (this is general plant fiber, not any specific kind and there was no mention in this particular study of the ratio of soluble fiber to insoluble fiber).
DeleteWith respect to soluble fiber, I currently give inulin as well as a 50/50 mix of potato starch and barley flour (beta-glucans). My feeling is that it is not so much quality of soluble fiber that matters, but the variety and quantity. For reasons unknown at this time, a complex microflora seems to be associated with all the good stuff (good cognition, aging, proper immune function) and a simple microflora is associated with irritable bowel syndrome and autism as well (not to mention many other underdesirable diseases). Of course the chicken and the egg problem arises here with fiber and a diverse gut microflora, but it is my personal belief that you can attenuate a lot of the worst side-effects of poor eating habits if you simply supplement a good variety and a significant quantity of soluble fiber (just my opinion on what I know).
I don't think inulin is a miracle cure for autism obviously, but supplementing it would be a good idea if the child is not eating a massive amount of vegetables (which is just about nobody with severe autism), especially since many animal models have shown how vulnerable the gastrointestinal tract is to inflammatory insults in particular the proper functioning of the enterochromaffin cells which produce melatonin, a potent antioxidant, needed to help attentuate gastrointestinal stress.
Hi,
DeleteTyler,you are right on target when you hypothesize that a diverse microflora in the gut is good for the body. The reasons are not unknown; it is a well established ecological theory that more diverse and complex an ecosystem is, the more stable it is. And the human gut is also an ecosystem. There is a difference between diversity and complexity, complexity being a measure of how interconnected the different species are which is much more than just a numerical strength . As ecosystems evolve, simple, less diverse communities are replaced by complex communities and the whole ecosystem becomes stable as well as more resilient to environmental challenges due to internal feedback mechanisms and functional redundancy of the species. But on the downside once complex communities collapse it is difficult to restore them. Hence probiotics for instance will only give you only that much benefit.
Come to think of it, the human sprcies, stupid that we are, simplified our external and internal biological environments as we evolved. It's not only the gut biota that we disturbed, we lost the as yet unknown benefits of poly aromatic compounds, the smells of nature and I am sure a host of beneficial sensory experiences.
Come to
.
Well, what you are saying with regards to diversity and complexity and its analogy to larger ecosystems is a theory and one I lean towards but it is not proven with regards to the gut and it likely won't be one way or another for a long time.
DeleteI am just saying that a diverse microflora at this time is associated with desirable indicators of overall health, while a simple microflora does not seem to be the case, but this is all correlational. And just to be contrarian here, in some obese people, they seem to overferment fiber which causes an excess production of short-chain fatty acids that are absorbed by the intestines and then shuttled to the liver where they are then converted into long-chain fatty acids (such as palmitic acid AKA saturated fat) and stored as fat. So there can be too much of a good thing for some people.
Hi Tyler,
DeleteSeems you meant a diverse microflora when you made the too much of a good thing system and not dietary fibre which I mistakenly assumed. Sorry ..and that a simpler gut community is better for some people is interesting and new to me.
Hi,
ReplyDeleteAll good things can become too much of a good thing. Dietary fiber when consumed in excessive amounts can make not only some obese people sick but also those with optimum health. A balanced mix of complex and simple carbs, fats, vitamins and minerals plus water, a little fine tuned to individual constitutions, is what the body requires and that's a no brainer.
Also, nutrients in a food item, say a fruit, probably act in a synergistic manner, where whole is more than sum total of parts, to confer multiple benefits. Therefore it seems common sense that we try to obtain nourishment from as diverse a food base as possible. The positive correlation between a diverse microflora in the gastrointestinal tract and indicators of wellness might also be linked to synergistic effects.
The practical takeaway from the diversity issue is that exposure to variety in diet, physically and sensory experiences, and interventions such aba, rdi, floor time, validation and joining, and sometimes the old fashioned yelling (i did not say spanking) depending on the child's profile at a particular time and the energy and time available to the drained out parent, would be more beneficial than sticking to a fixed protocol.
The big takeaway for me is that it's time I try out pharmacological interventions on my son, the nac, bumetanide and the probiotics as well.
Seasonal allergies can get debilitating since some people experience severe symptoms. Those few weeks to months per year easily become a nightmare for the ones that are sensitive to seasonal allergens.
ReplyDeletePeter,
ReplyDeleteWhat are your thoughts on CBD oil (the non psychoactive ingredient in marijuana)? I'm not sure if it is something people are trying in other countries, but in the US parents are using one called "Charlotte's Web" named after a little girl who had a serious seizure disorder and had much success with the treatment. Just wondering if you have any experience with it or thoughts. Thanks!
I meant to include what it is being used for in terms of autism and that is ANXIETY. Thanks
ReplyDeleteCBD oil seems to be used in typical people for anxiety. There are several proposed mechanisms. I have no experience of it. I am not sure people always mean the same thing when they talk about anxiety, particularly in autism when the person cannot explain their feelings.
DeleteHi Peter, today will met the uruguayan cientific from Houston, Costa Mattioli, is there any special question would you like to make him? let me know, Valentina
ReplyDeleteFYI, here is a new review article released in the last day or so which discusses the microbiota and neurological disorders (including autism and no pay-wall):
ReplyDeletehttp://online.liebertpub.com/doi/full/10.1089/biores.2016.0010
This is a very strange paper I read today that relates to allergies and neurogenesis:
ReplyDeletehttp://journal.frontiersin.org/article/10.3389/fncel.2016.00169/full
Basically, the gist of this is that in a model of hayfever in mice, they found that there was increased neurogenesis in the hippocampus (an area of the brain that seems to be under a lot of stress in autism, likely from a leaky BBB). Furthermore, when they tried to figure out why, they found that allergies reduced the number of microglia (which are thought to be hypervigilant in autism as related to the cell-danger response theory).
When I was a kid I had terrible allergies to hayfever, dust, and of course our cats which I loved dearly even though they made me have a lot of allergy symptoms. My allergies never really subsided until I was an adult and started supplementing fish oil (could be a coincidence). I have 4 cats now and no allergies anymore even though I had really bad allergies to my first of 4 recent cats when I first got her as a birthday present from my mother who apparently forgot how allergic I was to cats when I was a child. None of my children have any symptoms of allergies so far (I have always made sure they had been exposed to just about everything as babies in the hopes they would not have to go through what I went through), which makes me wonder now if somehow certain types of allergies can be protective with respect to autism severity. My father also had terrible asthma as a child and in his 20's as well (almost killed him once) and then it pretty much disappeared in his early 30's after divorcing my mother. His childhood from what he said involved living in a house that was cleaner than a clean room in a science laboratory, so some of his asthma problems could of been to growing up in a sterile environment.
Now whether allergies could potentially in some way be strangely protective of autism symptoms is a far flung speculation on my part, but it is a contrarian viewpoint that in conjunction with this paper might be worth exploring when it comes to long-term changes in autism symptoms.
Tyler, Peter, hi, wanted to ask you if could take betaine,TMG, instead of folate & methyl b12, iam mthfr c677t,homocygous, also can't process sulfur, i think is asocieted with a cbs downregulation. But could it be possible, to take only TMG instead of folate and b12? Could be better tolerated?Valentina
ReplyDeleteIn the an old study (like 5 years or more old) I can't seem to find the link to (I want to think Rossignol was the author), they successfully reduced homocysteine levels in children with autism by supplementing folinic acid, methyl B-12, and TMG together which is a pretty common stack for autism. I have not seen much followup to that study, but I supplement those three for a variety of reasons. A recent study in the last 3 months or so showed that kids with autism tend to have normal B-12 levels in the body but only 1/3 the levels of a normal child in the brain, so supplementing a lot of B-12 may not do much if it can't get to where it needs to go.
DeleteBut could I take TMG without the other two? wouldn't be enough with TMG?
DeleteWell, there is no real medical guidance on autism in this area, but conventional wisdom among the supplementeers is that they should be stacked and that they are all synergistic. The main reason for stacking them is that it is thought that those with autism have a disrupted folate cycle and that oxidative stress depletes methyl donors in the folate cycle and TMG in particular which I believe has three methyl groups is supposed to be good at lowering homocysteine levels (a biomarker of oxidative stress).
DeleteHi Peter,
ReplyDeleteI read about your blog, I have my ASD son he's 6 years old and still non verbal, he started getting his allergy about 4 months back with rash on his palm of his hands and bottom of his feet, whenever he got that, he's really aggressive, we got kicked and headbutted including scratches couple times. we already took him to allergist, he said that he got big allergic to pollen, and he suggest the immunotherapy, all this time we only start twice shots, but everytime he got the reaction its going to be severe and it always happens every 2 hours, we are so tired. We are going to try your product, but before that we like to learn the fact first from you if you could explain to us, if you need more info, please reply to my comment here. thank you
There is lot of information in this blog about autism and allergies. I suggest using the site index to read about mast cells, allergies, verapamil, mast cell stabilizers etc.
DeleteIn my son what helps is:-
1. Modulating the immune response (Biogaia probiotic)
2. Control the allergy with H1 antihistamines and mast cell stabilizers. (Azelastine nasal spray) Other people use ketotifen, cromolyn sodium, claritin, quercetin etc
3. Block the aggressive behavior that is triggered by what remains of the allergy. Verapamil 20mg three times a day. It is effective for 3 to 4 hours. Works from the first dose.
Peter, My child does not have aggressive behavior, but more obssessive and anxiety behaviors when there is a flare. Do you thing Biogaia would help for this type of situation? My child does not have allergies. He responds well to Aleve however. Wish it came in capsule too.
ReplyDeleteAleve is a brand name for the NSAID naproxen. He probably with respond to other drugs of this type like Ibuprofen that have fever GI side effects. These drugs are anti-inflammatory, and so the anti-inflammatory effect of Biogaia may well help. It is very simple to find out, just try it.
ReplyDeleteHi Peter, I was not aware that ibuprofen had fewer side effects than Aleve/naproxen. I thought the gi side effects were similar. Can you comment? In lieu of nsaids, do you think Sytrinol is the safest and best alternative? If not, what do you think? I wish Biogaia came in a pill vs. edible as easier to take for my child in pill form but will try it out.
DeleteMy understanding is that ibuprofen is the best tolerated NSAID and that is why it is so widely given to children. They are all slightly different, Ponstan for example is better and lowering temperature. If Aleve works well and gives no side effects, stay with it.
DeleteSytrinol is worth trialing.
You can dissolve the Biogaia tablets and the Protectis probiotic is also available as a liquid. Biogaia Protectis works well for us.
Hello peter,
DeleteMy son's DPT shots and oral polio dosing is due. This might be his last scheduled vaccination ae he is 4.6. I am slightly nervous as I suspect that although he was born different, his natural compensatory brain development was halted perceptibly (although each immune assault might have caused invisible hits) after his MMR, shortly followed by flu which compromised his immunity so much that he came down with typhoid which is accompanied by high grade fever..typhoid has become so rare amongst the middle and upper class in India that even my son's paed was shocked as to how a one and a half year old from a decent background caught the infection. Well, my son's autism kept on becoming more prominent henceforth till the age of two. I was already convinced about his autism by this time and though did not pronounce it, had started working on my son at home. A combination of his diet, lots of broccoli, beans, fruits and no sugar till the age of three,my constant hovering and his own developmental trajectory and biology, probably saved him from descending into severely autistic state.
My specific query is
1. Can I avoid vaccination damage by dosing my son on nac and brufen a few days before and after his shots? I think I had read it somewhere, probably your blog but can't find it now.
2. Nac is supposed to help catalyze conversion of glutamate to gaba apart from enhancing production of glutathione. But if gaba behaves in an aberrant manner in certain autism, and my son happens to have that type, nac might lead to more excitation. I am sure I am missing something obvious here. Please explain
Regards
At Johns Hopkins in the US they diagnose some people with autism secondary to mitochondrial disease (AMD). In people with AMD they treat them before and after vaccinations with drugs to avoid an immune over-reaction to the vaccine. Apparently they use common drugs like Montelukast and Ibuprofen. I think I would now add the Biogaia probiotic to that list. NAC would not counter inflammation, but would reduce the associated oxidative stress. I would not overdo things or else you may stop the vaccine having an effect. If you are really interested contact Johns Hopkins and ask them about dosages etc.
DeleteNAC is harmless to trial and if it helps you can continue, if it makes things worse you just stop. Many people report very positive effects, but a small number have some negative effects. If GABA "works in reverse" you will benefit greatly from Bumetanide.
Hi Peter,
DeleteMy son has classic early autism but a low CARS score because of absence of rigid behaviour and much stereotypy. However, his language and social beaviour is so underdeveloped. I mean regressive or classic, once the groundwork of genetic predisposition is laid, it's a matter of what combination of biological dysfunctions manifest as autistic behaviours and when. Genetic predisposition is implicated in all maladies, big and small, so that leaves us with the biological dysfunctions, many of which might be treatable.
Contacting John Hopkins is possible and I know in case of identified mitochondrial dysfunction one can follow a protocol to minimize vaccine damage, opt for single antigen and not combination vaccine and even skip the option of vaccination. But that is more easier said than done and I am in India where even biogaia probiotic takes one month to 'not' reach me. And then it's another one month wait. Therefore individuals like me would rather consult your blog..to find pragmatic options and alternatives.
I also feel that there is no clear distinction between regressive and classic infantile autism as the social deficits of autism become apparent a little later, around one and a half year. Only in a small percentge the child is speaking in sentences and then crashes...and therefore some drug therapies will help most autistic behaviours.
I am not paranoid about vaccinations or anything else at the moment but treading the middle ground.. moderating the possible aggravating factors.. anti inflammatories, anti oxidants..being conscious about those.
Again, you reiterate that one should trial bumetanide. Well, I would if I could procure it. Everybody is serious about treating their child..it's about allocating precious resources to available treatments and pursuing to get access to the non available ones if they seem to be of significance.
Well..can someone tell me where can you get bumetanide in India and do the Spanish online pharmacies ship clandestinity to India?
The other names for bumetanide include Bumex (USA) and Miccil (Mexico). Google "Miccil 1mg". I expect they will ship to India.
DeleteThanks.
DeleteI was considering the Mexican pharmacies but wondering about their credibility and if they ship to India as the sites were a little, pardon me, shoddy.
USA is useless.
Even a relative of mine who is a professional working in some hospital in New York declined to help me in absence of prescription.
Let me try Mexico.
Have you thought about checking Singapore, Malaysia, the Midlle Eastern countries or even Sri Lanka?
DeleteIn Mexico, selling prescription medicines cheaply is a big business, and they have a lot of American customers. Most Americans have prescriptions, they only buy from Mexico to save on costs. If they cannot guarantee quality, their business would quickly fall apart.
I have also heard of a Miyaki Family Pharmacy out of Japan.
Incidentally, bumetanide is available in Bangladesh also..online purchase seems to be a problem though. Had been checking Mexican pharmacies..some of them asking payment in bitcoins..Stephen Cohen?
DeleteI will search about options in the countries you mentioned..or try Mexican pharmacies. It's not about money wasted as fortunately bumetanide does not cost much relatively even when purchasing online at least say for a hundred days supply. I am worried about the quality control.
My husband works as a climate change scientist in the Swiss embassy and had just travelled to UK. Wish I had known then..he could have bought OTC.
Let me try two three places..will let you know.
Regards
Bumetanide is not OTC in the UK
DeleteDoes anyone have an idea about the credibility of online pharmacy mynetmeds.comprar-medicina.com? Appears to be Mexican. They are offering bumetanide under the brand name of fordiuran and ship worldwide.
DeleteAny other reliable site?
Is anybody else purchasing online or are Americans driving down to Mexico to get their supplies?
is it helping with allergy issues or blood sugar control? for my son this probiotic definitely elicited histamine type reaction. ~Tanya
ReplyDeleteTanya, in our case it is visibly helping reduce the allergy, there is a change in the colour of my son's nose (less inflamed).
DeleteIn other people the effect clearly varies, and this must be in a large part depending on their immune status. If the immune system is "over-activated" this probiotic is likely to help, but you can be diagnosed with autism and have a quite different immune profile.
Blood sugar does seem to be relevant to some people with autism and they seem to benefit from a hypoglycemic diet (like a diabetic person). For my son eating his favourite gummy bears does not affect his behaviour.
Tanya,
DeleteI started L Reuteri with the hopes of just increasing my son's sociability and communicative behaviors, allergies were a distant second for us though there were great results happening here with the Biogaia. I just wanted to see if my toddler would interact more with me after taking this, and he did. It was within hours I saw a difference and so it is now a mainstay in our arsenal. However he deals with "leaky gut" symptoms and food allergies to dairy, sensitivity to gluten and seasonal allergy tantrums. While I haven't noticed a drastic improvement in any of his food allergy symptoms (for which I give enzymes and have him on other probiotics--all of which help LG), I also dose him a good 500-600mg Quercetin daily, a mast cell blocker, per Peter's recommendations, and it has worked phenomenally for ALL his histamine reactions. Tantrums exacerbated by pollen are non existent and when he eats a cookie with some gluten (an occasional treat), if quercetin is ingested with that cookie, his skin stays clear and free from eczema and behavior also stays steady. It's a delicate balancing act, and is always subject to change but it is working for us so far. I hope you find something that works for your son too.
Best,
MKate
MKate, has your son been checked for Celiac Disease? According to a doctor friend of mine, he is exhibiting the symptoms.
DeleteCeliac disease presenting as autism
http://www.ncbi.nlm.nih.gov/pubmed/19564647
Thank you, Peter. I will definitely look into this possibility. We do have my son on a gluten, dairy free diet, though in all honesty, I've let him cheat quite often this spring and summer (ice cream cones!) and give him an enzyme which offsets some of the allergic symptoms, which of course are still happening but less visibly. Time to get back to full on GF. Thankfully this new probiotic regimen has improved his digestion dramatically and I hope to get a full nutritional panel done asap and will discuss it this week with pediatrician. The biggest problem he faces is the apraxia of speech, with the second being sensory issues, and both of which have never been totally eliminated even when we were 100% GF a few months ago. I will continue to read up to see where changes should be made. Thanks again for the link~
DeleteMKate
It would be really helpful if mothers could objectively recall and assess their babies behaviour in the first six months of life..specifically eye tracking. Did babies eyes settle on and track and seek out the mother, did the baby observe mother activities and facial expressions, babies gaze while being breast fed, emotional reciprocity, did the baby relax and snuggle when in mothers arms.
DeleteIn most cases I think aberrations will be evident, even though child might seem connected and happy. This will greatly help in identifying the precise time, possible cause and probable treatment..whether autistic behaviour emerged secondary to some external trigger like gluten allergy..or lactose intolerance or nutritional deficiencies.
Kids in kalahandi and rwanda, hugely emaciated and malnourished are not autistic. So there is more to it than allergies and deficiencies. Malabsorption..why? What is causing detrimental deviations in basic physiological functions.
That does not in any way dilute the importance of treating kids for intolerances, deficiencies, inflammatory diseases. And, encouragingly, as this blog describes, even some of the more complicated problems involved with neurotransmission.
Mate would you kindly say which brand of Quercetin you use kind regards
ReplyDeleteCertainly. I use BulkSupplements quecertin dihydrate, available on amazon. It's an orange powder with a slightly citrusy taste, imo. Works great in OJ. It takes a while to absorb into water so I make up about 600-700mg/10oz water in the AM, and keep in fridge to cut with juice. My son is 3 and takes only sweetened beverages most of the day. Exact dosing I'm not sure of. I give at least 500mg and then more if needed according to behavior, or sign of allergic reaction. There are also quercetin drops by source naturals on amazon that I just purchased for travel, as the powder is quite messy. I have yet to try them though. Quercetin sometimes aggravates my son's yeast overgrowth issues, usually when he eats too much fruit or sugar along with it, so I add in a drop or two of Biocidin in his cup when he starts showing symptoms of overgrowth.
DeleteMkate thank you
DeleteHi Peter and everyone,
ReplyDeleteI've been reading your blog for a while and the research and the discussions you all provide here have been invaluable. I cannot begin to thank you enough.
My son is 4 yrs old and his "symptoms" first emerged when he was about 18 months old. We first noticed a lot of opening and closing of doors, flipping through books, and not responding to his name. I still have a very hard time deciding whether he's a classic or regressive type. He met most milestones on time, including language (borderline delay @ 18 months). He never clearly regressed although we feel he started to disengage from us around 12months.
My son had a lot of food allergies as an infant, starting from 6months. Yet he outgrew them by age 2. He eats a well balanced, varied diet without many restrictions. After he was diagnosed with autism just before he turned 3, the first thing we tried was the GFCF diet with probiotics and multivitamins. The result was undeniable. His BM was normal for the first time in his life and he was making a lot of progress in terms of sociability and language (although we feel his symptoms had already been improving from when he was 2yrs old).
We have tested him for celiac, which was negative, and the most recent allergy testing shows no allergies although he breaks out in hives in face and limbs at times (I have since booked another allergy testing). We have tried various OTC antihistamines that generated no behavioral changes. He does not have aggression, SIB, or intellectual disability. He does not have many stereotypies either. He is a very sociable and loving 4yr old who loves cuddling and playing with others.
We first encountered Dr. Kelly's paper on AMD right after my son was diagnosed and suspected my son may have a mito dysfunction as he has hypotonia and was unusually lethargic. We started a mito cocktail (Mitospectra) about 7months ago and immediately saw his language improve as well as his sociability. We stopped mito during the summer and saw the return of distractability, vocal stimming, rigidity, and visual inspection.
We have tried NAC without success (it made him jittery and generally uncomfortable). Broccoli powder has good effects on him and we are currently trialing biogaia gastrus. He seemed to tolerate it well and we felt he was responding to it positively. I gave him 4-5 tabs a day for 9days when he suddenly developed chills, fever, and subsequent vomiting. The next morning he complained of stomach pain and had another vomit. I have stopped biogaia since the fever developed. I'm wondering if this was too much and if anyone has encountered similar side effects. Just for in case you are reading this @Alli, what kind of sustained effect have you seen for biogaia in your trial so far.
I am also wondering what my next intervention should be. I am considering bumex, carnosine, and ALA.
Sorry, for the long post, but I wanted to give a relatively decent picture of my son's history. Any suggestions would be greatly appreciated.
K.
We all know that probiotics are good bacteria that live in the digestive tract. These good bacteria control the colonies of pathogens and harmful microorganisms that could cause GI issues and other health problems.
ReplyDeleteIt is rather more complicated unfortunately. You will see that some probiotics have a positive effect in some people, while producing negative effects in others.
DeleteThe good news is that sufficient clinical evidence is there to suggest that probiotics could be used for the treatment of allergies.
ReplyDeleteWhether you eat large quantities of fermented foods or you take a good supplement like Probiotic America, chances are that you’ll find relief from the allergy symptoms.
Our child experiences autism "flare ups" but we have found little relief with OTC anti-histamines. After he recently had a few unexplained outbreaks of hives, I requested allergy testing. Total serum IgE came back elevated (128 IU/ml), but specific allergy tests came back negative across the board. Doctors concluded he does not have allergies, but they were not able to explain the elevated IgE aside from throwing out other possible causes (including some other inflammatory condition). I'm at a lost for what to do with this seemingly contradictory information. Do you think it is worth trying a mast cell stabilizer given the elevated total IgE level? Or, should I abandon the allergy theory and explore other potential inflammatory causes?
ReplyDeleteAllergy testing is not regarded as reliable by many clinicians. I would try mast cell stabilizers, to rule this out as the problem. Cromolyn sodium is a good choice.
DeleteIf the flare ups are severe, with self injury, I would try 20-40mg of verapamil during the problem behaviors.
Thank you! We did the allergy testing in hopes of getting a prescription for either Cromolyn Sodium or Verapamil. Will be harder to obtain now with negative test results. I'll probably try Quercetin and shop around for a doctor who might be willing to write a script. Thanks for your advice!
Delete