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PolyPill for Autism

The objective was to identify the most effective drugs to treat Classic early-onset autism, having biomarkers of elevated serotonin, cholesterol, thyroid FT3/4 and growth factor IGF-1.  Except for the Potassium Bromide, these drugs are all generic, widely available and cheap.  The total cost per day is about EUR 1.3 ($1.6).

The dosage is based on a 13 year old child weighing 50kg / 110lbs. He has been using a very similar version for more than four years.

The Clonazepam dose is tiny.

Potassium bromide has the same effect as bumetanide, so whatever you see from bumetanide, you should see more of.  The human drug form is called Dibro-Be Mono, but is available only in Germany and Austria. 

According to the European Medicines Agency (EMA), most countries have an arrangement whereby patients can apply for access to drugs for off-label use, usually based on experimental evidence or clinical trials.  If you use these drugs, it would be helpful to collect data on the effect that can later be used by the EMA to evaluate the Autism Polypill.  You can send me the data.

Since most doctors continue to regard autism as untreatable, you will have to be proactive, if you want a drug to treat your child.


Updated 13 April 2017


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In case you have to deal with periods of the year where no intervention works, this may be due to allergies.

In the case I deal with, all the above therapies appear to gradually "stop working" from mid-May to October.  Very surprisingly, this is due to the affect of a pollen allergy, that outwardly looks quite mild; but the affect on behavior is dramatic.

The remedy is to use mast cell stabilizers to treat the allergy, but the most effective step is to increase the Verapamil dose to 1mg/kg 2 or 3 times a day.  Verapamil is calcium channel blocker (Cav1.2 channel) but also a very effective inhibitor of mast cell degranulation.  The combined therapy appears to be 100% effective; summertime behaviour is now just like the rest of the year. It has to be seen to be believed, almost too good to be true.

As mast cell stabilizers I am using Quercetin, Azelastine and Palmitoylethanolamide (PEA).  It may be that Verapamil is potent enough, that nothing else is needed.  Claritin, Xyzal, Ceterizine etc, all help, but not for long.  Without Verapamil things improve 50% for a short time; with Verapamil things return to 100% "normal" for the entire day.

Not all broccoli sprout powders are equal.  They must have high levels of active Myrosinase and low levels of Epithiospecifier proteins (ESP).  If not, when eaten they will not produce Sulforaphane, the most likely active ingredient .  According to lab testing, most broccoli powders produce little/no sulforaphane.  Check in my posts.  



123 comments:

  1. Great information. Do you happen to know if verapamil affects exercise? Such as a 30 minute jog daily, would it prevent one's heart rate from increasing? I'm curious because I am an individual with asperger's but am very physically active.

    Thanks,
    Ned

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  2. Verapamil is a very common drug and I think if you read up on Google about it, you will find the answer. Most people taking this drug probably are less active than they should be. I am using a very small dose. The target is extreme anxiety that if unchecked leads to aggression and SIB. If you do not have these issues, I would not try Verapamil. If you want to improve mood and social behavior I would think the very low dose Clonazepam might be helpful. Bumetanide also showed a good effect in Asperger's, but it will involve extra visits to the WC, which may or may not be an issue.

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    1. Hello Peter,
      I don know if i have well understood.
      For regressive ASD adequate supplements are mitochondrial supplements like carnitine,coQ10,ALA,thiamine,nicotinamide...and for classical ASD polypill treatment like NAC,bumetamide,atorvastatin,K,Mg,clonazepam,verapamil....
      And another question that I have is how to know if child has classical or regressive ASD??
      Thanks a lot and congratulation for your blog ,you help a lo of people sharing your experience
      Olga

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    2. Classic autism is when the child never had speech and other skills and then very slowly acquires them. In regressive autism the child develops speech and then loses it, and then very slowly has to reacquire these skills. My blog is about classic autism, in some types of regressive autism the problem is mitochondrial disease. I think some people may have a combination. Most of the drugs in the polypill work very fast and so you willl so on know if they help. Bumetanide takes the longest, you should try for at least two weeks. The others will need no more than three days. If there is no effect then stop using it.

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    3. Ah ,ok ,thanks. But most of them are drugs ,so we will need a doctor who prescribe them and follow the treatment I suppose...
      Is not easy find a Dr who want follow this treatment un muy country...I will search...if you know any Dr who treats world wide please let me know...
      Best Regards,

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    4. Doctors are taught that autism is untreatable and so not a medical condition. The science shows this not to be true. If you choose to follow the science, then you are on your own. Sad but true. In some countries, particularly the US, there are doctors trying to treat autism, but most do not read the science. If you want bumetanide, show the clinical trial to your doctor.

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    5. Y es,you are right,I know.we have done a lot of protocolos:DAN,YASKO,MMS..with any mprovement...but now he is taking lamotrigine for seizure and I think I can not give another drug without a doctor supervision ,do you know if this kind of treatment is compatible with drugs forma seuzure?thanks

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    6. This comment has been removed by the author.

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    7. My son does not have seizures and with these drugs I do not think he ever will. Once you have seizures you must be careful. I expect a doctor will tell you not to try anything. I do not see why antioxidants should affect seizures, so that would be NAC and the broccoli/sulforaphane. I think bumetanide and verapamil may well protect my son from ever developing seizures. If you live in the US, you may struggle to get the prescription drugs that I mention. If nothing works, you may have something different like mitochondrial disease, but this can be diagnosed at a good hospital like Johns Hopkins.

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  3. How would one go about getting a TRH agonist? I have only found limited information online. Is there a pharmacutical available one could take? It seems like an interesting drug for autism, especially the fact that it inspires happyness, laughter and affection. Also as far as atoravastatin, do you mind going into a little detail for me the effect it had on your little one as far as "affection"? Great blog by the way, very informative and one of my favorites.

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  4. Atorvastatin's main use is to lower cholesterol, but it also reduces chronic inflammation. The effect in autism appears to affect inhibition and spontaneity. One of the notable changes after trying it for one day was my son sneaking up behind me in the kitchen, climbing up on a tall bar stool, and giving me a big hug. He wanted to be at the same height as me, not hug my legs. This had never happened before. You could also see that before he was "stuck", he wanted to do something, but felt blocked from doing it. This goes away with the statin and returns if he stops taking it.
    TRH in oral form is not readily available, except in Japan. Elsewhere it is possible to buy a drug called Protirelin. Antepan is a brand name of Protirelin, that is available as a nasal spray. Some people make there own nasal spray using an ampule of Protirelin diluted in saline. Only a tiny amount is required.

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  5. Have you thought about Baclofen as a possible piece of you polypill? Arbaclofen was under trial for autism, and despite falling through has helped many people. Personally Baclofen is the only thing that has made a great difference in my mood/sociability/irritability. In fact, it has helped every aspect of my condition. Gaba-B agonists seem to open the door of Autism into the Neurotypical world, helping me socialize and simply giving me a better quality of life. I'm sure you've been asked this before, and your research is second to none in my opinion.

    Also this polypill, is it something you plan on creating as an all in one treatment that will be available to all of us? Either way I appreciate the time and research you put into this blog.

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    1. It is interesting to hear that Baclofen works so well. What dosage do you take?

      I did write about Baclofen, R/S – Baclofen, Arbaclofen, and the best of all, Arbaclofen Placarbil. Baclofen also stimulates Growth Hormone production, which I thought might be very relevant.

      http://epiphanyasd.blogspot.com/2014/02/human-growth-factors-autism-and.html
      http://epiphanyasd.blogspot.com/2013/11/autism-clinical-trials-arbaclofen.html

      I did trial Baclofen and it did have a positive effect, but on nothing like the scale as Clonazepam. Baclofen does have some side effects and I want to use drugs that have the least chance of interacting with each other. Clonazepam and Baclofen both affect GABA, so I chose Clonazepam to replace Baclofen.

      My PolyPill is the current version of what I think is the best combination of drugs to treat my son’s type of autism. I have discussed it with the European version of the FDA and given them a presentation of the rationale for it. The next stage would be to trial it on other people, who have the same type of autism. This then starts to get quite complicated, time consuming and expensive. These are all generic drugs, so there is no financial pay back. I develop my PolyPill with a few hours a week of work, to get a drug approved costs tens of millions of dollars in the US. Anyone who wants to, can mix up the PolyPill at home, just like I do.
      Also, I keep changing the formulation, as I learn new things. So for the time being I am focused on the easy part, which is the drug discovery part. If Bill Gates has $20 million spare, he is welcome to come and talk to me.

      Mainstream medicine is not equipped to deal with autism and such a complex condition is unlikely to be considered as treatable for decades to come.

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  6. Excellent information and analysis. Thank you for making it available.

    I am getting ready to start a trh analogue. Could you share your decision to go with protirelin instead of taltirelin given the very short half life of the first.

    Aargi

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    1. I am using Taltirelin, but it is only available in Japan and is very expensive. Protirelin has a much shorter half-life and I presumed it would not be effective; however things are not always so simple. We do not know about the binding of these TRH agonists at the various TRH receptors, maybe they remain there for hours. I found that, a now retired, US doctor, called Jay Goldstein, had for many years prescribed a home-made nasal spray made from an ampule of Protirelin, diluted with saline. It was used 3 times a day and was effective in the neurological disorders he treated.

      There is now a commercially available Protirelin nasal spray.

      There is also a sub-lingual TRH tablet called Abaris. It is expensive and is used as an anti-aging therapy.

      So the choice of TRH analog is as much about budget and availability as anything else. In small doses there is a good effect and, according to the literature, there may be longer term disease-changing effects. It is proposed that TRH has a role in maintaining homeostasis of many of the body’s functions. I cannot say whether it does or not, but autism definitely is characterized by the loss of homeostasis on many levels.

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  7. How do you measure 0.025 mg clonazepam?

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    1. I crush a 0.5mg pill and mix with water in a 100ml medicine bottle. I mix it with an electric mixer (sold for making coffee become foamy) since the pill does not dissolve, you just get a lumpy suspension. Then I use a syringe to measure 5ml. Keep the bottle in the fridge. Shake well each time you use.

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  8. My nephew has autism. We would like to try with your program. I want to know how important is taking the drugs schedule.
    Thank you!

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    1. All the ingredients have their own effect and the benefit will vary with the underlying dysfunctions in "your" type of autism.

      I would suggest you start with NAC and the sulforaphane/broccoli. They both show improvements very fast, and they do seem to work in more that half of people with a diagnosis of autism. They do not need a prescription.

      Bumetanide is highly effective in improving cognitive function, in about 30-50% of people with autism. This needs a prescription, but the effect is well worth it. It can make the difference between going to a special school and going to a mainstream school, in those where it is effective.

      Verapamil may help greatly if there are big problems with allergies, food intolerance, GI problems. Other indicators might include odd ECG or even, in one reader, a racing pulse rate.

      You should introduce them one by one and only retain those that are genuinely effective. People other than parents should be able to see a change, if it real.

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  9. I'm working on adding Potassium (just read your post on it) but what type of potassium; gluconate, cloride, or citrate? I'm using magnesium citrate already - 75mg twice a day. Is one potassium better than the other?

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  10. I think potassium supplements are a good as a diagnostic tool, because you can see if your child's behavior is improved by a "spike" in potassium levels. In a typical person there is no effect. The problem is you cannot keep increasing potassium levels. It appears to be the effect of the increase, rather than a steady high level of potassium.

    Amongst those whose behavior is affected by potassium, consensus seems to be to maintain "high normal" blood potassium levels and avoid sodium (salt). In the body sodium tends to "oppose" potassium; so if you cannot increase potassium (very high potassium is bad for you) you can at least avoid excess sodium. Most people eat far too much sodium and too little potassium.

    You should measure potassium in the blood.

    If it is already high, it would not be good to give supplements.

    In the US, supplements of potassium are very weak. The RDA is 3,500 mg and the supplements are limited to 100mg. The reason is that very high levels can kill you.

    I am using a 500mg tablet, taken half in the morning and half in the evening. But we are using Bumetanide, which is known to lower potassium levels and I do monitor blood levels of potassium.

    I do not think it matters what kind of potassium you use. Some also have magnesium.

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  11. have you considered any PDE-4 inhibitors (not just rolipram being talked about re fragile X)? I wondered if it might be another low doe, off-label support re classic autism? might be a couple of years away

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    1. That is a very good question and well worthy of its own post. PDE-4 inhibitors are shown effective in COPD (a severe asthma) which is made worse by oxidative stress, epigenetic change, and chronic inflammation. So it could well be useful.

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  12. Hello.I gave Bumetanide last year.I started on September ,after 2-3 weeks we saw big improvement in comunication and social skills,it was wonderful but after 1,5 months of treatment the effect desapaered...it was Christmas and we stopped
    I gave 1mg on the morning,I don know if I made something wrong...
    We never had low potassium so web never gave K supplemet
    Isabel

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    1. I can only speak from my experience. After 6 months I had added NAC and Atorvastatin to the Bumetanide therapy, things improved greatly. Then in June everything, particularly NAC, seemed to stop working.

      Eventually I discovered that the problem is my son's very mild pollen allergy. This causes a reaction which completely masks the beneficial effect of the drugs. By going to mountains with different pollen in the air, the drugs started to work again. That is why there are`many posts all about mast cells and allergies on this blog. By adding Verapamil, Azelastine and Quercetin, 80% of the allergy effect goes away. Without these drugs, bumetanide would only work for 8 months of the year.

      Once you begin to treat autism you will discover other issues that were there all the time, but you never noticed. My son's allergy is quite mild.

      You may have other issues like a food allergy that cause the same problem.

      Even treating the allergy, I had to increase the bumetanide to 1 mg twice a day to get cognitive function back to the improved level. I can check this just by asking simple mental math questions. In May he could answer a question, but the same question in July was too hard. The 2mg dose fixed this.

      Start the bumetanide again and, if it stops working, look for allergies.

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  13. I am very interested that you have tried baclofen. I am a practicing paediatrician in the UK & have been trialing baclofen specifically for anxiety in autism, & have had very good results, presumably based on its GABA-B agonist activity.I have about 8 children who are benefiting enormously, more relaxed, fewer tantrums, better sleep - parents are very impressed.

    However, I am using it off label of course. We use a lot of drugs off label for children because often the clinical trials are too difficult & expensive to make it worth while for the drug companies to get the licence, plus their profits will be relatively small compared to the adult poulation. However, it is expected that off label use is supported by at least a couple of respectable trials &/or a general consensus among colleagues, & I have only been able to find the arbaclofen trial which is very limited & was terminated early.

    So - I am out on a limb. I think it has enormous potential for the children at the more able end of the spectrum who are very prone to anxiety, especially the girls for some reason.

    Someone anonymous above has tried it & found it helpful, I would like to know how he got it, was it prescribed, if so by who? I am looking for other prescribers to support me, or some evidence in the form of research, otherwise I can't go any further with this

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    1. Tomorrow I will post about the Russian GABAb drug that is widely used there for autism and ADHD. You may then use the Russian research to support your ideas regarding Baclofen. Arbaclofen failed because start ups do not know how to plan clinical trials. In some children it was very effective.

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    2. Thank you, that will be very helpful.

      I believe the trial was terminated because they realised they had chosen the wrong end point, so it was proving effective in a way they hadn't predicted! The small number of children & the early termination make it a poor basis for off label prescribing, the successes only count as anecdotal

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    3. Kennedy Kreiger is recruiting for an Arbaclofen trial. Details on their website.

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    4. Hi,

      Would appreciate if you can share your contact details. My son is 2 years old and has been under the guidance of a nutionalist and undergoing Biomedical Intervention. I am also keen to get a second opinion from a practicing paediatrician in the UK.

      My contact details are as follows:
      angeshwar@gmail.com
      ph: +44-7706-160258
      Deepak A


      regards,
      Deepak.

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  14. Hi Peter,
    I am a parent of a 21 yr old. We have tried so many things...Your model of looking at autism treatment is exactly what I wish the myriad of doctors we have seen would use.
    Seth was diagnosed at 3, after beginning to gain skills (language, social skills) then lost them. He began ABA shortly thereafter and regained so much. At around 5, he developed brain fog, intensive stimming, and severe inability to focus and retain previous skills.
    At around 19, he added rages and mood swings to the mix. OCD began to creep in. He was diagnosed with lyme and the presence of viruses. His current doctor goes after whatever seems to be the order of the day and I keep thinking we should look backwards to that baffling regression at around age 5.
    Your thoughts as to what our detective work should consist of at this point?

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    1. Seth does fit the pattern of what I called "double tap" autism, where the initial autism later gets worse in a second step. In some people this is a mast cell (allergy) problem, in some it is mitochondrial dysfunction, in some it seems to relate to variants of PANDAS. To figure out what it might be look for what makes things worse or better. Look for external triggers, even simple things like diet, the time of year, stress etc. You could see if simple things like ibuprofen have an effect. If it is immune related, then it might well result in good days and bad days. If it is mitochondrial disease, this can be tested with standard lab tests. Things like stimming should respond to NAC. Also look back to see how he responded when he ever had antibiotics, or ever steroids.

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  15. This is fascinating. Antibiotics have not done much to improve things observably. Parasite treatments seem to calm down his "buzzing" body (it's painful to watch how wired he can be at times). The muscle tensing and jaw tensing--a weird form of seemingly uncontrollable stimming, seem to go down with the herbal parasite pulsing. Grapefruit seed extract has helped off and on.
    We have some sort of genetic testing from Yasko but if we need something further to better understand treatment, I am all for ti. My late husband's nephew was diagnosed at one point and my husband himself felt like he was on the spectrum. He took his life 5 years ago.
    What kind of genetic testing does one do?
    Thanks.

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    1. In most cases genetic testing does not seem to be that helpful, which is a pity. There is no easy way to figure out what to do, so it is a case of trial and error, but you can look for what other symptoms exists and what external factors affect the autism. I think that supplements will only take you so far, drugs that target specific dysfunctions are needed, but you may struggle to access them.

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  16. Hi Peter,

    I just found your website while investigating mast cell disorders, and it is amazingly informative. I am a 30 year old woman with Aspergers. I have had symptoms my entire life, but only became aware I was on the spectrum in my late 20s. As a result, I have always had strange physical anomalies and drug reactions, which were overlooked in my youth.

    Three years ago, I suffered a bout of Lyme disease, and either inflammation, encephalitis, or the drugs I took caused a traumatic brain injury. About half a year later, I contracted HSV1, and it damaged my immune system. I now have a natural killer cell deficiency, myriad allergies and intolerances, and potential mast cell issues, in addition to chronic viral and bacterial activation.

    I also noticed that I have developed more "classic" spectrum behaviors such as stimming, sensory overload, seizures, a loss of self and social awareness, as well as empathy, and a tendency to be less spontaneous/more self absorbed. I am not sure if these are the result of the brain injury.

    I read about your "double tap" theory, and wonder if it could apply to me, even at 30. Are immune defects common in autism? I cannot suppress viruses in my body at all now, and seem to have become intolerance/allergic to many substances. Do you have any advice as to where I could seek to address this? (Being on the spectrum and trying to persuade doctors of anything is a daunting task.)

    Also, thank you again for sharing all this information and being so proactive with your son. As a person on the spectrum, it really means something to see such a caring parent.

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    1. Depending on where you live, you may find a helpful allergist/immunologist. Otherwise you may have to self treat. Many things are available OTC. I would try NAC, common H1 antihistamines, statin, pregnenolone etc. Most of these things work very fast, if you are responder, so it does not need a lot of time or money. By finding what helps you can narrow down what the problem is.

      I am sure a double-tap can happen at any age, it just would not be called autism. TBI is very interesting as is post traumatic stress disorder, these are just conditions where homeostasis got disturbed. There are many overlaps with some autism.

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  17. Hi Peter, Do you have any idea as to why a medication may work once and then stop working?

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    1. This seems to happen quite often in autism. It happens because something else has started working and this blocks the effect of your medication. In our case the effect of allergy and mast cell degranulation increased inflammatory cytokines and then previously effective drugs appear to have lost their effect. Several people have noticed similar effects in their child.

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  18. Hi Peter,

    Here is a long overdue feedback on Verapamil and Bumetanide.

    Verapamil: Started May 2014

    Epilepsy: Seizures went from two a week to one after 45 days. A few months later we had one more such gap of 48 days between seizures. The rest of the time, she went back to once every 28 - 30 days, which had been her pattern prior to a secondary hit caused probably by severe allergies.
    Most fevers would also result in a large tonic clonic and from 2010 onwards she had been having recurrent sore throat and fevers, several times a year. She has not fallen sick once since Verapamil and therefore, no febrile seizures. (I also read that in TBI, the brain gets a good 2 to 4 degrees hotter than the rest of the body, so while the thermometer may be showing 100, the brain might already be at 104. In future, I have decided to cut the fever as soon as it begins.)

    Health: Obviously, immunity improved, in fact I took out the zinc that she had been supplementing with for years and that was supposed to help so much. For a while there I thought taking it out had somehow improved her immunity until I realized it was the verapamil. Interestingly though, verapamil does nothing directly for her seasonal allergies.
    Very good for anxiety, can stop an anxiety episode cold. If dosed properly, without missing doses and at the right gap, keeps it away.

    Autism: Flare ups, rages, sib, all of these stop within 20 minutes to half an hour. But allergies can cause a meltdown within 2 hours of dosing and we would have to come in with something else.

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    1. Thanks. I also fiind it odd that verapamil treats the autism flare up caused by allergy, but not the allergy itself.
      In the allergy season I cut the verapamil pills in half and use more frequent, but smaller doses. It works well.

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    2. We moved from 80mg twice a day to 60mg thrice a day. Is it worth dividing this even further?

      I wish I had learnt this earlier as I get the verapamil compounded in capsules and could have easily had it done in a sustained release form.

      I have the prescription for 60mg four times a day, because this is the maximum dosage in the study by Mayo clinic for seizures. Btw, that study completed this year and was successful though the full results have not been published yet.

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    3. Verapamil has a short half-life, that means to maintain a high enough dose in the body you either need an overly high dose or a more frequent low dose to stay within the therapeutic range. I was using 40mg three times a day, but three or four hours after the first dose the effect is lost. So I use a pill cutter and start the day with what ends up as the bigger half and then three hours later at snack time at school, my son gets the smaller half. This has resulted in better performance at school. I also keep in my pocket some half pills and also NAC. The other day we went to an opera that finished at 10.30pm, so in the interval I gave a half pill of verapamil, to ensure all went well. It did. Verapamil is well tolerated, but one reader, Maja, did encounter side effects. This drug is really helpful for my son and so I would not want to encounter side effects, so I am keen to use the lowest total daily dose.

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  19. Bumetanide: Started May 2015

    This has been a big one for us.

    Epilepsy: Since starting bumetanide, most of the seizures have been the mildest we have seen, with easy and immediate return to normalcy. We have had only two tonic clonic seizures and both were at times when we had not dosed the bumetanide yet that day. coincidence? We are at only 1mg once a day. In the past, an hour past a seizure, she would be irritated, mildly distressed with a lot of jaw pressing and stimming intensely for hours. Since bumetanide, we have had the post seizure irritability only once, and for a short time, and it was after the tonic clonic where we had not dosed yet. I think it also raises the seizure threshold as I see many instances such as after exercise, allergies, etc where she might have otherwise had a seizure. These days, I am giving it before going to the gym.

    Social: much more demonstrative and affectionate with her dad. She had a great time with my brother when he visited, interacted with him quite a bit, and did not want him to leave. We had no clue that she liked him so much, we thought she did not care. Since the visit, she has also been willing to talk to him a little bit on the phone. Has also been talking to my parents on the phone, laughing and excited with them.

    Cognitive: Briefly, about my daughter, she has regressive autism, dyspraxia with a lot of motor coordination deficits and visual agnosia. She speaks hundreds of single words, and some phrases, but never been able to expressively use verbs. So, a lot of communication takes place with single words and songs. She is very bright, though cannnot be tested, does calculations as to time, date etc in her head and will then use words such as 'four saturdays' etc. Not a savant skill, actually calculates. Until bumetanide, ABA has not been possible.
    She is now using verbs, making phrases. Is even occasionally using adverbs. Able to answer a lot of 'what is he/she doing?' questions. Need to work systematically on this. Looking at ABA programs now, because she is able to point much more reliably. Her eye hand coordination is much improved, especially with pointing. Her finger does not tremble as much and she is able to be search out with her eyes first and then follow through with her finger, and all of this pretty fast.
    Writing has always been a huge challenge because of the vision issues, but suddenly now, she has taken a big leap forward. She remembers the form of the alphabet and is able to move to mid points, diagonal lines, etc. She is also writing the alphabet as dictation, without visual cues.
    Reading: In the past, I relied more on her very good memory to acquire reading skills, now we are much more systematic, and she is on her way to mastering the phonemes, and is able to blend them and read out loud.
    Classes have now become so interesting and fun these days. There have been so many more things that are changing day to day.

    Peter, just cannot thank you enough for all that you do, it is invaluable.

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  20. Peter, I was wondering if we should increase the bumetanide from 1mg once a day, to 1mg twice a day.

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    1. It is certainly worth trying to see if there is an additional benefit. 1mg twice a day is the dosage used by the researchers, but if there is no further benefit then once a day sounds best. This reduces the loss of K+ etc. I do give my son 1mg twice a day, because it does work better in his case.

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  21. Peter,I have try NAC and it,s good,my son 's steriotipies has reduced.Now I have add Brocoli sprouts 1/2 tea spoon in the morning...but nothing has improved.Must I give him more quantity??His weight is 60 kg.Can you tell me what can I do??thanks

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    1. You can try more broccoli sprouts, it is very safe. Not all people respond to it. Which brand are you using?

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  22. Súper sprout from Australia

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    1. I would double the dose and see if any there is any behavioral change. If there is nothing, then he is not a responder. Best to give powder to someone else to try. There are other antioxidant therapies, like carnosine, that you can try.

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  23. Hi Peter,
    Was wondering if you have added any other medicines to the poly pill, like coco flavanoids
    My kid is currently on Bumex and Clonozepam (minute dose), and is doing better.
    Looking at brocolli sprouts next.
    Have you heard of MNRI (mastugova) and ANAT baniel methods of sensory integration and neural path development, my OT is starting to use some of these, but to get trained is expensive for MNRI.
    BK

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    Replies
    1. Hi BK, no I have not added anything yet to the polypill.

      In the end my therapy will be very specific to one person with autism.

      There are therapies for the core of autism and others that help the secondary problems that vary widely from person to person.

      In terms of improving cognitive function, which is what Bumex and Clonazepam are doing, the statin has a real impact in my son. It has an effect from the first dose.

      I have not heard of MNRI/ANAT. There are numerous therapies.

      Delete
    2. Hi BK,

      We did the Anat Baniel program at her main center here in California. It was week long and included sessions with her and Dr. Neil Sharp. It was good during and for about a week after the program. But the changes would not hold. The program was crazy expensive, I think we paid several thousand dollars. The mistake I made was that I had assumed that the program would help my daughter develop a good body schema and that we would build from there on. This was not the case, and I learnt later that many of the glowing testimonials come from people who work with them for months at several times a week. To work with them on an ongoing basis would have cost me about $6000 per month. In my opinion, it is a far better program than those offered by OTs, but useful only if it can be done consistently several times a week, probably for months or more.

      I think your son is very young yet, but do keep literacy in mind, I see it sidelined in a lot of specialist programs. It can take him to a much better functional place developmentally. Here is a link to a wonderful article written by a nonverbal autistic boy:
      http://journal4hari.blogspot.com/2012/05/a-hypenated-american-in-nth-dimension.html

      Delete
  24. Hi RG,
    Thanks for your reply, do you mean the ability to understand and write when you say literacy, I think that would be definitely very important, for us, he is 3 years 5 months, speech is his biggest issue, Bumex has helped a lot where he is playing and smiling with us.
    Yeah I feel like I am getting ripped off too several times on this journey (DAN doctors), but our OT who we feel is good mentioned about MNRI, what I am trying to do is watch and learn and try it at home. So I will keep trying that. MNRI was very expensive too.
    Thanks
    BK

    ReplyDelete
  25. Hi BK,

    Sorry for the late reply. By literacy I mean reading and writing with comprehension, and also math. Starting with reading and writing words, to simple books, to academics. As much as speech is an important and wonderful thing to have, I believe that literacy is even more important, as with it, one can have communication. Many interventions can be tried for speech, but one can never be sure if it will come and to what extent. Whereas, the chances for reading and writing and comprehension are very high. It can engage and challenge the mind, and lead to a quality of life that is intrinsically rich. It is one of the key requirements for a person to live independently.

    My daughter is an older kid, and what I have seen is that, every autism intervention, including doing nothing, has about one percent of kids who 'recover'. This blog is the only one that is completely rational and systematic. By translating so much research into practice, Peter is bridging the chasm and offering something completely unique. He gives us all a chance to succeed.

    ReplyDelete
  26. Looking to try broccoli sprouts extract and I was wondering if there is a brand you recommend.

    ReplyDelete
    Replies
    1. I am using Supersprouts from Australia.

      http://www.supersprout.com.au/broccoli-sprout.html

      It only needs 2.5ml (half teaspoon) a day and so it is not expensive.

      The lab testing shows most broccoli supplements do not produce suforaphane. Supersprouts band does seem to work. It is not the most expensive.

      Delete
  27. Hi Peter,
    Based on your experience, what medicine that can improve imitation deficit?
    Thanks,
    Abdul

    ReplyDelete
    Replies
    1. Abdul, "imitation deficit" is an observational diagnosis that would apply to the majority of young children with autism (meaning strict definition autism). This can mean all kinds of imitation, verbal, physical etc. I think it is just a reflection of cognitive dysfunction. The child is not fully aware of what is going on around them and does not have full control of his/her body. How to improve cognitive function? In our case this was bumetanide, low dose clonazepam and atorvastatin. For other people different therapies may be needed.

      Delete
  28. HEllo Peter
    I have learnt that Atorvastatin depleats coQ10,so you must give this supplement
    Only for your knowledge .. I hope this helps
    olga

    ReplyDelete
  29. Hello Olga
    Thanks, we do add coQ10. I think all people on statins should take this supplement. One symptom of coQ10 depletion is muscle pain. Many adults on statins complain about these pains, but atorvastatin seems to be the best tolerated statin. I give 100mg a day of coQ10.

    ReplyDelete
  30. Hi,

    My son is 2 yeard old and is under Biomedical Intervention under the guidance of nutritionist (with vitamin, probiotics supplements).
    Since starting Biomedical intervention - my son has shown promising improvement.
    Like Improvements in Speech, better eye contact, less hyperactivity, better sleep at night.

    I would like to get in touch with the practicing paediatrician in the UK.
    ..............................
    Quoted from the above post:

    Anonymous 22 April 2015 at 20:05

    I am very interested that you have tried baclofen. I am a practicing paediatrician in the UK..........
    ..............................



    Though my son is making good progress under the guidance of nutritionist, I am also keen to
    get consultation with a practicing paediatrician in the UK.

    So Would appreciate if that person can send me his/her contact details.

    My contact details are as follows:
    angeshwar@gmail.com
    Ph: +44-7706-160258

    regards,
    Deepak A


    ReplyDelete
  31. Peter for the Australian sprouts how did you come to the dose of 2.5 ml and should it be given only in the morning if so why thank yo

    ReplyDelete
    Replies
    1. I tried different doses and this seemed the lower dose that had a good effect. I did try giving twice a day. It can cause hyperactivity so giving in the evening might be unhelpful. The lower the dose of anything reduces the chance of un wanted side effects. Many supplements do have side effects, just like drugs.

      Delete
  32. Peter great post by the way do you still use PEA what did you notice with PEA

    ReplyDelete
    Replies
    1. In my son's case the best therapy for allergy induced autism flare ups is Verapamil + Azelastine nasal spray with oral H1 antihistamine on the worst days. PEA was not effective, but it does have effects that may help other people.

      In addition when the sides of his nose go bright red due to allergy, regular hand cream controls this without any prescription-type creams. Controlling the visible inflammation does help minimize the increasing autism.

      Delete
  33. Dear Peter,
    For a non verbal child who is doing well with NAC what pharmaceutical drug would you suggest might be useful for speech from your polypill,to trial first secondly another that might not be in your polypill.as Monty has speech I know this might be tricky .Thanking you

    ReplyDelete
    Replies
    1. The drug that has plenty of evidence to support its use in raising cognitive function is bumetanide. I think all non-verbal kids should give it a one month trial. 1 mg twice a day is the dose the researchers are using.

      Some kids with autism seem to "get stuck", in that they cannot complete a desired action as if something is inhibiting them. This was the case with my son. I can imagine this effect also stopping a kid from speaking. This issue was solved using Atorvastatin. This therapy was not based on anything in the autism literature, but it works for us and stopping the drug the old habit returns.

      Speech is such a big issue I would start with bumetanide for a month, continue if you notice positive changes and then add atorvastatin for a week. If atorvastatin has an effect it will evident in a couple of days.

      Bumetanide takes longer because it gradually lowers the level of chloride within neurons and can take 2 weeks in some and longer in others.

      So these two drugs affect cognitive function and improving this should move your child towards speech. You can combine this with behavioural strategies like PECS or just lots of 1 to 1, face to face interactions.

      Some people may not have speech for other reasons like rare metabolic dysfunctions. Bumetanide is treating a very common dysfunction, so I would start there.

      Delete
    2. This is very useful This is very useful would it be acceptable to say your poly pill can be all mixed together to give with no interactions.Would any supplements need to be used at the same time .Thanking you

      Delete
    3. In our case there were no interactions. It is best to try each one step by step, rather than start all at once, since not everyone will be a responder to everything. Everything can be mixed togrther. There are many types of autism and so not all people will be responders.

      Delete
    4. Peter I read in one of your write ups on potassium and magnesium is needed to ensure potassium is of benefit.My son the DAN says has magnesium deficiency but there are reactions to the magnesium supplement when given other people seem to have success with magnesium as calming etc I see agitation
      So can not give.
      I would like to introduce potassium 200 mg a day for a 7 year old before introducing Bumetanide .what should one do the doctor was Not interested in having my son tested for levels of potassium again is it a must to give magnesium with potassium and if he reacts to potassium what next

      Delete
    5. If you give bumetanide you are likely to lower potassium levels, but the autism researchers found that many did not need potassium supplementation, since the drop was small. A significant minority did lose more potassium and these people really do need extra potassium. There is far more potassium in one banana than in a potassium supplement. I doubt you will find potassium gives a negative reaction, if it does then use bananas.

      There is a difference between dietary potassium and supplements. It seems that in some people with autism the sharp/fast increase in potassium from the supplement has extra benefit. But you can replace the potassium lost by diuresis by eating bananas.

      So you could always give bumetanide and two bananas a day, until you have found a way to test potassium.

      Delete
    6. Thanking you I will give Somme potassium supplement for a couple of days

      Delete
    7. Peter with regards to bumetandine I have finally received a bottle for my 7 year child its liquid .Will this be okay to use as they are not tablets.secondly The only time
      I will be able to give will be at 5 am in the morning, I have shift work will 5 am in the morning be okay to administer .I am hoping she will be able to go back to sleep .
      Thanking you

      Delete
    8. The only problem is the need to visit the toilet due to diuresis, so be prepared for this. Maybe give it after work? Or get someone else to give it? The liquid should work exactly like the tablet.

      Delete
    9. Peter thank you I remember you saying the effect will be lost if I give it in the evening when I get back from work I have no one to trust with such medicine unfortunately.

      Delete
    10. Morning dosage would be optimal, but you will still get the effect by giving later in the day. It takes 10 days or more to lower chloride levels to the point where you see the benefit. I would make a trial for at least a month to be sure whether it works or not in your specific case.

      Delete
  34. Hi Peter,
    I have used Enduracell's broccoli sprouts for my 11 year old son in the past. They helped a bit, but want to try NAC per your recommendation. When I went on the Enduracell website to order more, it specifically lists NAC as a supplement you should NOT use in conjunction with the sprouts.

    ReplyDelete
    Replies
    1. We have had no problem with NAC and broccoli sprouts together.

      Delete
  35. http://www.miriamjangmd.com/DefeatAutismNow-protocol.html

    I am trying to compare your approach to that of the doctor on the website above. I appreciate any comments to improve my understanding of autism.

    ReplyDelete
    Replies
    1. The DAN approach is well documented and there are many practitioners in the US. The new version are called MAPS doctors.

      I am not a doctor but it is clear that many of the above practitioners are far from scientific.

      If you live in the US, a very intelligent "autism doctor" is Dr Frye at the Arkansas Children's hospital. He publishes many papers. I think many of the other practitioners would lose their medical license if they operated in Europe.

      Autism is highly complex, just read parts of this blog and it should help your understanding.

      Delete
  36. I am the mother of a 20-year-old male on the spectrum. He suffers grestly from eosinophilic esophagitis, reflux, allergies, and keratoconus (a thinning of the cornea believed to be connected to allergies. He clears his throat and is congested constantly and also has trouble swallowing. He has been on multiple medications and has seen the best specialists but nothing helps. I am interested in Verapamil and whether that would help. Do you have any other suggestions?

    Thank you!

    ReplyDelete
    Replies
    1. Verapamil may help greatly, you would know in just a couple of days.

      You could try the Biogaia probiotic, which in my son greatly reduces his allergies, it works from the first dose.

      In addition to the standard drugs to lower stomach acidity (PPIs and H2 drugs) you can also use larger doses of melatonin (like 5mg) this is shown to help GI problems and melatonin is produced in the GI tract, so you are just adding more of what is already supposed to be there.

      There are mast cell stabilizers like cromolyn sodium and ketotifen, but you likely have tried these.

      You could contact Agnieszka, who wrote the guest post on Verapamil. She is very helpful. Her email address is in her post.

      http://epiphanyasd.blogspot.com/2016/03/verapamil-use-in-autism-request-for.html

      She knows a lot about this subject and she is a doctor and she is collecting case studies on people like this.

      Delete
    2. Peter I have stopped everything at the moment since 7 nonverbal year old child is on antibiotics for hpylori.apart from nalcrom and loratadine which helps itching from the treatment
      I know that there is a positive response to bumetandine she is more attentive and as you say foggy .I read a comment recently whereby a mother said her child displayed a few negative reactions .Coming to think of it ours also developed a sensitivity to sounds and some flicking of fingers near the eyes now that we have taken of the bumetandine this has subsided .I cant say its the antibiotics that helped this but will be certain when I reintroduce
      The bumetandine a 1mg tablet crushed works better than the liquid version.2 mg a day brings about a bad reaction.after the treatment for hpylori I am undecided on trialling either statin or diamox .
      verapamil was not successful which is a big shame as I found a reasonable source in the uk.I cannot find a source for Clonazepam which ideally I would have liked to have trialled.Peter does it matter which I trial first and for diamox what dosage would be suggested.
      Thank you

      Delete
  37. Hello Peter, Christine.

    So now we have at least three reports of some kind of minor negative reaction to bumetanide. It seems more a result of increased sensory issues which probably manifest as anxiety on Christine's son because of his age and in the younger one as sensory overload. The causes could be multiple.

    Cognitive impacts remain to be assessed.

    But we can conclude that bumetanide might not be entirely benign.

    ReplyDelete
    Replies
    1. Kritika, some readers of this blog find increasing potassium solves sensory issues, so it is logical that a drug known to lower potassium worsens sensory issues. The solution, in those cases where bumetanide enhances cognition, would be to supplement potassium. You might also say that increased sensory sensitivity is a symptom of too low potassium level.

      Delete
  38. Peter,

    It's not as simple as that though I thought the same thing. My son had potassium levels at the extreme higher end before starting bumetanide. I also supplemented with potassium..to no avail.
    I suspect it's some other mechanism..imbalance in overall electrolyte balance, not just potassium, comes to my mind. It could also be slight physical discomfort.

    ReplyDelete
    Replies
    1. Kritika, potassium channel dysfunction exists in autism and other conditions. We have one reader with Anderson Tawil Syndrome, and she also has autism in her family. She tries to maintain a very high level of potassium. My son' s potassium level was very high naturally, but responded very well to small does of potassium. Clearly you do not want dangerously high levels of potassium. We know that channelopathies are part of autism but will remain undiagnosed. Bumetanide will disturb electrolytes and so for some people this may affect some present channelopathy.

      Some people trialing bumetanide get the side effect of low blood pressure because they did not replace lost fluids.

      So we should be cautious about all drug/supplement intervention. Side effects may occur and not all people can tolerate things long term. This is why it is important only to use drugs that give a big net gain and not use 20+ supplements a day.

      Delete
    2. My daughter had normal potassium levels a month after bumetanide. I tried 200mg of potassium because of sensory issues but it seemed to cause mild irritation. I gave it with magnesium and it took care of the irritation but did nothing for the sensory issues. I stopped it thinking it was of no use for us. Later, reading Agnieszka's comment, I dosed 400mg with magnesium and it has eliminated her hyperacusis, as well as improving many other sensory issues, such as haircuts, readily trying new foods with unusual tastes and textures, etc.

      Delete
  39. Agree with you Peter..completely. And right now giving him just bumetanide plus lots of water and yogurt, prunes and orange. Keeping a close watch and will not go on doing this hoping for some miracle unless I see something really significant.

    Would love to try Picorrhiza sps..it's a standard auyrvedic drug. I would not really put my hopes up high on herbs because Ayurveda may help mild lifestyle diseases and there it may help a little with IBS and other issues. In a latest research the most potent nootropic has been identified as our humble Brahmi. But how much it translates into real substantial improvements in patients with neurological disorders remains as big a question as ever.

    Will surely try kutki, though, as the suggestion comes from you.

    ReplyDelete
  40. I agree with Peter and just wanted to add that in the Bumetanide French trial they checked potassium levels before the treatment and then after 7, 30 days and 3 months as far as I remember - I wrote it from memory, but for sure there were several measurements. Children had their potassium supplement adjusted to the results. One left the trial because hypokalemia could not be corrected.

    I checked potassium level in the same way when started Bumetanide. My son might be exceptional but he needs 4-5 x 470 mg (12 mEq) potassium daily to get his K+ blood level wnl. I consulted this apparently high dose of K+ supplement with pediatric nephrologist and Prof. Ben-Ari as well and got reassured to continue with no safety issues provided he has no kidney disease.

    But it was after I introduced diet and lifestyle modifications when my son got clearly better also in terms of sensory sensitivity - all despite his blood level had been already corrected before. These included: dietary potassium, potassium supplement without carbs to avoid insulin spike lowering K+ blood level after meal and activating dysfunctional potassium channels, low sodium table salt - check previous Tyler’s comment on this, very helpful as well as recommendations for people suffering from hypokalemic periodic paralysis. As complicated as it may sound, it is all easy and comfortable in practice. M. went with all these potassium supplements on a summer camp with no issues for example. I think it’s worth a try.

    ReplyDelete
  41. Peter, Angeiszka,

    When my son started displaying sensory sensitivities on being put on bumetanide, I have him 100 mg potassium as potassium citrate which I upped to 250 mg once a day and then when sensory issues remained unabated, to 100 mg morning and 250 mg evening one fateful day. The next day my son had such a horrible gastrointestinal episode..holding his chest and stomach in pain, screaming, unable to stand straight. It was after i gave him cyclopam that he felt better. And now I have stopped potassium and the sensitivities have subsided although they do rear up sometimes as peripheral vision. So in all likelihood, it's unrelated to potassium and if it is, that will be another cause of worry after my son's experience with potassium. The potassium citrate had a small amount of mg as well. But that episode has really left me shaken as at one point I thought my son is slipping away.

    I do not like the idea of playing with electrolytes too much as I have experienced first hand how drinking excessive water leading to depletion of sodium and probably other electrolytes as well left my aunt with a serious neurological impairment and she never recovered completely.


    ReplyDelete
  42. Angeiszka,

    Could you elaborate on lifestyle and dietary modifications to keep K levels high..low carb meals to avoid insulin spike? And I can't find Tyler s comment on low sodium diet.

    I feel Na levels also have to be kept in mind at least for some individuals. Too low a Na concentration might create problems of its own for some. I do not have a medical background but have done lot of hospital sit ins for relatives.
    .and this is what I always heard the doctors discussing.

    Please give your opinion..

    ReplyDelete
  43. Hello Kritika,

    I am sorry to hear about your son's pain episode. I feel for you, especially having recently been to the ER with my son due to unexplained, severe abdominal pain (resolved already). The good thing is that using drugs discussed in Peter's blog the risk of serious adverse effects is really small if you follow basic safety rules. Well, it is not the first thought you have on your mind when your child is in pain though, at least in my case.

    You are right, it is not all that obvious. What I wanted to say was that in doubt checking potassium (along with other electrolytes) blood level could be helpful. At least some of the concerns can be exluded or addressed when you know the result. If you don't check, you can only guess. Perhaps it's easy for me to say that, as I am lucky to have a child who does not mind blood drawing.

    Did you use liquid potassium or tablets?

    ReplyDelete
  44. Kritika, I did not saw your previous comment before.

    Yes, it's best to have all electrolytes balanced.

    To keep dietary potassium high I found a list of potassium content per 100 mg in foods, unfortunately it's in Polish, and I have it now printed in my kitchen. I don't count details, just choose products that really have high potassium content and my kids like them. This way I found that in our case kiwi is better than banana.

    Also there is a paper by the doctor who suffers hypokalemic periodic paralysis himself:
    http://www.translational-medicine.com/content/6/1/18

    I found it very useful although obviously neither my son nor yours has hypoKPP. According to this paper, high carbohydrate meal induced insulin spike lowers your blood potassium level and "triggers inappropriate activity of mutated voltage-gated ion channels” (in those persons who have such dysfunctional channels of course). The paper says that significant carbohydrate load in banan makes it less useful to raise K+ blood level than potassium supplement. He also advises K+ prophylaxis before carbohydrate meal or exercise, so I give potassium to meals 3-4 times a day. Btw I use effervescent supplement and this way I am sure my son is hydrated well.

    I do not follow any special low sodium diet, but use low sodium/high potassium table salt and this is also one way to keep potassium high, easy to apply. Where I live you can buy such salt in most groceries.

    All in all it’s not really disturbing and the “side effect” is that it is quite healthy diet in general. Your son may not need it on the other hand. My son turned out prone to hypokalemia, so it was necessary to let him use Bumetanide at all. Before I tried these potassium targeting interventions I did not imagine it could be so helpful and easy.

    ReplyDelete
  45. Angeiszka,

    I used the liquid potassium but mixed it in half a mug of water and added some mango juice to subdue the potassiums horrible taste.

    Yes, I am using low Na table salt but mostly will use either rock salt or Himalayan salt for my son's meals as it is considered to have other minerals as well and not as highly processed as the standard table salt.

    I am doing the oranges and kiwis already. But will try to work a way out of possible lowering of K following a high carb meals. One thing good about Indian meals is that it's quite balanced..legumes, veggies, carbs, ghee and spices. But there is always scope for improvement.

    Could you, when you get the time, relate how your bumetanide experience went..in case you can recall the initial response when you started it..and how it unfolded. I have already read your and RG s comments mentioned in the blog.

    Thanks for being a sympathetic ear and your suggestions

    Wishes



    ReplyDelete
    Replies
    1. Do you think that it is potassium supplement that your son reacted to with pain? Was it the only time you gave him potassium?

      Re your question: initial response to Bumetanide in my son might not be typical, as he was still on a very low dose of Valproate tapered down when I started Bumetanide. I saw the distinct mood change the same day and this was probably related to Valproate+Bumetanide combination. Peter discussed low dose antiepileptic drugs effects here before.

      You can have a look at our notes from early days on Bumetanide in this table, previously a food diary recommended by allergologist that somehow evolved into treatment diary:

      https://docs.google.com/spreadsheets/d/1FxzsS_QSAS_X1YNSH-InoxTQt4WqNnFQpAZd-iXE4wk/edit#gid=0

      One can be surprised by the hype about 8 yo greeting a parent coming back from work or counting to two, but it’s the answer for “just what is autism?” question at my house. So writing about Bumetanide response in my son, I describe what happened in a child profoundly affected by “autism”, deemed to be able to have only 1:1 classes at his previous autism center and not progressing.

      My husband was not aware for what I gave Bumetanide, but it was him who wrote “seems like it’s possible to teach M. something” - after 3 weeks on this treatment. This is the best summary how Bumetanide helped our son as several months/years before he had lost the ability to learn any new skills. In short it was Bumetanide which allowed him to attend mainstream preschool class (with aide and IEP) and improved his communication to the point he could tell us about headache, previously misdiagnosed as mood disorder by psychiatrist. My son went hypokalemic (3.1) after one month of Bumetanide use, then I started K+ supplements.

      Bumetanide did not help for migraines in my son and during headache episodes, at times lasting a week or more, his sensory sensitivity increased. That’s when increasing potassium helped. Otherwise some sensory issues (pressing against objects, vocal stimming) disappeared completely on bumetanide, which I did not expect.

      I was lucky to talk to Dr Lemonnier once (thank you Treating Autism!) and I learned that he has been treating some children with Bumetanide for 8 years now. He told me that Bumetanide long term use seems more beneficial than can be expected from the results of their published trial as this treatment enables proper neuronal maturation. So in my opinion, if Bumetanide helps (it does not for everyone), then it’s worth to continue even if there are things to overcome such as potassium issues.

      Delete
    2. Hi Angeiszka,

      Sorry I missed your comment and just saw it while going through other communications on Peter's polypill.

      Angeiszka, I am pretty sure that if not entirely responsible, potassium did aggravate a stomach issue. I had started with NAC and100 mg potassium after observing visual stimming in my son on starting bumetanide. On finding no respite, I upped the potassium to 250 mg and noticed a mild discomfort. To rule out the role of nac here I stopped it and continued with just potassium. Finally, no improvement in his sensory behaviour led me to niece that I need to further increase the potassium. This decision was based on experiences shared by readers and also Peter with regards to potassiums ability to rectify sensory overload. But when I increased potassium to 300 mg, given in two devided doses, the next day my son reacted with severe pain.

      In fact after I stopped the potassium that the peripheral vision became less frequent although it's still very prominent. So if my son's potassium levels go down when on bumetanide and I see continued cognitive enhancements with it, I will have to largely manage it through diet and probably giving supplemental potassium in smaller doses.

      Getting blood works done is not very easy, not as much because of my son getting upset but due to requirement of a doctor's recommendation..I feel so irresponsible trialling drugs on my son without supervision of a doctor. Will surely get the electrolytes assessed once my son completed 30 days.

      Angeiszka, I will go through your detailed observation ..I am so grateful to you for sharing your notes on bumetanide effects on your son with me. It must be so difficult to take out the time to respond to queries and you have two kids and a career. I really appreciate your very balanced suggestions.

      One disturbing observation about my son for the past few days is that he is weirdly running up to all the electrical sockets one by one and staring at the holes. This kind of visual behaviour I have not seen in him ever before. I convinced it's due to bumetanide.. whether it's temporary needs to be seen. I am following Christine advise to me about sometimes letting the child's body adjust to changes and attain a new equilibrium and then decide what is worth continuing.

      Thanks again for your time and concern





      Delete
  46. Indian meals especially, and vegetarian meals in general, tend to be very high in carbs. Legumes have as much as carbohydrates as starches such as rice, potato etc.

    ReplyDelete
  47. You are right RG. It would do my son good if I could cut down own on carbs and add in more of the proteins and vitamins.

    Are you Indian? Don't have to answer it.

    ReplyDelete
  48. I am of Indian origin. I find it hard to digest many traditional Indian foods like legumes and beans and eat them only occasionally. I think you mentioned that you and your son are vegetarians because of your experience with your father's negative reaction to meat. Have you ever tried giving your son meat? My daughter was vegetarian until about seven, at which point I switched her and it was the best dietary decision I made. Her health improved quite a bit including anemia, a tendency to eat ice constantly, and most importantly, rolling around screaming in pain.

    It will be easier to have a more balanced, easily digestible diet if you could bring yourself to give him some meat.

    ReplyDelete
  49. RG,
    My mom has eaten fish and mutton all through her life and has been anaemic and I have grown up loving non veg food and am anaemic. In fact, my ma's haemoglobin levels went up in the past few years as she became really regular with fruits. And this was after non veg meals became quite a rarity because of my father's experience.

    I am a vegetarian by choice and had turned into one long before my father's episode. I am passionate about things that walk and swim and fly and cannot munch on them. I spent the last night thinking about your cousin and thought that is where I too was headed. I have been a painfully shy and a non fitting individual and was rescued only because of my deep passion for animals which my parents thankfully never discouraged. I would routinely bring in all kinds of sick creatures home and the whole family accommodated. Most of you who are whole people cannot understand what how deeply tormenting it is to be coered into fitting in. It just takes away your self worth and leaves you wretched and wrecked. I claimed my strong identity and emotional stability after first having to prove my intellectual credentials. But I was neurotypical. Most high functioning autistics cannot do that. As a society we have to accept individual diversities and rather than making people conform aim to make them self respecting, functional and stable. And I may be biased here, but I strongly feel, if we could somehow get our autistic kids, at least the cognitively more advanced into care taking roles, say animals, it might provide some kind of anchor and meaningfulness into their emotional lives.

    And RG, if I need the feel to add mutton to my son's diet i will do so. Not at all rigid there.

    As usual, thanks for your wisdom.

    ReplyDelete
  50. Peter, Just wondering if you have had to make any adjustments or deletions in your polypill list since your son hit puberty? I am assuming based on some of your posts he would be well in to adolescence now - is he about 14 yrs old?

    ReplyDelete
    Replies
    1. Tanya, he is 13 and a half. Puberty has not so far had any effect on his autism. The polypill did not change.

      This is the time many people with autism develop epilepsy and I had expected some worsening of autism. Our only issues are pollen allergy and milk teeth. The last milk tooth is about to fall out, finally.

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  51. thanks Peter. epilepsy aside - I guess what I really mean is social-emotional issues popping up at this time. This might be too personal of a question - and don't mean to pry. Anyone here with teenagers would love to hear from you. Just curious of other experiences during this unique time of development and certain medicines to avoid etc.

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    1. I think it is people with Asperger's that may struggle as a teenager, particularly in co-educational schools.

      We have had no issues. NT teenagers, like Monty's big brother, worry about what brand their T shirt is and whether they are cool. In our kind of autism we do not need to worry about that.

      Some people with more severe autism who have not had some behavioral therapy as a young child can exhibit what is seen as inappropriate sexual behavior. Taking clothes off, touching other people, touching themselves etc. This is resolvable with a good ABA consultant. No magic pills.

      The big thing to avoid is epilepsy. I think the kinds of treatments we use have reduced the chance of epilepsy, but it would be impossible to prove. My advice would be to treat your channelopathies way before puberty.

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  52. oh the "autisms" - so many different flavors.. I disagree based on our experience - my son just turned 17 and his situational anxiety has increased a bit and seemingly depressive moments. He does not have aspergers has never exhibited the behavior you mention (in fact i know a mom with a higher functioning kid who had some of those troubles at school). tExperience has taught us, if I want more angst and autistice meltdown, then add a behavior therapist to the mix. Some kids learn and respind better in more natural settings and approaches. Wasn't asking for magic pill but wondering about benzodiazepams and the adolescent brain in terms of addiction susceptibility - but you've answered my question anyway - we missed the boat on treating channelopathy before puberty...... Thanks so much for your time Peter. Greatly appreciate your blog.

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    1. Tanya, benzodiazepines at the regular doses seem to cause endless problems and leave you worse off than when you started.

      You might find something no-addictive. Propranolol is used by some people with autism and is also used by actors for stage fright. It may also have other benefits in some people with autism, the trial below was in young adults:-

      Propranolol May Improve Social Skills in Youth With Autism
      http://psychnews.psychiatryonline.org/doi/full/10.1176/appi.pn.2016.PP2b2

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    2. Tanya,

      So agree with you. My son learns best in natural settings..I think we all should first try and exploit every mean that we use to teach a child who is typical..i have seen it working even in some severely autistic kids with intellectual disabilities. But well, there are such huge differences that we cannot have a one size fits all strategy. And parents of kids with autism are one of the wisest and most sensitive community so I think they know best what works for their child.


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  53. Hello Peter,
    Daniel Here, We are wanting to trial Bumetanide on our 3 year old son with autism. he weighs about 32lbs What would you suggest we start with dosage wise? I think the trial used 1 mg twice a day? should we start lower and work up to that? Also is there anything he should not take while trialing this? I don't think i can get a doc to prescribe a Potassium lvl check, should i just feed him bannas, Orange juice etc? Or Should I just use a potassium supplement. I am in the US so I had to order Bumetanide from Mexico under the name Miccil. This is the same thing correct?

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    1. Hi Daniel,

      Not Peter, but Miccil is the same. It was the first one we tried when we started verapamil and it was very effective.

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    2. Daniel, the researchers give the same dose regardless of weight, that is 1mg twice a day. Miccil is the Mexican brand name of Bumetanide.

      I would add dietary potassium as you plan. In our case I added 250mg of potassium twice a day, this itself has benefits in addition to what the bumetanide achieves.

      RG (from the above comment) uses a higher dosage of potassium which makes the sensory issues go away.

      In the US potassium supplements are limited to 100mg. Where I live I buy a 500mg effervescent tablet and split it in two.

      Ideally you would measure potassium in his blood and maintain it at high normal.

      You normally need to wait a few weeks to know if your son is a responder. In our case it was two weeks. The level of chloride in his neurons slowly reduces to a more "normal" level and this takes time.

      Bumetanide is well tolerated but often drugs interact with each other. So if you add another drug you should check for known interactions. Bumetanide is an old drug and so well known. We have used it for nearly 4 years with no problems.

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  54. We started Bumetanide at 0.5mg 2x/day for our 7yo son (22kg). How long do I have to wait to see if it is doing anything? So far, nothing, but he has been taking it for only 2 days.

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    1. Vladimir, it is highly variable. It could be a week or a month. In our case it was about 10 days.

      Make sure your son is drinking lots of water, most people do this automatically, to compensate for fluid lost due to diuresis.

      Add extra potassium in diet (eg banana, kiwi etc) and/or add potassium supplement. Bumetanide will likely cause a loss of potassium.

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  55. Hi,

    Our son started taking Bumetanide .5mg twice a day about a week and a half ago. His biggest gains seem to be social - playing more with siblings and me, doing things to get a reaction. He also seems to have a much easier time with schoolwork....it seems less challenging to him. He is speaking more, and in more complicated sentences...but not as much as I hoped for. I'm happy he is on this medication and I thank you for shedding light on it. My question- if he is showing improvement on .5mg, should we consider upping to 1 mg twice a day at some point to maximize the effect?

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    1. 10 days is still quite early to judge the effect, you may find the effect grows in the coming days.

      The bigger the dose, the bigger the effect up to a point when the effect may plateau (this is what happens in diuresis). As you raise the dose you will get more diuresis and so lose more potassium and fluids. The side effects of bumetanide are caused by not replacing the potassium and the fluids. Loss of fluids causes dehydration and drop in blood pressure.

      Depending on how big your son is, you might consider a higher dose based on the findings from the clinical trials. My son is now 50 kg / 110 lbs and I have moved up to 2mg in the morning and 1 mg in the evening. He started 4.5 years ago on 1 mg once a day.

      You need to do things gradually and to find out if your son easily goes hypokalemic (low potassium). My son does not, but some people have this problem and they are the ones which will experience side effects, if the parents do not add back enough potassium. You need to measure the level of potassium in his blood and maintain it at the higher end of normal.

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    2. Thanks for your reply.

      At what point in time after beginning the treatment did you find the effect plateaued? My son is 74lbs.

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    3. Austin, I think after a month the biological effect will have peaked and your son will have got used to the new way his brain functions. That is the time to judge the effect. Then you can decide if you want to try a higher dose.

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  56. Peter
    Do you have any advice on how to create tiny doses of capsules, pills etc? Since my daughter is still very small I need to divide most medicines that are aimed at adults or older children.
    /Ling

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    1. Ling, on Amazon you can buy micro scales very cheaply. You can then crush a pill and weigh a precise amount very easily. You can even prepare a mixture of different things and store in a gelatine pill, then on the day you need the mixture open the pill and add to food/drink.

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  57. Thanks Peter! I'll check it up! :-) /Ling

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  58. Peter, would you like to comment your latest PolyPill update? I can't remember what you have replaced. Do you give both potassium/magnesium and potassium/bromide now?
    /Ling

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    1. I deleted the TRH agonist, because it is very expensive, has a short shelf-life and it is almost impossible for most people to obtain, because it is Japanese.

      I give a potassium supplement that comes with some magnesium. I give potassium bromide (KBr), because I want the Br-, it also has K+ which is good.

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