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Allergies & Autism


Much to my surprise, allergies play a key role in inflaming classic autism.  The allergy that my son has is just a summertime pollen allergy.  The effect is to gradually worsen behavior from late spring / early summer until reverting to “normal” as winter approaches.  The pollen causes so-called “mast cells” in the body to “de-granulate”, this releases histamine and various pro-inflammatory agents (including the cytokine IL-6) into the blood.  This histamine then causes yet further IL-6 to be released downstream.  In a person with autism the IL-6 (and perhaps the histamine) causes an inflammatory reaction in the brain, making every day a bad autism day.

There is a very effective treatment.

The most effective mast cell stabilizer, surprisingly, turns out to be a calcium channel blocker called Verapamil. 40 mg of Verapamil at breakfast should completely reverse the autism flare up (including self-injury or violence taking place); more may be needed by early afternoon.  Another highly effective mast cell stabilizer is the natural flavonoid Quercetin; if you give half a 500mg capsule twice a day combined with the Verapamil you have a potent mast cell stabilizing therapy.  You can also add nasal spray/eye drops from the list below, if needed.  I use Azelastine.

If you want to find out more go to the site index and look up the posts on histamine, verapamil and IL-6.


Other effective mast cell stabilizers are:-
  •        Azelastine (nasal spray and eye drops)
  •        Ketotifen (nasal spray, eye drops and oral)
  •        Rupatadine (oral)
  •        Cromalyn Sodium (oral) 
  •        PEA Palmitoylethanolamide (oral)

Verapamil is a prescription drug, but is by far the most effective therapy for treating autism flare-ups, caused by allergy.  It is also very cheap.  

Regular anti-histamines like Claritin, Xyzal, Ceterizine etc, do help, but only partially.  They cost much more than Verapamil, which is 100 times more effective.


Food Allergy

I presume other types of allergy, like food allergies, may initiate the same mast cell degranulation process.  I cannot tell you if Verapamil will be equally effective in these cases, but it would be easy to test it.

45 comments:

  1. Hello Peter,

    Thank you for all the information provided here, that's really impressive!

    I would like to share my experience with ASD/mast cells/food allergy, which changed my view on autism forever.

    My son was diagnosed with ASD 3 years ago and progressed well on ABA for the next two years, but then developed recurrent, severe mood issues of unusual pattern and regressed slowly in his cognitive abilities. He was suspected of epi, inborn errors of metabolism and a couple of other diagnoses, all of them not explaining his deterioration.

    I found your blog while looking for autism-mast cells info after one open-minded allergologist suggested mast cells degranulation as the underlying problem in my son. At that stage he had been already (and in fact incidentally) diagnosed with food allergy and elimination diet was started along with Valproate due to his abnormal EEG, according to what I found in dr Chez papers. Immediately, the severe depression-like symptoms resolved and never returned (actually we are not sure what was effective, probably both). Then we added Cromolyn, but its effects were not clear until we ran out of it on Monday two weeks ago. And on Tuesday my son developed the same symptoms that ruined his (and ours) daily life so many times before: cold hands, pale skin and crying so inconsolably. He is 6 yo and not enough verbal to tell us what exactly is he feeling, but definitely he was suffering. Having mast cells in mind I decided to give him Dimetindene (the only anti-histamine at my house that day). I felt somewhat crazy attemting to treat the symptoms for we were previously offered neuroleptics with a few drops of the old generation anti-histamine... but it took no more than 10 minutes to stop my son crying and in half an hour he was playing happily with his sister!

    I kept him on anti-histamine until the next packet of Cromolyn arrived (I have to buy it on-line in UK, as it's not available in my country) and repeated the anti-histamine test three more times with the effects always immediate and clear.

    And, I would forget: his agression resolved completely without any ABA programme to reduce this - so called - "challenging behavior"...

    I have some questions to you. I consider introducing the full treatment as recommended in Mast Cell Activation Syndrome/Disorder with H2 blockers as well and possibly other drugs - what do you think about that?

    Verapamil and mast cells - that's something really new for me. Do you think it may increase the mast cell stabilizing effect which - I suspect - we already saw on Cromolyn?

    And my last, very practical question: for several weeks I try to get my son drink some NAC. And he refuses even the smallest amount. Any hint, how to give it to kids? Does Monty like it's taste?

    Once more: I am really impressed by your knowledge and I wish all the best for Monty!

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    1. All very interesting. Thanks for all your background, which I am sure will help other readers.

      The old, first generation, antihistamines freely cross the blood brain barrier (BBB). This is why they make you drowsy; the second generation was developed specifically to minimize drowsiness. Many doctors believe the first generation ones work the best.

      It is not clear to me which mast cells cause the problem in autism. If it is the ones in the brain, then the first generation antihistamines should be the best. These drugs block H1 receptors, but also, to varying degrees, they also stop mast cells from degranulating. It also appears that there may be chain reaction, since histamine can itself trigger further degranulation in other mast cells.

      While H2 receptors should relate to food allergies, since they are found in the intestines, in the brain there are H3 and H4 receptors. Do H1 agonists also have some effect on H3 and H4? It is possible, but we do not know. Or, is it IL6 that actually causes the problem?

      I came across Verapamil following the known channelopathies in autism. It is well known that there is aberrant calcium channel activity in autism, we also know that one known genetic defect linked with autism is associated with the Cav1.2 channel. This channel is blocked by Verapamil. This channel is widely expressed in the brain and the heart. Heart dysfunctions are common in autism and in the extreme case of Cav1.2 dysfunction, called Timothy Syndrome, the heart defects lead to very early death. Cav1.2 is also linked to many kinds of head ache and its activity is temperature sensitive.

      I was not aware that Verapamil is the mast cell stabilizer, when I started using it. It was quick a shock to find a second reason to be using it. Is mast cell degranulation mediated indirectly by the Cav1.2 channel? It appears to be likely; either that, or it is a big coincidence.

      Verapamil is used to treat exercise induced asthma, but by itself is not effective at treating a pollen allergy. So I used conventional drugs plus verapamil. But when it comes to treating the behaviours triggered by the allergy, Verapamil is 100% effective. Perhaps the mast cells in your eyes are not influenced by Verapamil, but other ones are ?

      I would give Verapamil a try. It does depend if you are trying to treat the allergy and/or the autism. If you want to treat both then best to combine Verapamil with Cromolyn.

      Since your son has food allergies, I think trialing the H2 agonists used in mastocytosis is a very logical step.

      Since your son is very young, I would think it best to use the smallest number of drugs that achieve the desired result, as you try new ones and find something effective, drop the least effective of the old ones.

      I mix all my son’s medicines in orange juice and then he drinks it with a straw. NAC is available as a drug called Fluimucil, this come as a tablet that dissolves in water with a fruity taste, some kids love it. I think you can mask the taste of the cheap capsules with juice, or some strong flavouring, or mix in jam or apple sauce. Also, using ABA, you can promise a reward if he drinks the NAC.

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    2. Hello Peter,

      Thank you very much for reply and advice!

      In the meantime abnormal mast cell activation in our son was confirmed by immunologist and he was advised H1 and H2 blockers in addition to his previous treatment.

      Then we experienced Cromolyn delivery delay again, so I trialled a couple of different mast cell targeted treatments for my son. And it turned out that the most effective were not antihistamines. In fact it is Verapamil.

      We have our own scale in which we rate daily our son's symptoms like GI, skin, sleep problems and a couple of other things which I suspect to be important. After starting Verapamil we saw the decrease in this score by 50% in just few days. Never before I experienced such striking and immediate association between medical intervention and the symptoms in my son!

      My husband also rates this scale, while I give the medications to our son, so maybe you can't call it double blind, but we try to be as objective as we can. We don't have a scale for behaviors or mood, but the improvements are also clear for both us and the teachers. That's really shocking. Thank you once more for sharing your experience! I would never find this in PubMed.

      Our son has been on Verapamil for just three weeks, so it's a very short time.

      Apart from what I described before, my son is also on Melatonin, at first given for jet-lag during last winter holidays. The effect was so good for him and clearly exceeded the benefits from additional hour of sleep, that we decided to continue and this also directed me into the problem of oxidative stress in ASD.

      I am concerned about the fact that nobody really knows the long term effect of such treatments, but on the other hand, everybody knows the long term effect of having autism (and possibly epilepsy in
      the future). So thank you also for practical advice with Fluimycil, I started giving it to my son, after having tried it on myself ;-)

      I hope that my previous comment does not seem to criticize ABA. I appreciate ABA and I know that it is very effective. Provided you're fit for learning. Unfortunately, our son's "challenging behaviors" were just the first symptoms of his medical issues, but they were atypical and neglected or misunderstood by many proffesionals we had met. Now I think that in some cases, if you are not skilled in medicine or science, your ASD child may get lost. That is sad.

      So I am very grateful to you for your blog and all that information you provide. The way you found the benefit of TRH for your son is really a masterpiece. This also inspired me much. Now I have some more to study and possibly ask you soon another questions if you don't mind?

      As far as Verapamil is concerned, do you give it to Monty only during pollen season? In our son there are probably many triggers for mast cell activation, not only food allergens (as described in patients with MCAS), so I consider giving him this drug daily.
      And I wonder if Verapamil might have some pleiotropic effect in autism?

      Sorry for that long comment, I just can't put my mind at ease with all that things.




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    3. Thanks for your extensive comment.

      I am glad that Monty is now not the only boy in the world with ASD who takes Verapamil. It is odd that such a simple and inexpensive drug has not been "discovered" for autism until now. I am giving it year round, but increase the dose during the pollen season. Currently he has 40mg three times a day. In the winter I was giving 20mg twice a day. This evening at 7pm we were driving and Monty says "my head hurts", I know exactly what this means. It was not possible to give his 3rd dose till we got home at 7.30pm. He sat waiting in the kitchen and started to cry, within 5 minutes of taking the Verapamil he was entirely back to normal.

      As you noted, it is sad that many children with ASD will be lost, or suffer unnecessarily because nobody knows how to treat them. Indeed they believe there is no treatment.

      My initial reason for giving Verapamil was linked to the aberrant calcium channel signaling noted in autism and not mast cells. The literature also points the way to which channel to block and why. I think calcium channels must play a yet to be discovered role in mast cell degranulation.

      People with autism have excess calcium in their brain and this is clearly not a good thing. Blocking certain calcium channels over the years should lead to less calcium in the brain. So I anticipate a gradual long term neurological benefit from Verapamil. I also expect a lower risk of heart problems later in life. I see Verapamil as win-win.

      It also raises K+ levels, which is another benefit.

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    4. Thanks for reply,

      I had some difficulties with sending my comment yesterday, so if you received three of them, please delete them.

      I continue with Verapamil for my son: 1 mg/kg twice daily.

      My son is not able to say when his head hurts, as Monty told you, but sometimes he looks as if his head is hurting. Antihistamines and Verapamil help then.

      But what surprised me much, is that my son’s GI issues resolved completely on Verapamil. Before he had low grade, irritable bowel-like symptoms since I remember. Other things helped, but partially or for short time.

      I checked my notes again and it seems that behaviorally my son is doing best on Verapamil and NAC (in addition to previous treatments).

      It is intriguing for me, that Monty and my son - the only kids on Verapamil for ASD (?), as you wrote - share the main diagnosis, but at first seem different in many other medical aspects. My son has a history of severe, depression-like mood issues, GI symptoms and epileptiform sleep EEG, as well as several immunological and metabolic abnormalities in lab tests, most of them only slightly abnormal and not fitting into any well-known diagnosis. His cholesterol and thyroid hormones are within normal range.

      Once more I would like to tell you how grateful I am to you for sharing your knowledge and experience. They are extremely helpful and influenced my view on what can and should be done for ASD kids.

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    5. It is all a little strange, since Verapamil does not actually reduce Monty's traditional allergy symptoms, he still needs H1 antihistamine. I assumed that if Verapamil was a potent mast cell stabilizer I would not need the antihistamine. So it is unexpected that your son's GI problems are helped so much.

      I think there is much more involved than we realize, but if it works well we should not worry too much about exactly why it works.

      Since very many kids with ASD have GI issues, Verapamil could be of widespread benefit. My doctor relatives think Verapamil is a very odd choice, but they do not read the underlying science. Also there is a Professor in Tufts University whose only interest is mast cells, I thought of telling him. Generally researchers are not interested in comments from parents.

      Have you tried bumetanide or clonazepam?

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    6. Yes, GI effects are strange also for me and it’s still very short time, but this is what happened: since April we rate his diarrhoea intensity daily, the scale is from 0 to 3 points. The average for the months before we started with verapamil was 1.9 and for three weeks with 40 mg verapamil it is 0.1. Almost everyday he’s been diarrhoea free since then while before it was rather exceptional. It is unexpected for me and I wonder if the underlying problem is the same in other ASD kids with GI issues.

      In the past Kreon helped my son with diarrhoea, but only partially. Now I’ve learned that some doctors give Kreon for diarrhoea in patients with mast cell activation syndrome due to presumed, mast cell associated pancreatic dysfunction. Well, could this be also the mechanism of CM-AT, which I’ve read about on your blog?

      For sure your invention of verapamil (and many other ideas) deserves more publishing. If you talk to the Tufts University Professor and think that the results of my son treatment would be helpful I would be glad to provide the details.

      I have not tried other medications apart from mentioned before yet. I will try for sure. Now I have another question to solve in my son. I reduced the dose of valproate few days ago and then some behavioral problems re-emerged, including aggression. So we increased the dose back, but then I got the information from his teachers that he might have eaten some “forbidden foods” at school. With standard valproate dose and H1-blocker things got to normal. Currently I don’t know if my son benefits so much from valproate or it is just coincidence. If he was seriously exposed to allergens it seems that verapamil was not enough to control all symptoms, as you described.

      Anyway, he is still diarrhoea free with verapamil.

      And these three days with aggressive behaviors clearly showed me of how better my son must feel now, comparing to the time without treatment.

      Valproate is supposed- in short - to “increase GABA” in the brain by many mechanisms probably including blocking sodium channels. I’ve read only briefly about bumetanide, but it seems for me that this drug helps when GABA works paradoxically, so I am not sure what can I expect from bumetanide in my son, providing that “increasing GABA” by valproate helps him?

      Of course I would feel more comfortable with safer drugs than valproate, especially when using many of them. Few months ago I was thinking about memantine as another step, but I am not sure now.

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    7. Thanks for all the information.

      Since GABA is important in your son's case, Bumetanide/Clonazepam are worth a try. The doses needed are safe and side effect free. I did not expect Clonazepam to have an effect, since in theory it does the same thing as Bumetanide, but it did have an effect..

      Any effective drug needs to be safe for long term use, and most "traditional" autism drugs have side effects.

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    8. Hello Peter,

      Your information about direct involvement of aberrant calcium channel signalling in pancreatic function is very interesting. This perfectly explains Verapamil GI effects in my son and also why previous drugs helped him, but only partially. My son is still diarrhoea free and has some other mast cell related symptoms reduced markedly. He is definitely more calm now, which makes a difference in his life. Thanks once more for this!

      It is extremely interesting what you found about allergy associated cognitive impairment and improvement on bumetanide. It indicates some association between allergy and neurotransmission. This is something I suspect in my son with regard to his mood issues and tic-like symptoms. He still experiences them occasionally, but they are slight and not comparable to last year depression-like state. It seems that they usually occur after allergen exposure.

      There is paper by dr Afrin on mast cell activation syndrome, stating that “the most common psychiatric issue acknowledged by MCAS patients is episodic cognitive dysfunction recognized either by the patient (who often terms it “brain fog”) or, sometimes, a close associate. Such dysfunction tends to affect short-term memory and word-finding more so than other functions. Some patients deny specific areas of cognitive dysfunction but complain that it is simply their overwhelming fatigue that causes a global defect in thinking clearly.” It is similar to what I can see.

      I managed to have my son drinking 2x400 mg NAC daily on regular basis, which is the lowest dose I found in papers, there are also much higher doses described. I wonder how you established the best dose for Monty, did you try also higher or lower doses?

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    9. Thank you for these comments.

      I use 600mg NAC tablets. I started with one and gradually increased the dosage as in the Stanford research. At the moment I am using 2 at breakfast, one at lunch and one in the evening. Before I had solved the allergy problem, there was little point giving NAC in the summer.

      The effect does indeed seem to increase with the dosage and also, if the NAC has already oxidized and smells of bad eggs, odd behaviours do indeed return. In my son the effect of smaller dose vs larger dose is very visible, but when I tried 5 or 6 tablets there was no real extra effect. So I think for Monty 3 or 4 tablets is best. There are no visible side effects. In people not in oxidative stress, I think such a dose might produce some other (unwanted) effects. So it might be wise to use the minimum effective dose and not get carried away.

      I think fluimucil is more potent than the NAC sold as a supplement, at least it should be consistent.

      In some other Stanford research, the same doctor who researched NAC, gave very high doses of Pregnenolone. So he is from the "more is better" school of thought. I was inclined to reduce the dose, but when I do, I see signs of old behaviours returning.

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    10. I noticed some hyperactivity in my son after increasing the NAC dose, but it was temporary and probably related to allergy flare, as you describe it in the other post. Thanks for that information, it was very helpful as usual and made me not give up the NAC treatment.

      In the Stanford study, while the majority of children benefited from NAC, less than a half were assessed as ‘much improved’. I wonder how the results would look like if allergic activity had been taken into account.

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    11. Good point. I think very many children with autism are affected by allergies, without their parents realizing the importance. If you just add the kids with asthma to those with GI problems it will be > 50%.

      If you just looked at the ones without an active allergy, the NAC results would look much better. This might well apply to all drugs trials for autism.

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  2. This is an interesting fact on allergy medication. I shall suggest my friend to try Varapamil who is an allergic. He has been on Levoceterizine for long and become resistant to it.

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  3. Agnieszka, you might want to read this document on Medical Comorbidities in Autism, there is a section or two in there that talk about the association between allergy and neurotransmission in some detail, and the relevance for autism

    http://treatingautism.co.uk/resources/research-science/ (top link, the doc can be downloaded as a pdf)

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    1. Thank you for information. I think that the author of this blog cited the document in some earlier post. It’s a good news that there’s a new edition of this publication, very interesting itself and with many recent references.

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  4. I also suggest you check this online publication

    "Central Role of Voltage Gated Calcium Channels and Intercellular Calcium Homeostasis in Autism"

    http://autismcalciumchannelopathy.com/

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  5. Hello, thanks for all your fantastic research... After 2 years of trawling the Internet and talking with functional doctors about my son's autism, I finally hit upon something effective when we trialled a low histamine diet. We saw huge improvement and then made even more progress when I discovered, during a flare up due to the pollen season, that plain old Zyrtec contributed to some wonderful improvements. The histamine autism link for us has been startling and profound. I've ordered some ketotifan online and now, after reading your blog, wonder if I maybe should trial verapamil? Are there any side effects? Is it safe in a young child? - my son is only 5. Our gp yesterday prescribed him montelukast. What are your thoughts on leukotriene agonists? Lots of negative parental reports on the net (but so there is also with antihistamines!)

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    1. Anything that controls the allergies should help. I think the problem is not just the histamine, but all the other pro-inflammatory agents that it stimulates, like IL-6. If montelukast helps the allergy, that is great. You really need to find out what your son is allergic to, then you can figure out how to minimize his exposure to the allergens. Did you visit an allergist?

      Verapamil is not normally given to children. It is usually given to people with high blood pressure.

      It is also prescribed for cluster headaches and bi-polar, so doctors are aware that it affects the brain.

      It all depends how severe your son's autism is, many people diagnosed recently with autism have very mild symptoms. If a child has more severe autism and maybe exhibits self-injury, then the risk of doing nothing is also substantial. You have to balance the risks.

      In my son there have been no side effects of Verapamil and summertime would be pretty awful without it. By which I mean violence, self injury and a terrible time for the whole family.

      Verapamil does at least 3 different things. It is a mast cell stabilizer, it blocks calcium channel Cav1.2 and potassium channel Kv1.3. I do not know which one, is the key function, perhaps all three are.

      There are alternative mast cell stabilizers and there are other things that block KV1.3, e.g. Acacetin. I am very happy with Verapamil and I think easier to access "supplements" like acacetin, that have never been tested like a drug, are potentially more risky.

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    2. My older kid (non ASD) used montelukast for 2,5 years, starting at age 4 or 5 months, for asthma. It was literaly life saving, and she had none of the side effects that we find reported in the web.
      I do consider trying this with my ASD kid but I'm trying to understand its functioning better to make a decision. It does seem to address several issues mentioned in this blog, but for now I feel way over my head and would appreciate any insight on this one.

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    3. Less than 10% of people experience any side effects at all with Montelukast . The drug is FDA approved for use in two year olds.

      Dr Richard Kelley from Johns Hopkins writes about autism with mitochondrial disease (AMD), which he thinks accounts for most cases of regressive autism. He is clever doctor.

      In the following paper he does suggest the use of Montelukast.

      It looks a very safe drug that might indeed have a positive effect in some types of autism.

      My son takes two asthma drugs (Flixotide and Ventolin). In effect, Montelukast would be an alternative to Flixotide. Flixotide is an inhaled steroid, very little enters the blood stream and so there could be no direct effect on autism. Montelukast would seem to cross the blood brain barrier, since it is taken as a tablet and not by inhaler.

      It looks well worth a try.


      Evaluation and Treatment of Patients with Autism and Mitochondrial Disease
      http://www.epidemicanswers.org/wp-content/uploads/2010/05/Dr.-Richard-Kelly-Autism_Mitochondrial_Disease.pdf

      The well-defined role of nutritional factors in modulating the inflammatory response and the shift from animal fats to vegetable-derived fats in western diets are important factors to consider in the cause and treatment of AMD. The increase in the consumption of pro-inflammatory omega-6 fatty acids in infancy and early childhood over the last generation has been particularly striking. The established role of inflammation in causing mitochondrial destabilization [8,9] could explain an increasing incidence of regressive autism in individuals who have otherwise asymptomatic variants of complex I deficiency, which may have specific adaptive function in host defense and cognitive development [10]. In this respect, AMD, which in our experience is the cause of most regressive autism, could be another inflammatory disorder among several that have seen a markedly increased incidence over the last 20 to 30 years: asthma, inflammatory bowel disease, atopic dermatitis, eosinophilic gastroenteritis, and type I diabetes [11]. The recognition of inflammation as an apparently common cause of regression in AMD recommends the use of anti-inflammatory agents, including ibuprofen and leukotriene receptor inhibitors (i.e. montelukast, zafirlukast), to prevent further injury in children with AMD. For example, the recently reported increased risk for post-MMR autistic regression in children given pro-oxidant acetaminophen [12] could also be interpreted as an increased risk for developmental regression in those who were not given ibuprofen. Moreover, the effect of the gradual elimination of aspirin use in children between the 1980s and 1990s following the Reye syndrome epidemic may have contributed to the rise in the incidence of autism, although, epidemiologically, aspirin elimination alone is not likely to be a major factor in the rising incidence of regressive autism.

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    4. This is very encouraging, and searching for neuroinflamation and montelukast we can find very promising publications. But most studies do not address autism, as usual.
      I'm convinced.
      Now to actually get the stuff will be a project in itself.

      Regards,

      J.

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  6. Hi, I see my daughter regressing this spring but she doesn't have any visible pollen allergies ( I do). Could it still be that there is an environmental allergy thats causing this Autism flare up even thougth I dont see any usual signs such as a runny nose or watery eyes? Also Many ppls here refer to verapamil as cheap and accessible but the only sources I am seeing are Canadian Pharmacies online and that too runs to hundreds of dollars. Can someone kindly advise ?

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    1. First try a common antihistamine which is easy to access. Verapamil is a prescription drug and so online pharmacies can charge a huge premium. The real cost of verapamil is about one US dollar a pack. Many people report that zyrtec improves autism in people with no apparent allergy.

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  7. Hi again Peter, I left a comment just a few moments ago asking for information on how you helped relieve your son's allergy symptoms. I have since realised I just had to read more of your blog :) Thank you.

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  8. Hi, I give Montek LC 10mg, to my 18 yr.old son GAURAV regularly. One tablet morning breakfast time and one tablet afternoon at 4 O clock.It makes him more calm and manageable. We also tried Rupatadine (oral)for almost six month with not much benefit.
    thank you

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    1. This comment has been removed by the author.

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    2. Montek is a combination of the H1 antihistamine, Levocetirizine, and Montelukast (trade name Singulair) a leukotriene receptor antagonist. It would be interesting to know which one is giving you the good effect. Maybe it is both, but maybe not.

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  9. My son now 8 was born with a red patch on his hip, docs did biopsy & advised me that it was a solitary mastocytoma & nothing to worry about. My son also had hypotonia at birth. As he grew it was clear that he was developmentally delayed & doctors thought perhaps a genetic disorder. He had GI issues from birth which docs always said were just colic. Age 2 he started to have gran mal seizures, every 2 weeks. He took 2 different aed's which didnt control seizures so I took him off all meds. Changed his diet & GI issues improved. He is now labelled autistic, non verbal. I just heard Agnieszka Wroczyńska speak this weekend at the Treating Autism conference & I am wondering if the mastocytoma, epilepsy & autism are all connected. I dont know where to start. What tests to ask for, even which docs to go to. I am based near London. Can u help me? Thank you.

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    1. There are no easy answers. There are numerous metabolic and genetic disorders that can appear as autism, but often there are visible differences which a doctor should spot. Some metabolic disorders are treatable and some are not. In the US and Canada they are much better at diagnosing these dysfunctions than in the UK. There is a chance your son has one of those potentially diagnosable disorders, but he may just have idiopathic autism, of unknown cause.

      There are some drug therapies for idiopathic autism, and you heard about some of them at that conference, but they are not yet approved therapies that your GP will know about.

      Agnieszka has said she is happy to be contacted by parents and she is interested in mast cell issues, so you could contact her. Her email was in her presentation, which I believe you can get from Treating Autism. As regards obtaining the drugs used in these therapies, you may struggle. Some people buy from overseas online pharmacies, some people buy them in countries like Spain, where they are not so fussy about if you have a prescription. Some readers have an understanding GP, but they do not live in the UK.

      Many of the treatable metabolic dysfunctions are in this post:-

      http://epiphanyasd.blogspot.com/p/treatable-idmr-and-some.html

      The doctors in Vancouver do offer whole genome sequencing, which you have to pay for. There is no guarantee that it will reveal anything useful.

      So if you want to take things further, you will end up treating your son yourself.

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  10. Peter, are you able to provide more information about doctor in Vancouver who does whole genome sequuencing ?

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    1. If you look on the treatable ID website

      http://www.treatable-id.org/page89/about.html

      you will see the doctors in Vancouver who focus on this.

      Just google their names and you will easily find their contact details. Then just write to one of them.

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  11. Hi Peter
    Just wondering if you have had reports about fexofenadine? We have had a very positive reaction on both the allergy and the autism - much less hyperactivity, insomnia, handflapping, repeating old dialogue, anxiety, sneezing, puffy eyes, rashes ... this is a much clearer result than we have had with any other anti-histamine. Any idea why this might be? It seems to be great at reducing inflammation? Maybe there are other reports of this drug in autistic patients?
    thanks for all your work and sharing
    Jim

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    1. Jim, many people with autism respond to H1 antihistamines, it may be due to their mast cell stabilizing properties. There are more potent mast cell stabilizers and these might work even better, but they are prescription drugs. In some people Zyrec is very helpful, it seems to vary by person.

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  12. Peter, Our 5 year old son Neil who is on autism spectrum recently had an endoscopy. Biopsy results showed eosinophil count of 16 for one of the biopsies. He was already on a very restricted diet at the time of biopsy. Doctor suspects EoE or allergic esophagitis.
    Neil was on GFCF and soy free diet since July 2015. In December 2015 we moved him to SCD. We added camel milk in Feb 2016 due to weak muscle tone.

    Slowly since December 2015 Neil developed regurgitation with certain food items. Regurgitation increased over time in intensity and also with the number of food items. By May 2016 Neil had severe regurgitation almost immediately with most food items and we were forced to constrain his diet to easily digestible age-old Indian cure of rice and lentil mix to ease regurgitation (primarily beef, chicken, fish, some millets and vegetables were removed). Significant improvement in regurgitation as a result of diet change indicated removal of some food allergen. Significant improvement in behaviour was observed by everyone and aggressive behaviour completely stopped. ABA therapist also recorded significant improvement after shifting to rice and lentil based diet. He was extremely happy for the first two days. First day he jumped around the house for 2-3 hours. Second day spoke continuously for 2-3 hours. He repeated all the questions we had asked him over several months and answered them and after repeating the question. In several of these instances we thought he was not paying attention when we originally asked question.

    After the diet change he has been very happy but has started leaving food items that he previously liked one by one. We did not press because we thought it was because he was feeling uncomfortable with those items. We had stopped most food items he regurgitated with before the endoscopy. Regurgitation is almost immediately after eating offending food items. Also number of food items he is regurgitating with keeps increasing over time. He seems to start regurgitating to all items after some time.

    Now he has restricted his diet to camel milk porridge made with sprouted buckwheat flour over the last 6 weeks.

    We live in London, UK and saw an allergist at Guys and St Thomas hospital in London who confirmed among others allergy to lentils.

    We have started him on 1/4 tablet of ketotifen today. His total ige count was 890 in blood test just before endoscopy and he was severely allergic to everything in his environment including pollens and dust mites.

    He is reacting very strongly to supplements and essential oils. We massaged bottom of feat with frankincense oil and he cried pretty much the whole night. He similarly reacted extremely strongly to Piritone and we had to discontinue it. Piritone and frankincense oil are known to cross blood brain barrier. He is tolerating other anti-allergic that are not known to cross blood brain barrier. He displays very strong behaviour problems with some food that are negative on ige blood test.

    We are seeing gastroenterologist Dr John fell at Bupa Cromwell hospital and allergist Dr George du Toit at Guys and St Thomas.

    Current treatment plan is to wait to see if ppi (omeprazole) had as effect on eosinophil count and if Ketotifen has an effect on non-ige mediated food allergies. We are also trying to start neuroprotek.

    In extended family we have some history of mast cell sensitivities.

    He had mild allergy to only eggs and nuts 9 months back in ige test. Recent blood test show 890 total ige count and severe allergies to pretty much everything in his environment. Everything seems to be going through the gut to the blood and he is not able to tolerate anything that is known to permeate blood brain barrier.
    Peter, please let us know if you have any suggestions

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    1. People with autism and allergies seem to respond remarkably well to verapamil, there is a lot written about it on this blog. Use the "Index by subject" tab at the top of the blog page.

      Another rather surprising therapy is to use a specific probiotic bacteria to dampen the immune system and so avoid the allergic reactions. Look at the posts on Biogaia probiotics. It seems that people with mast cell issues respond to this product.

      Neuroprotek is expensive and for us had no impact. Verapamil and Biogaia work from the first dose. You would need a prescription for Verapamil but not for Biogaia.

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    2. Help Rahul,
      Did you see any benefit from Ketotife

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  13. Thanks. We have already started biogaia based on your post. Our allergist was not familiar with verapamil and refused to prescribe.

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  14. Also Neil was regularly having other probiotic and kimchi regularly over the last 6 months. He is also regularly having digestive enzymes for several months now.

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    1. You might want to write to Agnieszka, who wrote the guest post about verapamil (look for the link on the right side at the top of the blog page). She has tried many of these things on her son and might well have some good ideas for you, Her email is in her guest post. It seems that each probiotic is different.

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    2. Thanks for your help. As suggested I will write to Agirszka

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  15. We have been using Sytrinol 150mg twice a day, since December 2015 and have had almost no allergy issues this spring or summer. The only time that we have had issues has been on a recent vacation when I was a bit haphazard with giving her meds and supplements and missed a few doses. So, I would go as far as to say that, while on regular dosing, my daughter has been 100% allergy issues free.

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  16. Thank you for all your research. I recently started to suspect that my son was suffering from some kind of allergy from his symptoms: dark circles around the eyes, sniffly nose, itchy eyes and flare in temper and aggressive behaviour. Your blog confirmed this and, looking back (I keep treatment journals for my son) I realised that the behaviour would get worse in early summer and around December. He is in one of these periods now and it may be the reason why NAC didn't work with him, as he took it for the last month? I gave him Clarityn this morning and he was fine and happy, but had to give him another 10mg at 1pm, as the "violent talk" started again and the dark circles reappeared. He is only seven, though and he's not supposed to take so much Clarityn, according to the instructions. I read about Verapamil, but I'm scared of the side effects and there is no way my GP will agree to prescribe it. Are allergies not a sign of overloaded liver? I know his liver is overloaded and I plan to give him Bioray Focus to help detox over the holiday. I suspect he has some food allergies too, but I don't know what. Inflammation is also another factor: he was forceps injured at birth and the cranio-sacral sessions have helped a lot with his hyperactivity. There are so many pieces of this crazy puzzle.

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    Replies
    1. Verapamil is an extremely well understood drug and for the great majority of people at low doses has no side effects at all. It has numerous potential benefits in autism other than allergy related effects, but I agree that your GP is highly unlikely to help you.

      Allergies are an indication of an over-activated immune system, which is a feature of autism. To check liver function you can measure enzymes ALT and AST, which is a cheap test your GP might be willing to do.

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  17. Well, I have ordered Verapamil online anyway, about £20, so not that bad. In the meantime I have given my son Clarityn in the morning and Ketotifan after lunch for the last two days and it seems to work...I can clearly see when the effect wears off my son starts talking rubbish again, about violence, distruction and so on, it's always the same subject when he gets irritated and he is more likely to hit out. So he does have allergies after all, who would have thought...Over the holidays I want to give him Bioray LiverLife again, this time on a full stomach to see if he can tolerate better; it's a natural liver detox formula and I'll try to cope with the die-off symptoms, as there is no school. My hope is that once his liver is "unclogged" (forgive my "scientific jargon") his immune system might stop over-reacting to stuff. I don't want to use drugs if I can help it, but this is a very useful experiment, so thanks for making me learn something new. Giovanna.

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  18. Would it be wise to try aan immunotherapie (hyposensitization) against pollenallergy for a young child who is on the spectrum (mild case) with flare ups in summertime? Thank you!

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