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Wednesday, 13 September 2017

Verapamil still working after 3+ years, for SIB in Autism


There are numerous ideas about how to treat self injurious behavior (SIB) associated with autism. ARI (the former home of Defeat Autism Now) have just had their take on the subject published.
In this blog we have seen that Tyler has developed a BCAA (branch chained amino acid) therapy, based on the idea of Acute Tryptophan Depletion, to control his son’s type of self injury.
The silver bullet for my son’s summer time raging and self-injury continues to be the L-type calcium channel blocker Verapamil.
I think many people will be skeptical of both BCAAs and Verapamil, which is entirely understandable. Unlike other aspects of autism, which are hard to measure, self-injury is really easy to measure and so you know when you have cracked the problem; what other people think tends not to matter.  
Now that Monty, aged 14 with ASD, has moved to secondary/high school the routine has changed a little and his assistant forgets to give him his midday dose of verapamil.
On the days she forgets, between 4.00pm and 4.30pm Monty starts to punch himself. On all other days and during the entire summer there has been no sign of self injury.
So when asked is it really necessary Monty keeps taking his pills, my answer remains yes.  In the case of verapamil I now have further evidence that after more than three years of use, his pollen allergy driven self injury continues to be entirely controllable using this therapy.
I do not know what ARI have put forward in their book. If your child has SIB that does not respond to whatever therapies you have tried, it might well be a helpful read. 

Other readers have noted GI and behavioral improvement from Verapamil and our doctor reader Agnieszka did try and collect case reports, but it seems parents are more interested in reading reports than writing them.
           







61 comments:

  1. Peter,

    We have received all the test results for baby shield test , urine + blood (life cell) and everything seems perfect. Though the test is quite thorough....they even check for traces of mct oil and valproate and benzodiazepines, they did not test for neurotransmitters. We even managed to get a partial vision test done as my son would only speak out only one letter ir number rather than in sequence which we do not know was problem with vision or inattention (second option more likely). Jury is still out on tests requiring sedation MRI, EEG and BERA. I think we will have to do some more blood letting as I am keen to test for certain hormones and probably b12 levels.

    And about SIB, we have a new ten year old boy at our therapy center, beautiful as an english rose with an equally beautiful mother. Invariably, after an hour or two into the sessions he would start punching himself and everybody was distraught. I asked the mother to just try feeding him something when SIB starts and it worked, either because of normalization of energy levels or more likely distraction.

    Although I am sure you must have tried it have you ever made Monty, the piano man, sniff some nice fragrance at that troubling mmoment...works for some.

    Wishes

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    1. Kritika, SIB is a complex subject. It can just be a loss of control when doing a difficult task, which is why Monty went a little wild during his homework. So it is SIB, but it is manageable. With Verapamil, which for us has no side effects, we avoid this SIB and the anxiety that builds up to it.

      But severe SIB is something different and most people would just want to get out of the way to protect themselves; we had this on a regular basis for six months, about 6 years ago. This is what prompted by search for an effective therapy. After a while SIB just becomes a habit, an acquired behavior, which is why you need to stop it one way or another. I have a university friend whose nephew ended up being put in an institution, because his violence could not be controlled at home. They live in fear of the day he may be sent back home.

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    2. Peter,

      There always is a reason behind behaviours. Its only that SIB following an immediate, known trigger like frustation on denial or being compelled to do something the child does not want to do makes us, as parents, feel more in control whereas violence caused by deeper emotional or physical issues, which are not evident to us leaves us scared and scarred.

      Yes its complex and its sad. What we do not understand scares us.

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    3. Been dealing with SIB almost from the beginning though it has been reduced a bunch over time.

      There is quite a lot of research correlating SIB and aggresin and most professionals likely believe high dose antipsychotics are the only answer besides restraints and segregation. I don't believe this to be true from experience.

      As far as supplements go in dealing with SIB and aggression, the top 3 I would recommend are:

      NAC
      L-Aspartic Acid
      BCAAS
      Biogaia Gastrus + Soluble fiber

      In order of trialing for someone new to this, I would do the Biogaia Gasytus first because it's two strains do two important things: the protectis strain will help reduce intestinal inflammation and help maintain gut integrity. The soluble fiber which for us is a mix of potato starch, barley flour, and inulin, is a basic intervention to keep the gut healthy for everyone. This is tour first line of defense on managing systemic inflammation which tends to track with brain inflammation as well.

      The next intervention I would try is NAC. Some people do not respond well to it in high doses, likely because it activates mglur1 and mglur5 receptors which cause subcortical problems, especially in the striatum. I would stuck with it for a couple weeks before deciding one way or the other if initial results are negative.

      Next I would try L-Aspartic Acid which I believe helps block excessive mu-opioid receptor activity from excessive endorphins in autism. Even though this is a 4 decade or so observation, some extreme autism behaviors are similar to those of opioid addicts. Excessive opioid signalling will give the amygdala major problems, not to mention over stimulation will compromise the immune system.

      Last on the list is BCAA therapy because it is more a band-aid to upstream problems the other three aforementioned interventions are intended to address. It is complex and is a hack to deal with multiple problems severe autism which is high levels of quinolinate and dopamine in the brain, both of which promote excitotoxicity in excess amounts. Ideally, you would just want the activated microglia to subside to a quescient state and catecholamines to normalize with some other intervention, but there are no great solutions to those problems yet, hence the band-aid approach which for my son has been a very good band-aid that I hopefully won't have to use in the future if good solutions transpire which do not have side-effects that are worse than the problem being solved.

      Those of course are not the only interventions we employ for autism, but those are what I would recommend to anyone dealing with SIB and aggression.

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    4. Trileptal was the only thing that eliminated SIB in my son. It also stabilized his EEG. Inulin fiber (FiberChoice gummies) helped too. Gut somehow is related to SIBs. Sometimes a probiotic on empty stomach helps. Tried BCAA - doesn't do anything, just raises his ammonia level, which is already high. A more important thing is to avoid things that trigger SIB, Phosphatidylserine, for example,

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    5. Tyler,Iam concerned about the fact that BCAAS could be raising ammonia levels in my son, specialy because he is taking valproate that also could be raising them. For how long do you think my son should continue taking BCAAS?. For me BCAAS have been much more than a band-aid for my son´s dopamine issues and the weanning of risperidone. Valentina

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    6. Valentine, BCAA's are essential amino acids and found in copious amounts in all animal protein and are significantly high in dairy products. Of course, almost all foods high in BCAA's are high in aromatic amino acids as well which includes tyrosine, phenylalanine, and tryptophan, all or some of the amino acids you want to restrict with BCAA's. The odds are your son had plenty of BCAA's in his diet prior to this therapy.

      Now, some athletes/bodybuilders these days will take massive amounts of BCAA's with a very high leucine to valine/isoleucine ratio to upregulate mTOR. However, their utility is controversial for this use as many people believe BCAA supplements for building muscle to be a waste of money, relative to just eating a nice big juicy steak (high in BCAA's of course).

      Unless I see evidence to the contrary, taking BCAA's a half hour before a meal to keep blood levels high enough to restrict the rush of insulin you get after a standard meal which causes the BCAA's already in the blood to be dumped into muscle tissue causing a flood of aromatic amino acids to get into the brain which activate hedonic responses in the brain (one reason we get pleasure from eating food), is better than the alternative for our children.

      Without that band-aid, your will be bleeding excess dopamine and quinolinate precursors into the brain which in some people is going to make their behaviors much worse. Last but not least, there are no studies I am aware of that suggest there are positive permanent changes from long-term use of this therapy that would warrant stopping the therapy. As I said before, when I stop it for 3-4 days with my son, things start to get very difficult for us (and him), though I think some of the other upstream therapies I have implemented since then have improved the baseline of behaviors if we were to stop BCAA's ourselves.

      As a parent, it is very frustrating either way of course.

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    7. Ok Tyler,have been 8 long months, but as said before, it was worth it. I have clear that in my son´s case,the battle against dopamine will continue for ever, and BCAAS have been my best weapon. So, I will continue until something better appears. Please, let me know if this happens someday.Valentina

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  2. Tyler,

    Would you mind sharing more about your soluble fiber mix? Are they equal amounts of each, how much and how do you administer?

    Jolene

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    1. I have shared the soluble fiber mix I use here on this blog before, but the important thing us to get enough soluble fiber per day. Certain types of insoluble fiber also seem to be important for gut health in complex and positive ways, but soluble fiber is more important and practical to supplement.

      The mix itself us 50% Bob's Red Mill Uncooked Potato Starch and 50% Bob's Red Mill Barley Flour. Mixed together and shaken up in a big container will yield a mixture that won't clump up in drinks like potato starch on its own will, and won't have the graininess that barley flour has on its own in a drink. You can also of course easily mix it into peanut butter without changing the color or texture too much. If the peanut butter gets too dry, add in some olive oil.

      The inulin is stickier and can be mixed in with the rest, but I usually mix it in separately with whatever I am adding the potato starch/barley flour mix to.

      Potato starch is resistant starch and will ferment into SCFA's in the large intestine. SCFA's are essential in giving the intestinal epithelium the energy to repair itself, especially after exposure to bike acid which is released by the gall bladder to break down complex fats. This is why a high fat diet is bad news unless you also have adequate fiber so that the gut can repair itself. Fasting of course can help too.

      The barley flour is high in a prebiotic called beta-glucans which studies have shown is great for maintaining blood sugar levels in an acceptable range. In autism, wild swings in blood sugar tend to mean wold swings in behavior too.

      Inulin is another prebiotic that helps keep the intestinal microbiota happy is a long-chain sugar/polysaccharide that won't get absorbed in the small intestine but will be fermented into SCFA's in the large intestine. I don't need to explain its utility as you can Google any number of acceptable answers yourself since it is the most popular prebiotic today.

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    2. Peter,

      I am going to order super sprouts...wanted to try the pill form as its going to be more convenient...do you have any idea if its as effective as the powdered form. Its expensive so only want to do tried and tested things.

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    3. The pill form should have same effect. Broccoli seems to work well for some, but not others. You have to try it to find out.

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    4. Thank you for your response, Tyler!

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  3. Peter

    It seems that you have not done a lot of testing on Monty, not even some of the basic tests not requiring blood draws, like an MRI or an EEG and I was just curious as to why someone like you who advocates a science based approach to treatment would choose not investigate possible dysfunctions. Is it an emptional/psychological barrier, a fear of what you would find, or you feel its an exercise in futility. I am sure you have no dearth of resources like most of us.

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    1. Kritika, some cheap blood tests are quite likely to be useful and you just need a local lab. More complex tests like an MRI or even just an EEG, can be useful and if offered should be done. Genetic testing in a few percent of cases will tell you something actionable, in a few more percent something perhaps important but with no therapy and for most people just adds confusion.

      My approach involving a degree of experimentation has been very effective, and so I maintain the same approach. I do see other people's genome and exome sequencing and where it takes them.

      My ideas in the blog are more for the big picture, so if all people diagnosed in say Denmark, a rich country with excellent universal healthcare, had MRI/EEG/WGS/WES plus a sample of spinal fluid taken after an autism diagnosis, not only would we collect a great deal of useful data, but you would spot a meaningful number of treatable conditions. 10% of a thousand people is lot of people. The parents would just get the therapies (if any), they would not have to learn about neuroscience, genetics and pharmacy.

      For the individual, do you pay one of two monthly salaries for some tests that in 90% of cases will not improve outcome?

      Do you want to know if your child has a Chiari brain malformation?

      I remember reading an article about what tests doctors would do on themselves. It was a very short list. For males, even regular PSA tests do not increase life expectancy. Basic things like blood pressure, blood sugar, cholesterol do matter.

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  4. With regard to antipsychotics and restraint mentioned by Tyler as the mainstream way to deal with SIBs, there is a paper published in the very mainstream Pediatrics last year:

    "Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care".
    https://www.ncbi.nlm.nih.gov/pubmed/26908469

    The idea of the paper: "The practice pathway is designed to help the PCP generate individualized treatment plans based on contributing factors identified in each patient." It includes SIBs/aggression management.

    The guidelines state clearly:
    "Atypical neuroleptics have become widely used in patients with ASD but carry a significant risk of metabolic and neurologic adverse events. These concerns mandate consideration of lower-risk interventions, even for severe I/PB, targeting other factors, such as medical problems or communication challenges that have been identified as potentially contributory to I/PB in the individual patient." Also: "whenever possible, avoid physical restraint".

    According to this practice pathway, NAC or clonidine should be considered for "problem behaviors" in most cases, while antipsychotics should be used only in exceptionally severe situations.
    I am pretty sure that none of pediatricians or PCPs in my country read this paper, so maybe these recommendations should begin with the words "in the ideal world..." as Peter sometimes writes in comments here... Anyway I think it's good to be aware that such document exists and even print it for an appointment if SIBs are to be discussed.

    Thanks to all who shared their Verapamil experience. The data is still very limited and I am aware of not many more than 10 people who used this drug for autism. Of them minority has been successfully using it long term without adverse effects. In some children irritability and/or constipation were reported while on verapamil, the latter in children with a history of previous issues. "Emotional control" across different levels of functioning could be the common positive effect of verapamil, but this may be too early conclusion with this n>1 sample.

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  5. Good morning everyone,

    Happy Friday!

    I just saw this abstract and wanted to share as it provides yet another piece of the puzzle:

    SHANK3 Regulates Intestinal Barrier Function Through Modulating ZO-1 Expression Through the PKCε-dependent Pathway

    http://journals.lww.com/ibdjournal/Abstract/2017/10000/SHANK3_Regulates_Intestinal_Barrier_Function.8.aspx

    This may help to explain, at least in some cases of ASD, the issues with both the gut and the brain.

    On another note, for those of you that are interested, the "social" improvements have been sustained in my daughter on Kudzu. No speech or cognitive improvement, but she has definitely become more caring with us, and apparently more interactive at school, and it was quite immediate. I'm at 300mg X 2, started at 150mg X 2.

    AJ

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    1. AJ, very interesting about the Kudzu. You have the same response as Jolene.

      Did you ever try any other phytoestrogens like EGCG (the one in green tea)?

      Since doubling the dose did the effect grow?

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    2. Hi Peter,

      I would have to say, that Kudzu is the intervention with the most obvious impact I have used. I had bought it, but was a little apprehensive about starting it because of the phytoestrogen aspect.

      When I saw Jolene's note, I thought it would be worth a try, and the difference was so noticeable, not only did we notice it, but so did school and our BT and speech therapists.

      I had tried ECGC for a while but saw no difference so stopped using it. I do believe that the impact improved with the higher dosage, but it wasn't linear, so by increasing the dose by 100%, the impact we saw was maybe 20%. It was that first 150mg X 2 where we saw the biggest impact.

      Hopefully there will be some improvement in the long term on cognition and speech, but the improvement in eye contact and desire for more interpersonal interaction was really noticeable and it was immediate just like Jolene (maybe not as much Jolene though, but I am at only half the dose).

      I do want to try an increase in dose to Jolene's level soon (600mg X 2) to see if we notice any additional benefit that is worth the increased dose.

      We are also using intranasal oxytocin, which we started a while before the Kudzu, and that offered a very mild improvement, and certainly far less impactful than Kudzu.

      On a side note, Peter do you (or anyone who knows) have any thoughts on Casomorphin / Gliadorphin testing via urine? We will be seeing my daughter's integrative medicine doctor soon and will run OAT and heavy metal testing, but I saw the Casomorphin / Gliadorphin test on Great Plains lab's site and wondered if we should go for this as well. any insights on the potential value of this test would be most helpful. If we're going to collect the urine (god only knows how we'll do this part!) I'm wondering if maybe we should run more than just OAT / heavy metals at the same time.

      Thanks very much!

      AJ

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    3. AJ,

      I've been thinking about your daughter and the results of the Kudzu. Thanks for the update! I'm so glad it's working for you guys.

      Peter and community, I am wanting to get some tests done on my son, and I'm looking for suggestions. I want a basic blood panel, FRA antibody, allergy, and MTHFR (which I have). Am I missing anything? Is there a specific mitochondrial test I should ask about?

      Have a great Friday!

      Jolene

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    4. I would like to try Kudzu, is there a brand that you both use? you can email me privately nieszka_m@hotmail.com, thanks in advance!

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    5. Jolene, there are very many possible tests. I would check basic things like thyroid function and markers for inflammation (CRP and cytokines like IL-6 if this possible; cholesterol etc). Electrolytes are good to know.

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    6. Hi Nieszka, the Kudzu I use is from Vitacost. The bottle says it's 1,200 mgs, but as I learned, that's for 2 capsules.

      Have a wonderful evening!

      Aj

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    7. AJ, I am a bit sceptical of some of these unusual tests. It is great that Kudzu is so beneficial, hopefully the effect will be maintained in the coming months. Did you try Tyler's idea of agmatine?

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  6. Peter and Agnieszka, I am so sorry - have had so much going on in the last year with our farm planning and construction, I completely forgot to submit a case history. I have contacted agnieszka privately about reactions I was seeing with my son while he was on verapamil - out of confusion as to what was causing what, I stopped verapamil in January. Agnieszka, if you think a case history on my son would be useful, I will be more than happy to provide.

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    Replies
    1. Tanya, I have only few full reports, so for sure any new is very welcome.

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  7. Hello Peter,

    Second visit to neurologist...such a sweet person but she asked me to steer clear of two therapies, stem cell and HBOT and without me even asking.

    She also said that she will write whatever tests come to my mind....just so as to get maximum information, to move ahead with clarity and in lesser probability, find out something which might really pin it. MRI and EEG she felt were really important as they could lead to some treatable abnormalities and other lab works of limited use. She also advised us to get a chromosomal microarray done. As expected our blood works had yielded nothing. She on my asking wrote us a thyroid dysfunction test.

    Finally, she said that you are free to try out all supplements but keep continuing your therapies rigorously. And she also acknowledged that in 20 years of her career, she is seeing a spurt in autism cases only in recent years which cannot be attributed to better diagnostic alone. I feel its either mod ern medicine with its system of obstetrics and mad vaccination routine or a giant experiment carried out by USA to study functioning of the human brain.

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    1. Among all tests we have done, EEG was the most important. MRI is more for comfort, to check if there are tumors or lesions. If MRI is normal, it doesn't mean that the brain is normal. If it is abnormal, the choices are limited to surgery to remove tumors/lesions. We have don chromosomal microarray. It will check for mutations known to cause developmental delays. But, identifying mutations that are relevant to autism is still a growing field. So, microarray test is limited to what the test lab thinks is relevant. I found that 23&me is more useful. We have done whole exome sequencing too, but post-processing is costly: you need to hire a bioinformatician to read the file, compare your sequences against RSID's in clinvar, report all known mutations and rank them by clinical significance.

      HBOT is often considered a quack treatment. But, hospitals have HBOT chambers. FDA approved their use for such conditions as acute traumatic ischemia, anemia, and radiation effects. Most patients who use HBOT (and it is covered by insurance) are cancer patients undergoing radiation therapy to remove brain tumors and diabetes patients to heal woonds. Radiation therapy leaves scars in brain tissue, which cause neurological disorders. HBOT helps to heal those. So, the science behind HBOT and its positive effect is there. Mainstream doctors who immediately dismiss HBOT are ignorant, and if you follow their advice, you will be on the same path that led your child to autism in the first place (exuberant vaccination, advising to use Tylenol, using suction caps to deliver newborns, etc)

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    2. Anonymous,

      My sons neurologist felt that HBOT could be risky...she might have come across cases where it did more harm than good. EEG she thought to be extremely useful as it might direct you as to which drugs/supplements might help and MRI could detect certain structural malformations which could be treatable.

      But she was very sombre about the issue of vaccination and did not dismiss it...some senior doctors...she must be in her fifties, know deep inside their heart that modern, imported medical practises have hurt us. They will not say so as most people,even our Peter thinks that you can evoke vaccinations as an autism cause only at the risk of not being taken seriously and losing respectability.

      Our main concern right now is to how to get an EEG done which was to be done under combination sedation to induce sleep including melatonin. My son and I seem to be allergic to it so that might have to be worked out.

      The Queen says ' my dear, in our country you have to run as fast as you can to stay in the same place. If you wish to go somewhere, you have to run twice as fast'.

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    3. Kritika, there are as many opinions as there doctors out there. For instance, in our local children hospital, one neurologist likes to prescribe Keppra to autistic kids, the other Trileptal, and 3rd would call the other two crazy for prescribing anti-seizure meds to kids without seizures. And all 3 are with 30+ years of experience. The same with psychiatrists: one would prescribe SSRI's to autistic kids, the other would criticize the first and himself prescribe stimulants without even asking about EEG (stimulants can cause seizures). What I have learned about medical profession in USA is that you have to decide yourself what treatment you want and you can always find a doctor who would support you in your decision. If you want to steer away from a certain treatment, you can always find a doctor who will re-enforce your opinion by criticizing that treatment. There are no wrong or right treatments and opininions.

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    4. You can indeed find evidence for almost anything, here a case study showing Keppra (Levetiracetam) actually causing autism.

      Levetiracetam-induced reversible autistic regression.
      https://www.ncbi.nlm.nih.gov/pubmed/22704022

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    5. Dear Anonymous,

      I do not know your background, professional or otherwise. We are middle class, educated, service class parents in a developing country, much better than most in my country but its not easy at all. And with my husband being a low energy person (actually I am being kind to him, he seems to be on the spectrum honestly), I am pretty much on my own trying to help my son to the best of my abilities. I am not engaging in self pity here but describing the human limitations in seeking out and implementing therapies and treatments. I feel most of us are in a similar situation. Its not a question of finding a doctor who reinforces ones opinion. Its a question of first making an informed opinion and doctors whom we consult, web based information and kind, intelligent parents like you help us form one. This was the first neurologist we saw and I could make out that she will help us with only those treatments which are at present medically acceptable for a condition. She thought histamine is a word which should not be mentioned in a neurologist's clinic and folinic acid can never have a side effect as its a water soluble vitamin and any excess is passed out with urine. Same holds true for our beloved special educators and behavioural therapist. You mention RDI and they think its something to do with the finance ministry. But we have to work with these people...I do not have full faith in their abilities and knowledge but I try to keep faith in their intentions.

      I have been looking up information on HBOT for autism in India and reports are extremely extremely ambiguous. Apollo hospital in Delhi, who do offer this therapy for autism, do not even have someone who will follow up through the entire 40 sessions. So my opinion about HBOT is still a fledgling.

      Its scary that we seem to know more than medical professionals and teachers in whom we have entrusted the health and development/education of our kids. I am not sure if it is such a good thing.

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    6. Kritika, what type of EEG is it - one hour, over-night or longer?
      In my daughters case she actually fell asleep 10 minutes prior to the EEG (she is small, so she sleeps an hour in the middle of the day). We didn't know what to do, so we brought her and the whole stroller she was lying in into the examination room. The nurse kept the room dark and started to put those electrodes on to her head and since she was in that first deep sleep state she didn't wake up.
      As I had begged for an over-night EEG and only got an 1-hour one we were extremely lucky getting 50 minutes of sleep-EEG. And yes, it showed epileptiform activity. This, I think, was a huge door-opener for us with the neurologist.
      Not sure you would succeed with the same, but anyway. Good luck!

      /Ling

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    7. Hello Ling,

      Epileptiform activity or abnormal discharges during sleep is what we are looking for....sometimes inconsistency in cognition and behaviour, the huge variability I see in my son could be caused by this. Its supposed to be a short, thirty to fifty minutes test but he is got to be sleeping. With melatonin ruled out which was one of the three combo drug,to be given for sleep induction, we are banking on Gods mercy and the power of rest of the two drugs, phenergam and picrolyte (not sure of spelling) to get him sleeping, the beauty that he is.

      Delete
    8. Dear Peter, Tyler and all,
      What about reflex mask for increasing blood flow and oxygen in brain? It seems IAHP (https://iahp.org/ ) follows the technique for a long time and they say it gives good result.

      Delete
    9. Kritika,
      Read the books 'what to do about your brain injured child' and 'How to teach your baby to read'. IAHP conducts 'What to do about your brain injured child course' and I personally met a mother who recommended it to me. Her son was severely learning disabled till 10 years old and overcame that disability after doing their intensive programme. Check their website. They even conduct the course in Delhi. You can contact them and ask for reviews from Indian parents. The drawback is it is really really expensive. They charge less in USA and Europe than in India. I don't know why. There are many web based positive reviews. My son and daughter in law plan to attend it in Philadelphia in the near future. They live in London.

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    10. Salempeacock, IAHP looks rather cult-like to me. I do think that some brain damage should respond to increased blood flow, but that is well within the bounds of current medical science. Too much oxygen can actually be damaging in some cases.

      There is no single wonder cure for all disorders, but in many cases there are partially effective therapies.

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    11. Salempeacock,

      Thanks for that information. I had read earlier about this therapy where kids are made to go through stages of growth as they do in real life through posturing under a premise that even passively held physical positions will result in neurological development coiniciding with each stage...hence the brain will develop through steps it might have missed earlier. It does seem plausible and I will definitely go through their books and explore it further.

      Thanks

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    12. Kritika,

      Good luck with your son's testing. In my son even short sleep EEG was enough to diagnose some epileptiform activity.
      MRI rarely shows something significant, but I once wrote a comment here about twins from my country labelled with autism as toddlers and only several years later diagnosed with Chiari malformation on MRI. Both reached some developmental milestones overnight after minimally invasive surgery, which would not happen without proper diagnostics.
      You may ask if they have MRI spectroscopy in your hospital. This can be used during typical MRI examination to check for disorders of creatine metabolism (e.g. GAMT/AGAT), which can manifest as autism and can be treatable.

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  8. Peter,

    Thank you for giving me more ideas on tests. I'm so grateful to you and the community on this blog for sharing all the research and personal experiences.

    Jolene

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  9. We recently received results from mycotoxin testing from Real Time Labs.
    Results indicated his Ochratoxin, Aflatoxin, Trichothecene, and Gliotoxin levels were all elevated (ochratoxin being the highest elevated 8.86 ppb with 2.0 indicating a presence)
    I am not sure what to think. There has not bee much, if any discussion of myotoxins on this blog nor can I find much on evidence-based detoxification methods.
    Peter, what does the research say about mycotoxins and/or detoxification?
    Thanks.
    Nancy

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    1. Nancy, ochratoxin has been shown to be associated with autism and it does affect autism genes PTEN and MeCP2. You can reduce ochratoxin by using lactobacillus probiotic bacteria and diet.

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    2. Role of mycotoxins in the pathobiology of autism: A first evidence
      http://www.tandfonline.com/doi/abs/10.1080/1028415X.2017.1357793?journalCode=ynns20

      The adsorption of ochratoxin a by lactobacillus species.
      https://www.ncbi.nlm.nih.gov/pubmed/25247265

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  10. Should I be looking to support uploading of PTEN and MeCP2?
    My son has been a positive responder to cromolyn sodium (his skin clearly significantly with this) and L-histidine, as well as luteolin. I am convinced there are mast cell issues. NAC has also been a significant reducer of rages. With your help, the rages have decreased at least 80%.
    In looking through your posts, I see MeCP2 was affected by Lion's Mane. This mushroom used to be a must-have for my son back when I was treating primarily with herbs and other natural treatments. I sort of forgot about it.I don't remember either of these genes being highlighted as having mutations in the genetic testing we did a few years back.

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    1. Nancy, you do not need to have mutations in a gene to have a problem with it. The by-product of a fungus on a food like maize has got into the food chain and your son has eaten it. This has changed the expression of some autism-relevant genes in your son.

      I would try and find the source of the ochratoxin, so you can eliminate it and then use the probiotic bacteria suggested to remove what remains in him.

      I would prioritize that over MeCP2 and PTEN, but you could do this as well.

      I know a little about the similar alphatoxin. Alphatoxin is produced when maize gets damp due to poor storage or just unusual weather and a specific fungus grows. The maize gets used as animal feed and then alphatoxin appears in milk. Milk is routinely tested for alphatoxin.

      If you buy dairy or meat products from small local producers, it may not have been tested. Also some organic methods mean that fungi causing mycotoxins is allowed to prosper.

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    2. Nancy thanks for bringing up this topic. I was just thinking to check if Great Plains Lab has made their mycotoxin panel available.. I'm sure you have heard about cholestryamine used to bind up these toxins - protocols like Dr Shoemaker's. Very extreme. what about melatonin and CoQ10?
      https://www.ncbi.nlm.nih.gov/pubmed/17365150

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    3. Nancy, look at this page:
      http://www.ochratoxin.info/p/treatment.html
      Interesting it lists a study using sodium bicarbonate - I have been using that for many years and in the last couple of years added potassium bicarb to it for my son when he has mainly a gut/allergy reaction.

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  11. Peter,
    We lived for years in a house that had obvious water damage in the bathroom and he worked in an ABA program in our sometimes humid basement that had old carpeting (long story as to why nothing was fixed sooner)
    This basement and bathroom were fixed a few years ago. We moved to a new house last September (a year ago). My son is now23. I am confident that this unhealthy environment is responsible for at least one of the mycotoxins. My son had a second regression after working 2 years in that basement environment. He had been making incredible gains then brain fog and inability to retain learning took over(coupled with increased physical stereotypy). His therapist developed lupus.
    I am feeling confident that the exposure has been stopped with the move.
    We are beginning treatment with binders and will eventually add in intra-nasal antifungals. (Our dr has recommended FIR sauna as well but I can't find research to support it. Is there any?)
    I use Bio Gaia as I am cautious about which probiotics to use with the histamine issues. Not sure how to build in appropriate probiotics for one thing that are not appropriate for another.
    Given that the exposure has stopped and treatment has begun, might a statin make sense or am I off in that thinking?
    Thanks so much for your help.
    Nancy

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    1. Nancy, all these probiotics are different. That study I mentioned used 3 types of bacteria, one is called Lactobacillus Brevis. It is also used for souring beer, the advantage is you can buy it cheaply. I just found this:-

      http://www.homebrewing.org/White-Labs-672-Lactobacillus-Brevis_p_5079.html

      I cannot tell you if Brevis might have bad as well as good effects. But we know that mycotoxins have bad effects.

      You could also write to the Italian author of the first paper. She is the one suggesting to use probiotics. Her details are below.

      Correspondence to: Barbara De Santis, GMO and Mycotoxin Unit, Department of Food Safety, Nutrition and Veterinary Public Health, Italian National Institute for Health, Viale Regina Elena, 299-00161 Roma, Italy. Email: barbara.desantis@iss.it

      Since your son is 23, I see no reason why not to trial Atorvastatin. If he is a responder, the impact is visible within a day or two.

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    2. Thanks Peter and Tanya,
      I will definitely read the web page re: this mycotoxin.
      Peter, are there a certain statin that might be recommended over another? Are any of these OTC?
      Nancy

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    3. Nancy, the most likely statins to help are Atorvastatin (Lipitor, in the US) or Simvastatin. They are prescription drugs in the US, but most people over 50 should find their doctor very willing to prescribe them. They are prescribed very widely, just ask your friends.

      As always, only use it if there is a clear beneficial effect. We use Atorvastatin 10mg, which is the lowest dose and have had no side effects whatsoever.

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    4. Nancy can't thank you enough for posting on this. Just checked Great Plains labs thanks to your reminder, and an announcement for offering this test was just posted on their site a few days ago - here is a small excerpt from their page on treatment recommendations (NAC on the list):
      "Treatment for mold exposure should include fluid support to prevent dehydration. The drug Oltipraz can increase glutathione conjugation of mold toxins while inhibiting the toxic effect of P450 oxidation, reducing liver toxicity and promoting safer elimination (PMID: 18286403, 10050868, 7585637). A diet of carrots, parsnips, celery, and parsley may reduce the carcinogenic effects of mold (PMID 16762476). Bentonite clay and zeolite clay are reported to reduce the absorption of mold found in food (PMID: 16019795, 18286403). Supplementation with chlorophyllin, zinc, A, E, C, NAC, rosmarinic acid, and liposomal glutathione alone or in combination have been shown to mitigate the oxidative effects of mold toxins (PMID:22069658)."
      Nancy, please keep posting here about your son's progress with the treatment. My son is older also - just turned 18 - not many parents with older kids comment here. But he also seems to fit a similar profile to your son from what you have mentioned so far - allergies, mast cell activation, responds well to gastrocrom, rashes in history. He is extremely allergic to molds per IgE and lupus runs in family history - my grandmother's could have been triggered by mold. We do not do any fermented foods and probitiotics have always been tricky for him. He has been a great responder to dietary intervention as the food triggers are a big part of what can make his "autism" worse. I think our house has mold issues from basement and we live right next to a creek, next to a lovely moldy forest. We have a whole house air filtration system but not sure how effective it is. We are in the process of building a new house and moving soon. Anyway, didn't mean to make this lengthy, just wanted to share a bit of background. Keep posting! sending well wishes.

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    5. Tanya, I, too, am always looking for older kids responding to treatment. Honestly, all the good advice I have gotten in his 23 years (and we have many nationally known "autism" doctors and done pretty much everything) I have gotten from this blog. I'm so thankful but it's so maddening that so much time has passed.
      But I keep reading this blog and continue to be hopeful.
      We are using Great Plains bentonite clay and Takesumi (carbonized bamboo from Supreme Nutrition) as binders. He also takes liposomal glutathione and has being taking lots of NAC for a couple years since reading this blog. We are going super slow. I don't want regression on the raging which is all but gone.
      I am not sure about Real Time Labs as I have heard mixed reports. But the test results sort of make sense to me given our history.
      I have read that HBOT can kill mycotoxins. I am not sure and this blog has convinced me that unless there is research behind an intervention, it might be a wild goose chase.
      I will definitely keep you posted.
      Nancy

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    6. Nancy, I agree - Peter's blog is the voice of reason without hype and bandwagon mentality. Very helpful. It's why I keep reading this blog and will never give up on my son. We also have been to many of the big name DAN docs. A couple better than others, but I don't think that approach was ever personalized enough. I'm not sure about hbot either. Back in our DAN cookie-cutter days , we actually owned a mild chamber for over a year. Saw no difference whatsoever. But that is just for my son. I am with you - after many years in the biomed rat race, I have become much more discerning. Plus, time have just given me much more information on my son, so I feel more confident what to not waste our time with - and not risk making things worse by an intervention - because I think that happens more often than not. If you would like to stay in touch privately, please feel free to email me tanyastatum@gmail.com. I would love to continue comparing notes.

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  12. After a horrible summer of eczenam, SIB and tantrums trying various solutions here, what eventually worked to calm our son was 10 mg of atarax (hydroxyzine, killed eczema for the first time ever) and 40 mg of propanalol.

    Now that his inflammation is managed may retry bumetanide and clonazepam. May also try Spironolactone.

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  13. First generation antihistamines like Atarax do seem to be much more potent than modern ones. It is great that it was effective.

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  14. Hi Peter, interesting paper published today in regard to aluminum neurotoxicity and immune activation/neuroinflammation. http://www.sciencedirect.com/science/article/pii/S0162013417300417 for my family this is significant, as our daughter had a clear regression at about 2 years old. I always suspected vaccines are what tipped the scale for her.

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    1. It is an interesting paper. Dr Frye recently published another paper about aluminium.

      I think there must be efforts underway to may vaccines safer, but we do not usually hear about them.

      You probably won 't like this idea:-

      Every childhood vaccine may go into a single jab
      http://www.bbc.com/news/health-41269196

      But actually if you read the article it is a clever idea.

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  15. Here is an interesting paper on a rare congenital disease that causes too much insulin to be produced in the body:

    Press Release:

    https://www.sciencedaily.com/releases/2017/09/170918090750.htm

    Paper:

    https://academic.oup.com/hmg/article-lookup/doi/10.1093/hmg/ddx213

    Now with respect to autism, hyperinsulinemia causes several symptoms that seem to pop up in autism a lot, plus anecdotally many parents seem to have issues with challenging behavior issues after ingesting a significant amount of sugar (my son included).

    So first of all, high ammonia levels have been found in several autism studies and hyperinsulinemia will yield high ammonia levels.

    Secondly, too much insulin will cause too many nutrients to be absorbed in the periphery (such as the muscles) leaving very little for the brain. In other words, if the brain is not in a state of ketosis, the brain is starved of its primary fuel source (glycogen).

    Third, insulin causes BCAA's to be drawn into the muscles, leaving more room for aromatic amino acids such as phenylalanine, tyrosine, and tryptophan as well as tryptophan's metabolite L-kynurenine to make their way into the brain which can help facilitate higher than normal levels of dopamine and serotonin.

    Fourth, insulin is associated with excessive growth and obesity in development and both are in higher than average levels in the autism population (especially among people with macrocephaly or macrocephaly like features).

    Fifth, obesity in the mother, excessive weight gain in the mother during pregnancy, diabetes, and gestational diabetes are all associated strongly with increased risk of autism in the offspring to the extent they can now be considered the leading environmental risk factors for an autism diagnosis and excessive insulin exposure to the fetus primes he/she for higher than normal insulin levels later on in life as well as the same negative health features of the mother (obesity, diabetes, etc.).

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  16. So while this paper discusses a congenital form of hyperinsulinemia, I find the parallels interesting and even though there have been many autism papers written discussing insulin, I have not seen any discusssing hyperinsulinemia in the absence of full-blown Type II diabetes in the child. It may be that the hyperinsulinemia and glucose hypersensitivity eventually leads to type II diabetes in adulthood in many people with autism, but in the earlier years when the beta cells in the pancreas have not been exhausted to the point of cellular death, that the hyperinsulinemia in those with autism will do the most damage to the brain from acute doses of sugar that cause a massive spike in insulin, so much in fact that very little of that sugar ever makes it to the brain as the insulin causes all the sugar to be deposited in the muscles and fat cells.

    One interesting thought I had in lieu of all of this goes back to trehalose. Trehalose in large quantities (100g or more per day) in one particular study seemed to improve autophagy in capillaries leading to improvements in blood pressure concerning the microvasculature. Trehalose also is useful as a glucose fuel source as it is not immediately processed in the stomach as sucrose and other sugars are, rather it slowly gets degraded two two glucose molecules via the trehalase enzyme, which causes a much slower release of insulin and a more timed release method of glucose administration. So it might be the case that a water bottle filled up with trehalose each day may help those with autism who have a macrocephaly like profile. Of course, there are many other interventions that help control insulin spikes. One is dietary fiber. Inulin is a sweet tasting long-chain polysaccharide that is not digested until it reaches the large intestine where it is fermented. It is sweet tasting so it might go good with trehalose here. There are other drugs that control blood sugar as well (metformin for instance), but the issue here is that high insulin levels might be triggered by any signal in nutrition and that it might be prudent to keep some glucose around at all times (via trehalose degradation) to keep the brain from getting too low on glycogen. Either that or go for a full-blown strict ketogenic diet as many people already do.

    These are just some ideas by the way and I really don't know a whole lot about hyperinsulinemia and autism, but I find the parallels striking and wonder if a whole lot of good could be gained from a simple dietary intervention.

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  17. I also find striking the underlying parallelism of our son's cases, i had gestational diabetes.his head is more big than small.valentina

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