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Top Tips - Drugs/Supplements

Regulations vary from country to country, but this list is made up of easy to get hold of drugs that have a scientifically established positive effect. They have worked wonders for my son, and I started out as a huge skeptic. 

Since I am not a doctor, this is not medical advice, just some common sense.


Anti-oxidants

Science established some time ago that oxidative stress plays a central role in autism.

There is one widely available antioxidant that is highly effective. It is called NAC  (N-Acetyl Cysteine) and is available without prescription via the internet (from Amazon for example) or many pharmacies.

The result is very dose dependent.  Some people take time to adjust to it, due to mild stomach irritation.  Most supplements come in 600mg capsules.  Two capsules has an effect, but the effect becomes larger as you increase to about 3g per day (i.e. 5 capsules per day).  You should observe a great reduction in obsessive behaviours within a few days.  Then new good behaviours should emerge quite rapidly.  Speech increases.

To read about this on the blog, go to the list of labels and click on GSH.


Neuroprotection and anti-inflammatory

The research is conclusive that there is chronic neuroinflammation in autism.  The anti-oxidant will contribute to managing this, but an anti-inflammatory agent that can reach the brain will give additional benefit.

This blog has highlighted research to show that widely used drugs called Statins have a secondary effect that reduces neuroinflammation.

The Statin I choose is Atorvastatin, but Simvastatin also looks a good choice.  In the UK Simvastatin is available without prescription.

I use 10mg Atorvastatin.  The behavioural improvement was visible within two days.  New behaviours involving initiative emerge.

To read about this just click on statins in the list of labels.


GABA Neurotransmitter

Research going on for 10 years in France has shown that the widely used diuretic Bumetanide reduces the level of chloride in the brain.  The high level of chloride causes the brain neurotransmitter GABA to malfunction in autism and babies with neonatal seizures.

The effect of taking 1mg of Bumetanide has a dramatic behavioural effect.  It improves the child's ability to control himself.  He appears more "present" and not in his own world, this results in more interaction with his peers and an improvement in mood and a general increase in happiness.  Speech increases.

To read about this just click on bumetanide in the list of labels.


Autism flare-ups  -  over activated mast cell response to allergens

Violent episodes may sometimes be provoked by an allergic reaction caused by so-called, mast cells.  What in a typical child might just cause a runny nose or sneezing, may cause violent/aggressive behaviour in a child with ASD.

A cheap over the counter drug drug called Claritin, acts as an anti-histamine H1 antagonist, it will subdue the allergic reaction within a few tens of minutes.

Many people do not respond to a particular anti-histamine, if one does not work just try a different one.  Your pharmacist can suggest an alternative (levoceterizine for example).  The brand names vary by country.  In theory the most effective should be one called Rupafin, but this is not available in the US.  I expect you can buy it from Mexico via the internet.

If the child complains about creepy feelings on his/her legs this would be an indicator or this type of allergic reaction.  Some parents observe that their child appears to be "itchy on the inside".  This is the same phenomenon, I think it is a mild form of mastocytosis, which is a known comorbidity of autism.

There are other serious behavioural causes of self injury, but if the child is normally well behaved and under self control, sudden outbursts may very well be caused by allergens activating mast cells.  These cells then pour out pro-inflammatory agents that fire up the neuroinflammation ever-present in the autistic brain.   What then follows is anger, aggression and violence.  Read all about mast cell research here.

Do not be surprised if your chosen anti-histamine remains effective for only 4 hours.  You can also use anti-histamine nasal spray or eye drops. The best drops/sprays are likely to contain Ketotifen or Azelastine.  These substances are known to partially stabilize mast cells.

If you have reduced, by still-present problems like SIBs (Self-Injurious Behaviours even with these anti-histamines, then try the other inflammatory pathway (vagus nerve/acetylcholine) which would involve Piracetam or a small piece of a nicotine patch.  This does actually work.



Lower Serotonin Levels 

High serotonin levels are a known biomarker of autism;  lowering them does indeed appear to reduce autistic behaviours.   

You can do this via diet.  Avoid food known to raise serotonin, for example bananas and caffeine.  A low carbohydrate, high protein diet is known to lower serotonin levels.  The Atkins (induction phase) diet and the Ketogenic diet are also known to lower serotonin levels.  You will know if it is working because lowering serotonin increases appetite, your child should put on weight.

The easier way is with a serotonin antagonist like Periactin, often prescribed in the US to underweight children.  Periactin is a first generation antihistamine drug, so it will cause drowsiness.  It is known to be antiserotonergeric.  It is available OTC in some countries.

Read the post on Serotonin here.


Increase acetylcholine levels

The story about acetylcholine is quite complex, and the full post about it is here.

To increase acetylcholine there are various options.  The drug options shown to be effective work by affecting the enzyme acetylcholinesterase.  The two drugs shown to be effective in autism are Galantamine and Donepzil.  These are prescription drugs.

The same effect is possible using a nicotine patch, or even potentially by using nicotine gum.  One quarter of a 7mg patch applied for 6-8 hours is suggested by one US doctor.

The other method, that is sometimes combined with Donepzil, is to give the dietary supplement choline, which is widely available.


High potassium diet reduces sensory overload

If your child with ASD, like most, has a problem with sensory issues like sound, light, smell etc, there is a dietary solution.  Increase potassium in his/her diet - eat more bananas, oranges, kiwis, potatoes etc.  You can also use potassium + magnesium supplements.  If you live in the US, beware of these supplements, they are very weak.  A banana has 500mg of potassium,  US supplements contains up to 100mg, UK supplements are up to 200mg.  Magnesium plays a role as well, it is needed to maintain potassium levels.  I use a cheap French supplement with 500mg Potassium and 150 mg Magnesium, taken half AM and half PM.  Potassium supplements can irritate the stomach, but they do modify autistic behaviours for the better.

Potassium ion channels (like Kir 4.1) play a role in the brain in both ASD and epilepsy.  It is very complicated and still not fully understood, but it WORKS!


176 comments:

  1. Hi, Do you find -Acetyl Cysteine is helpful generally, or particularly for irritation?

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    1. Members of the Autistic Strategies Network (including me) who are experimenting on themselves are using it to ensure good cellular health. I also take a carnitine supplement, which seems to help a bit for calm, focus and concentration. Autistics are generally low in carnitine, and therefore need more meat.

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  2. NAC seems to improve mood and reduce any obsessive behaviours as a result there is more speech and more complex sentence structures are used. To sum up, you should see a reduction in autistic behaviour and emergence of new neurotypical behaviours.

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  3. You said Bumetanide works very well for your son. It is really true? does it lead to lots of urination ?
    Do you think fundamentally, ABA helps or biomedical (drugs) helps.

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    1. Bumetanide certainly works for Monty, all his teachers at school noticed the change. If you give it before school, he will make a couple of extra trips to the toilet, but it does not cause a big disruption.
      ABA really does work, but it cannot change you biologically. The drugs I found are mild and do certainly help. I am not a fan of using any anti-depressant or anti-psychotic type drugs, these have side effects and cause dependence.
      I am pretty sure that 90% of biomedical drugs do not actually work, that is why I decided to do my own thorough research.

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  4. Hi, another thing is that I could find the use of statins for autism in literature.

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    1. There is no research on statins in autism. But there is research in statins and other neurologiocal disorders. I was rather puzzled nobody else had considered this for autism, this itself tells you something.
      Statins are safe and since autism usually equals high cholesterol and therefore increased risk of heart disease, making a short trial cannot do harm. It it works, then decide for yourself what to do.

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    2. With respect to cholesterol, one study found 20% of the ASD kids were in the 5th percentile for total cholesterol and another study on Fragile X found statistically significant lower cholesterol than controls. And of course, we have SLOS, a genetic condition impairing cholesterol metabolism which can cause autistic disorder (symptoms). So, autism doesn't usually equal high cholesterol - the studies have very varying results including no difference, high and low.

      Notwithstanding above, there is clearly a subset of kids who will have very low cholesterol. My son is one of them and for us (in the 5%) and doesn't have SLOS, and for us cholesterol supplementation has been extremely helpful. The right approach would be to test cholesterol in all kids. Even if this is high, I would be quite concerned about using statins as an anti-inflammatory - high cholesterol usually correlates to higher cognitive score in long-term studies in the elderly.

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    3. The studies are indeed mixed, but many people with ASD have high cholesterol. Statins do much more than just lower cholesterol. I cannot tell you for sure why they improve my son's autism. Statins affect the expression of at least 2 autism genes, PTEN and BCL2. They are also known to reduce inflammation. It is very easy to test a child's cholesterol. If the child has abnormally low cholesterol, giving a statin would clearly be unwise. Statins have been shown to be neuroprotective, they reduce the chance of Parkinson's disease and they improve recovery chances after a traumatic brain injury. I was very surprised that they could help in autism, but it worked from the first pill.

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    4. My son with autism was put on a statin for hypercholesterolemia and it had no effect on his behaviors at all.

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  5. First of all, thank you for your GREAT insight into autism. A couple of questions:

    1. Are there any side effects to NAC?

    2. What are your thoughts about using a combination of NAC, folic acid, and omega3s?

    3. Would you consider creating (or updating) a post with regard to a list of the "best" natural supplements for neuroimmune protection in kids with autism -- e.g., blueberries, NAC, etc. Something similar to http://www.hindawi.com/journals/aurt/2012/870391/tab1/

    Thanks in advance!

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  6. Thanks for your comments.

    I have not noticed any side effects of NAC. in my son. In some people, if they start at high doses, they can have some stomach irritation. We did not experience any such problems. It seems that not all NAC supplements are equal. I am using capsules that I open and dissolve in orange juice, so I open them all. Some people and one NAC producer told me that some of the cheaper pills are already oxidized and so will have no effect. You would get an unpleasant smell of bad eggs if the NAC has oxidized or "gone off", but you would need to open the capsule.

    All the B vitamins seem to play a role (including folic acid) so a B6, B9 and B12 supplement should help and cannot do any harm. Omega 3 is good for everyone and it would be nice if it helped autism, but it does not do anything I could detect and the literature would tend to agree with this. Also, some omega 3 (high EPA) are very expensive and the only study that showed a benefit used a very high dosage. It might be better to spend your money on a higher quality of NAC.

    I can think about a post like the one you suggest. Everyone wants "natural" solutions, but what is "natural" ? Most people would assume statins were artificial drugs, but some big-selling statins are actually plant based. Lovastatin's active ingredient is found in oyster mushrooms. I think it might be safer to take the pill rather than a big plate of mushrooms. NAC is sold as a supplement but it is a synthetic chemical, and not "natural".

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    1. Thanks for your reply.

      I do think you are right. I (and I think many others) would truly appreciate your insight with regard to a list of effective natural supplements. What I mean by "natural" are compounds that are not regulated by the FDA and therefore readily available to parents of children with autism that don't have the ability to prescribe controlled substances.

      What about any of the following:

      1. NAC
      2. Liposomal glutathione
      3. Vitamin B12 / folic acid
      4. Folinic acid
      5. Turmeric / other antiinflammatories

      Also -- which brands? There are a gazillion of them out there and the question is which ones are "quality" and which ones are not. Would appreciate your advice.

      Thanks!

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    2. NAC is proven to work (ie raise glutathione, GSH) and is used to treat oxidative stress in other, more seriously researched conditions like asthma. Transdermal GSH creams sound a nice idea, but they are really expensive and is there any proof they work ? It appears that Folinic Acid is being proposed to do the same thing as NAC, ie raise GSH. As for which brand, in the US you have a premium band called PharmaNAC. This is the one used in the Stanford clinical trial. Where I live there is no PharmaNAC, so I use one of the cheap ones. I open each capsule, so I can check that he NAC has not "gone off" since it makes a foul smell. Giving vitamins B12 and B9 is indicated by the science, if you want more GSH your body needs these vitamins. Injecting B12 seems popular in the US, but I found plenty of research showing that a high dose oral tablet was just as effective. I doubt an expensive vitamin pill is better than a cheap one. Just check on the contents. The high dose B12 pills have appear to have a huge dose, but only a tiny amount is absorbed. So why not try PharmaNAC, a high dose B12 and some B9 folic acid.
      Regarding anti-inflammatories, for some odd reason nobody researching autism seems to have read up about statins and neuro-inflammation. If I were you I would check your child's cholesterol level, if it is very high (quite likely) why not ask your doctor about statins? It does depend on how old your child is. In the US they give statins to very young children to reduce cholsterol (and inflammation). In many countries low dose statins are OTC, in the US the FDA keeps rejecting this idea.
      As for bumetanide, it is clear that in the US doctors are giving this to celebrities to lose weight, so again, why not show the autism clinical trial to your doctor. DAN doctors in the US are prescribing some really strong drugs. Bumetanide is given to new born babies.

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  7. Would you be willing to do a post please on the discussion above with regard to the most effective, safe supplements? Thank you!!!!!!

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    1. That is a good idea. I am only able putting on this "Top Tips" page the drugs/ supplements that I know for sure actually do work in my particular case, there are many other drugs/supplements that are written about or even trialed; those ones are discussed in individual posts. I am only going to give my son the ones that are safe, 90%+ likely to work and most important have only very minor side effects. I also believe that only a small number of such supplements should be given; otherwise they will react with each other or give side effects like head aches, stomach upsets etc. I will update this "top tips" page as I find drugs/supplements that pass my test. For now there are not any others, I have some candidates (linked to serotonin and acetylcholine) but I have not yet found the solution.

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  8. very good info, thanks for the article interesting

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  9. Hi
    I was wondering from what age are you able to give these to an autistic child?

    Thanka

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  10. Good question. In the case of bumetanide, the developer of the therapy suggests as soon as possible to minimize the damage. This is likely to be true with all the therapies. Autism does seem to get worse before it stabilizes. So very early intervention may indeed prevent some brain damage. Bumetanide is even given to neonatal babies. Nobody will give you a 100% guarantee, but if you use these drugs remember to adjust the dosage to the child's weight. I would have started much sooner, had I been aware of the positive effect of these drugs.

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  11. Thanks for that.
    I'm from Australia and it seems that you cannot get bumetanide without a prescription here :( , is there anything else like it that has the same effect?
    Also what would be the dosage for a 3 1/2 year old weighing 18 kg/40 lbs ?

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    1. The only non-prescription drug that I found effective is NAC (N-ACETYL CYSTEINE). If your child exists stereotypy/stimming this is a symptom of oxidative stress. NAC is very effective in treating this; you will also avoid a cascade of other problems triggered by oxidative stress.
      A doctor friend of mine gives his son of the same age as your child, 600mg to 1200mg a day of NAC and it stops the stimming completely.
      NAC is a drug (fluimucil) but is also available over the counter.
      Bumetanide is the subject of very serious autism trials in Europe. It is a new use of a very old drug. In theory, if you contact the Australian Drug Regulator, you have the right to ask for permission for your child to access this drug based on the fact that it is being used in clinical trials in Europe. The European Medicines Agency told me to tell people this. The other option is to find another doctor who is willing to prescribe off-label, or just to buy on the internet without prescription and hope it gets through customs.
      The required dosage seems to vary from child to child. The drug either works or it does not, like an on/off switch. It is not the case that it works a bit and then a higher dose works better. The dose used in the trials is 1mg twice a day. My son has 1 mg once a day. I would try either 0.5 mg twice a day or 1 mg once a day. In my son 0.5mg twice a day, did not have any effect at all. If after a month there is no major impact, then stop. Your autism may be a different type. The doctor friend I mentioned found Bumetanide had no effect, in my son it was like turning on the light switch.

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  12. Thanks so much, I really appreciate your blog and your answering of all my questions :)

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  13. I tried to get my little guy's doctor to write me a prescription for bumetanide and she said it had a black box warning and wouldn't do it. I went and looked and the black box warning is a dehydration warning. Duh! But, they'll prescribe Risperadal (ugh...spelling??) without batting an eye. So, now I have to decide if I'm going to backdoor it from Mexico.

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  14. The researchers using bumetanide for autism say it is a very safe drug and I see no reason to doubt them. It is a very old drug used very widely, which also makes it cheap.

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  15. My son (also named Monty and also with autism) tends to favor foods like yogurt, plantain chips, potato chips (and until the last year loved to eat bananas). Just caught up on your blog last night and learned about the potassium benefits, and now I'm wondering if my son has been unconsciously trying to self-medicate. If I add a potassium supplement on top of these foods would he be at risk for an overdose? I want to supplement because honestly he really would eat nothing but peach yogurt and plantain chips every day if I let him, and we're trying to broaden his food horizons. How much potassium do you think your son is ingesting through diet on top of what he receives in his supplement?

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  16. What really matters is the amount of potassium in his blood. In the US a normal range for potassium is between 3.6 and 5.2 millimoles per liter.

    To get the Recommended Dietary Allowance (RDA) of Potassium, 3000 mg for young children, you would need to eat a lot of bananas.

    The risk with potassium supplements is more about stomach problems, since potassium acts as a laxative.

    I was surprised to note that a potassium tablet had far more effect on behavior than a banana, which in theory has more potassium. I think the immediate effect of the tablet is required. You can try this out at home, the most notable effect is reduction in sensitivity to sensory overload (loud sounds etc).

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    1. I was wondering if I could use Care Potassium Citrate Mixture 200ml as a Potassium supplement. My son is not able to swallow pills and this is the only liquid form I can source in the UK. It looks like it's targeting cystitis in women but I was wondering if I could use it for my son? What do you think? As always thank you so much for all the information, help and advise your share. Monica

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    2. Monica, that looks fine. For kids who cannot swallow pills, you can always crush them and add to food. This may work out much cheaper.

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    3. Hi Peter, I thought it may be an idea to report back on how Bumetanide is working for us. My son started about 6 weeks ago and there have been some significant changes. He generally seems much happier and more positive. A number of people have observed this (despite not knowing we have introduced bumetanide). In school he is participating more and appears more chatty. We haven't really noticed an improvement in his cognitive abilities or focus but maybe this will come. We know he has the potential but he finds concentrating really difficult. Anyway, so far so good:-) We will definitely continue. If anyone is looking to source it, I am getting some friends to post it from Spain where its OTC. Thanks Peter for all your hard work! Monica

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  17. I'm following your blog with great interest, as you started your endeavor way before I had the same idea. And you inspired me to give NAC a try, since I had read the researches you mention but was too wary to try. Thank you! It's unbelievable the change and how fast it happened. He is far from NT, but is more aware, with better motor skill and equilibrium, playing WITH his sister and even trying to speak(not much success there yet, but trying is way more than we had before). He is 3yo with regressive ASD. The only downside is that it seems to have a diuretic effect on him, so I'm giving the second dose in the afternon instead of with diner. I'm using the effervescent one, to be sure in case of not working that was the real effect and not a bad batch.
    For reference: Age 36 months, 15kg, 2x450mg daily (always a fresh half tablet to avoid dose uncertainty)

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    1. That is great to hear. I am sure that the sooner you start the better the long term effect will be, so it is good you started so early. I think many people are worried about giving "drugs" to such young children, but oxidative stress has many actions, including damaging your DNA, so you need to stop it as soon as possible. By halting this process at 36 months, the brain still has plenty of time to adjust while it remains plastic.

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    2. I do hope you are right :)
      At least I feel that any behavioral intervention will have a lot more to work with now that he is more present, and probably healthier. We still have a long way to go, but we are better off then we started.
      Cheers!
      J.

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  18. Actually, Bumenatide is a drug you have to be monitored by a physician for. Because of the actions on potassium, with potential fatal cardiac effects.

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    1. Quite right and that is why it is drug and not OTC. As was found in the clinical trial, in some children K+ levels fell and had to so K+ syrup was provided. This was seen by the clinicians as a manageable side effect. It is well known. If you are aware of this you can add K+ to the diet in the form of bananas or orange juice. It is very easy and cheap to check K+ levels in the blood. Taking the blood sample may not be so easy, as I know only too well.

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    2. My son went hypokalemic on Bumetanide, what we noticed after checking his blood K+ level in the same way as in dr Lemonnier’s study (after a week and then every month during the study). This was even exacerbated by a viral infection with diarrhoea, which lowers K+. And I had to try three K+ supplements until I found one which is tolerated and not refused by my son.
      However, after 2,5 months on Bumetanide I counted the numbers in our daily “home-made” grading scale for symptoms and behaviors and compared to the same period of time before treatment, here's what I can see: over 70% reduction of vocal stimming, 55% less uncontrollable laughter, 30% less aggressive behaviors (being minimal even before Bumetanide) and 26% better eye contact. These are our problematic issues, easy to define and count, so that’s why we rate them. What we don’t have in our scale is awareness and cognitive improvement, which is reported by teachers and therapists of our son, none of them knowing about the drug.
      Believe me, monitoring K+ levels or dealing with dehydration is much easier than dealing with severe autism. Your GP will be able to help you with this kind of things (but not with severe autistic issues). Our does and was even quite interested in Lemonnier’s study… for a minute or two :-) Everything, that was done for safety reasons in the ASD/Bumetanide study, is simple to follow and can be done at home or at local pediatric clinic.
      I am writing this to thank the author of this blog for sharing his research (as much for Verapamil as for changing my way of thinking about autism treatment) and just in case some readers will be here hesitating about “experimental drugs” like me half a year ago.

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  19. Hey its Ned again, big fan of your blog. I don't know if you remember me, I'm the the guy with Asperger's in my early 20s who takes the baclofen regularly. I notice you refered to me in a few posts like the one on L-Carnosine and I appreciitte it. Life has been really good lately, with me graduating college recently and being on a stack of supplements recommended by you. I'm always open to your suggestions, they mean alot to me. I tried the Broccoli sporut powder like in your reformatted polypill, its pretty amazing and I thank you for that. Like Monty's experience, it really makes me feel at ease and in the moment and more aware. I alsoI take a product called Methyl-Gaurd which contains the most available forms of b12, folate, and b6. Along with the broccoli sprout powder from Enduracell and Baclofen and I feel much better. I am funally in a great relationship with a great girl and feel much better socially and in life in general. I can't put into words how much your blog has helped me. My stack consits of Methyl-Gaurd (by thorne research), L-Carnosine, Low dose naltrexone, Broccoli sprout powder from Enduracell, NAC, and baclofen. I also got a prescription for clonzepam and am trying to figure out the exact dosage relative to what you give your son. I have 1mg pills prescribed daily and try to take a quarter of that. How do you work the dosage relative to body weight?I weigh 180 pounds? Bumetanide also really intersts me since GABA supplements really seem to help me as well, I feel like that is one of the keys to Autism, especially in in my type. I haven't been able to find any online, except from some really sketchy online pharmacies which seem really unreliable; If you know of a good online pharmacy offering them please let me know. This stack has helped me alot in my personal life and I honestly feel like life has been so much better since trying it. Mindfulness meditation has helped me greatly too. Sorry if this post seems all over the place, but I just wanted to emphasize how great this blog is and how much it has helped me in living a full happy life.

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    1. I am glad things are going so well.

      The equivalent dose of Clonazepam would be 0.13 mg a day. I crush the pill put in a small medicine bottle, add water, shake well and the use a syringe to measure the dose. For Monty one dissolved 0.5mg pill last 10 days. It will take about 3 days to reach a steady level of the drug, since it has a long half-life. I give the dose split into two or three times a day.

      Bumetanide has a greater effect, it is a cheap drug. If you live in the US, the Spanish name is Miccil. Lots of Americans seem to get things from Mexico.

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    2. Does making a clonazepam solution require a special kind of solvent like distilled water,ethanol, or polyethylene glycol? Also should it be refrigerated? I have a few basic tools, but I am not sure if I need a special mixer/stirring device or something like that.

      I am limited on equipment at the moment, but I believe the following should be suitable for me to make a solution of low-dose clonazepam. So please correct me if I'm wrong (I'm terrible at math and chemistry), but I have the following:
      -a 30ml bottle
      -a 0.5ml dropper
      -1mg clonazepam tablets
      -distilled water

      Is it as simple as putting 4 1mg tablets (totaling 4mg) into the bottle and adding 30mg of distilled water? This would give me roughly 0.133334mg per ml (and I use my .5ml dropper to measure out ~0.06667 which should be taken twice daily 12 hours apart). So I would have about 60 doses of 0.6667mg of clonazepam in my bottle?

      Sorry to bother you but I am just bad at conversions and wanted to make sure this is the correct method because this is all kind of confusing to me. Also I read somewhere a while ago that the water solubility of clonazepam is 0.1mg/ml (which would mean1 mg clonazepam could be dissolved in 10 ml water). Is this true? I am wondering if this would mean I could not use a 30ml dropper for 4mg of clonazepam.

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    3. Clonazepam does not dissolve in water, you just get a lumpy suspension.

      So it is better to use something like a bigger 10ml syringe or the device often used to measure out medicines for children. You can get this very cheaply at a pharmacy.

      To be equivalent to my dose:- If you weigh 70 kg you would need 0.05 mg twice a day, if you weigh 90kg you would need 0.064 mg twice a day.

      If you put a single 1mg tablet in your 30 ml bottle and add regular drinking water, you will have a lumpy solution of 0.033 mg/ml.

      My suggestion is to use a larger bottle, say 100ml. You can even get a 100ml kids pain reliever syrup with a measuring syringe included and use that.

      If you can find a cheap hand held frappe coffer mixer, it will fit inside the 100ml bottle. Then when you make your solution you can give a very thorough mix and avoid the lumps.

      If you put the 1mg tablet in the bigger 100 ml bottle you have 0.01mg/ml. If you weigh 90kg, you would take 6.4 ml, twice a day or 13 ml once a day.

      You just keep the bottle in the fridge and shake well before use.

      Due to the long half life of clonazepam, it will take three days to reach the effective level and show any affect.

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  20. http://autism.asu.edu/Docs/2013/Summary_of_Treatments_for_Autism-2013.pdf, last page is really interesting. Do you have any thoughts, Peter? Perhaps new things to try out.

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  21. Thanks for this, I do refer in a post somewhere to a version of this report.

    In the past I found most success with figuring out what I thought should work, rather than what ARI/DAN suggest. I think there are some great ideas tucked away in this report, along with many things that will not help. The final page is interesting, but some of these interventions are highly specific. Only if you have a specific problem with SAMe help, but for those few it should help a lot.

    There are numerous things that do seem to help some people but appear to have no effect on others.

    It seems to me, from what I can tell, most people try these DAN/ARI therapies for a few years and then give up. The same with special diets.

    Since autism does not go away, I would expect effective therapies to be used life long. That is my expectation with the drugs I am using.

    I agree with ARI, "autism is treatable"; but they have missed off their very extensive list, some things that work very well in a substantial % of people.

    For my son, Bumetanide + NAC + Sulforaphane + Verapamil, in particular, are absolutely life changing. They do not appear on the last page of this document.

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  22. Does it matter what is the brand of the NAC? Is there anything specific to look for? The Doctor's Best NAC Detox Regulators is quite cheap (5$) and I wonder if it miss something?
    What do you think about curcumin (longvita), have you tried it?
    Do you think this new Nature's Answer Brocco-Glutathione might be better than Australian broccoli powder?
    Thanks for your answers :)

    ReplyDelete
    Replies
    1. The choice of broccoli is much more important than the choice of NAC. Research showed that most broccoli powder fails to make any sulfurophane, so you just waste your money. There is an enzyme required and it gets destroyed in the processing. The Australian powder does work and I guess the cheap ones probably do not. You need a very small amount, so the larger pack lasts 3 months.

      The cheap NAC can smell and if you cannot swallow the pills and need to open them, NAC tastes bad. The expensive solution is PhamaNAC in the US and Fluimucil elsewhere. This is NAC in a dissolving tablet that tastes good.

      I have not tried curcumin, but many people have tried it.

      Delete
  23. Hi Peter, what do you think about probiotics for stimming and overstimulation? NAC and Potassium might be better?

    ReplyDelete
    Replies
    1. People with autism are not all the same, but NAC does seem to help most types of stimming and OCD. You need it 3 times a day because the effect lasts only about 4 hours. So around 2,000 mg split throughout the day. It should work within a day or two. The effect will be lost as soon as you stop taking it.

      Delete
  24. and thinking about gaba, could bumetanide be a safer and more effective substitute for valproic acid? my son has electrical activity, not epilepsy

    ReplyDelete
    Replies
    1. Bumetanide is safe and it does have some properties that can affect electrical activity. I think that young children with autism who take bumetanide, like mine, may well have some "protection" against developing epilepsy later on. Another good reason to use it.

      I would think it is well worth a try. I would not mix bumetanide with high doses of valproic acid. There are some posts on this blog about using tiny doses of valproic acid with bumetanide; this did work well.

      Delete
  25. now he takes 4 capsules sprinkle, 125 sodium divalproat, this is too much if I mix it with bumetanide, 1mg? I dont think he develops epilepsy but thinking in his hard visual overstimulation could be a posibility in the future, I had written you by the end of last year.

    ReplyDelete
    Replies
    1. I would try bumetanide 1mg twice a day for three weeks. You should see the effect in two weeks, but it may take a bit longer. You should check potassium levels and supplement with K+ if needed.

      Another reader who was using valproate, reduced the dose to a tiny amount (5-10% of the normal dose) and then started bumetanide. She found bumetanide was highly effective in her son.

      Delete
    2. should I start lowering the dose, for example from 1 capsule each 10 days until get to a half capsule 125 mg valproate? After that should I start with : half caps valproate and 1 mg bumetanide twice? Iam afraid when reducing the dose to such tiny amount his behaviour gets worse. he takes it since he was 3

      Delete
    3. It depends if you think valproate may react with the bumetanide. If you are not concerned, then just add the bumetanide. Nobody can tell you for sure. The other reader choose to lower the valproate dose and now no longer uses it at all. If bumetanide works you then would need to know if valproate is no longer needed. There is no easy way to find out.

      Delete
  26. I understand, I will have to take the risk, do you think that bumetanide is less dangerous than valproat, in the long run?

    ReplyDelete
    Replies
    1. Bumetanide is very safe, about 20 percent of people will need to take extra potassium. I think it is a good for long term use. It also gives a big boost in cognitive function, which is most important. Valproate has a long list of side effects, but I expect most people will not suffer them. Bumetanide should improve many of the problems associated with autism - cognitive function, speech, mood etc.

      Delete
    2. Hi! I have finally managed to get hold of 2 boxes of Bumetanide. Does it matter when in the day it's taken? I think after school would be best for my son but i remember you mentioning giving it in the morning. Thanks for being so generous with sharing your knowledge and experience! Monica

      Delete
    3. Monica, after school will also work and avoid problems with toilet visits. You need to keep going quite a long time before there is an effect. It took a couple of weeks in our case but it can be longer. You should add extra potassium and make sure he drinks extra water to make up what he has lost. It seems to work in nearly half of cases.

      Delete
    4. Thank you! I will report back in a few weeks time.

      Delete
  27. Peter, Potassium Chloride vs citrate? Is one recommended over the other ? Why? As always, thanks for this priceless info.

    My daughter is extremely sensory seeking (running/jumping , screaming for fun, pinching ppl and sensory objects) and OT seems to have no effect on her. Could trying Potassium help her ease a bit?

    Thanks,
    Mahesh

    ReplyDelete
    Replies
    1. I use citirate. 250mg twice a day with plenty of water. It is worth a try.

      Delete
  28. Hi Peter,
    Many thanks for your blog,
    My just turned 3 year old was recently diagnosed with autism, we are not sure if it is regressive or classic, he was developing speech very late (like his neurotypical older brother), but had some signs which we missed like lot of running on toes, not responding to name often when he was toddler, but when he went to a new class with louder and bigger kids around 2 years 9 months and also started on steroids for asthma, his stimming - running, sensory issues,occasional vocal tics got pronounced and stopped his little speech and he got a diagnosis, he was ok in the earlier toddler class for about 6 months with just being hyperactive.

    After reading your blog:
    I have started him on 900 mg of NAC pharmanac per day, he weighs like 33 pounds, he has been becoming verbal of late - labels stuff, even
    before NAC, and has stopped vocal tics after stopping day care.
    and have ordered kirkman super nu thera.

    Wondering if i should add suplharaphane as well and vit B12 or folinic acid.

    Thanks for all that you do
    BK

    ReplyDelete
    Replies
    1. The broccoli powder is harmless, but very effective in some people. Your son is very young and if it is autism, it would still be developing, so you could change its course. Since speech is returning soon, it might be something milder. The broccoli powder should improve mood from the first dose, if it works. NAC should be protective to avoid damage caused by oxidative stress, most people are giving it afterwards. B vitamins are also harmless.

      Delete
  29. Hi Peter,
    Thanks for your reply, yes he has been diagnosed a couple of times, and true it is developing, we have been seeing new behaviours since april every week, one day he is afraid of aeroplanes in the air (which he never was),and then next week he is not. He had been flicking his fingers more for last two weeks, and running more..
    His language is coming back but is plateuing, so he said Mama and Daddy two times and then stopped.
    I was wondering about potassium ( for his sensory issues), I read that it can cause issues if there is too much, how are you testing your sons potassium after you give the supplement. I would like to see if that would help for stimming.
    I was also wondering about carnitine from your blog about regression,
    Thanks
    BK

    ReplyDelete
    Replies
    1. Potassium may help for sensory issues, but I doubt it will help with stimming. Antioxidants like NAC, ALA and carnosine should help stimming. Carnitine does help some people a lot, this would make sense it they have some mitochondrial dysfunction.

      Potassium is tested via blood, so you do not want to do it too often. It is good to know the starting level and checking electrolytes is a basic lab test. Supplements are actually very small, in the US they are limited to 100mg, but the recommended daily intake is 3,500g for an adult. To achieve the RDA you need to eat bananas and orange juice. In some people with autism it seems that a spike of potassium like 200mg all in one go provides a calming effect on the sensory problems. You cannot do this all day long, just once or twice a day.

      Delete
  30. Dear Anonymous, Are you sure it is not PANDAS or PANs for your child. Continually changing ocd behavior, anxiety, fears, If you are in the US Stanford University has a whole practice for this. If get the inflammation and errant antibodies -- perhaps lots would go away?

    ReplyDelete
  31. Hi Anonymous,
    Thanks for your reply.
    My Paediatrician did mention PANDAS and then said she was not sure if that was that, but did not test for it. I will call and make an appointment to test for it.
    We are also going for genetic testing, I am in the mid west, at Childrens, need to ask if they do chromosome micro array that is mentioned on the regressive part of this blog.
    Thanks
    BK

    ReplyDelete
  32. Hi Peter,
    We are using NAC right now (450mg twice a day). I will increase to 450 mg 4 times a day and see if it helps. I read to supplement B12 with NAC, do you do that. Yes, 200 mg of K seems preety mild.

    Plan to use Carnosine or Carnitine or ALA if 1800 mg of NAC does not work. Do you know of any side effects of Carnitine or Carnosine.
    Thanks for your help
    BK

    ReplyDelete
    Replies
    1. I am not aware of any side effects. NAC works fine without B12. If antioxidants do not help, it may well be something other than a common autism variant. Oxidative stress is present in about 90 percent of "autism".

      There is no perfect test for PANDAS, it is all subjective.

      Delete
  33. This may be totally off base but If you believe it could be pandas, at your son's age it would be so much easier to manage. At a minimum I I would start with titres for strep both the ASO and the Dnase. My son had chronic anal strep that we never tested for :( and most drs don't know that the treatment is longer for anal strep -- 3 weeks); There is a NIH presentation with a Mass General/Harvard doc who mentions anal strep and the root cause for a lot of pandas. Good luck! MH

    ReplyDelete
  34. I don't know if this is true but the side effects I have always heard from the alternative community is that NAC can stir up gi stuff if you are sensitive to sulfur.

    ReplyDelete
  35. Just wonder if behavioral effect of cefuroxime I saw twice in my son may mean more than he felt better when his stomatitis was healed.

    MH, did ASO/Dnase tests show strep infection in your son? Did you see any symptoms of it? Could you see any long-term effect of 3 weeks antibiotic treatment?

    There is antibody test called Cunningham panel, suggested for PANDAS/PANS diagnosis. It's not included into diagnostic criteria, but seems reasonable. It' very expensive though.

    As far as carnitine side effects, the paper referenced here by Peter says: "An occasional immediate sign of the effectiveness of carnitine in children with more severe, non-AMD complex I deficiencies is hyperactivity”.

    While it is not a real side effect, I think it's good to be aware that hyperactivity may occur on carnitine. Unfortunately I didn't know this when I tried carnitine and extreme hyperactivity discouraged me from this kind of treatment. Actually it’s a proof of response: “hyperactivity stems from increased cerebral energy availability and, therefore, that long-term benefit from carnitine supplementation can be anticipated."

    ReplyDelete
  36. Not sure if I my reply went through so Peter if this is redundant, sorry!
    TO AW-- ASO never showed an active infection, but DNase was always elevated. Read up on Stanford University PANs/PANDAS and there is a large parent listserv where it is very active (latitudes.org). I think if things wax/wane dramatically that is a potential big sign although there could be other things mentioned on this site (allergies, etc). In retrospect, we didn't have big upswing, until it was so dramatic. PANS is about immune dyrsegulation so somehow tied in. We have done Cunningham 3 times and I don't think it was very actionable other than to confirm how significant the issues (e.g. tourettes vs.tics vs chorea). Autoimmune treatments such as ivig, high dose steroids, etc have been effective. Good luck! MH

    ReplyDelete
  37. Thanks MH. There was clearly wax and wane pattern in my son. It was probably associated with mast cell activation and channelopathy, but this does not exclude other things going on.

    ReplyDelete
  38. Hi Peter,
    My son did see some improvement with NAC (currently on 1800 mg - 2* 900) per day for approx 3 weeks, so he started being more present and verbalizing a little more, after that he seemed to have stalled. So I have added l-carnisone 500 mg twice a day for last 3 days. When you change anti oxidant, do you have stop one before adding another.
    He has started lying on the floor a lot, his therapist was saying he is like a noodle, seems to always want to lie down but is better outdoors. - do u know of any thing that might help.
    Thanks
    BK

    ReplyDelete
    Replies
    1. You can use more than one antioxidant.

      I think you will get a better result with 450g of nac four times a day. If you are using Pharmanac, just break the tablet in half.

      Delete
  39. Hi Peter
    I think my earlier post did not go through
    My 3 year old does have some allergy symptoms was trying to decide between quercetin and verpamil
    He has patches of eczema behind knees and dark circle under eyes some times
    Also cheers to Monty and thanks for all your help
    BK

    ReplyDelete
    Replies
    1. I would try quercetin first and also try various H1 antihistamines and mast cell stabilizers. See which one(s) affect the autism in a good way.

      Depending on where you live, Ketotifen and Cromolyn Sodium are worth a try.

      Verapamil may be hard to obtain.

      Delete
  40. Dear Peter can you reply me a few questions please?
    My son is 12 years old,his weight is 60kg stimmings
    1.How dose of NAC can I give him?
    2.-How long?When I stop the improvements will dissapear?That means he has to be taking NAC ALWAYS?
    3.-For his weight how much bumetanida can I give him??1mg once a day?
    4.-500mg k+/150mg Mg half each 12 hours is good?
    5.- the last one:if I put 1mg clonazepam in a bottle 100ml...his dosis is 4.26ml each 12 hours??
    Thanks for all.Waiting your answer.
    It will be very important if you can tell us where to buy the best products.Where do you buy sulphurane?

    ReplyDelete
  41. Here are my response.

    1. I would suggest 600mg four times a day or 900mg three times a day
    2. If you see substantial improvements, then continue, otherwise stop. If you do see improvements with NAC, try stopping for a couple of days and you will see the improvements disappear. Then you know for sure that you have oxidative stress. NAC is a treatment, not a cure, so if you want the improvements you have to keep taking an antioxidant, be it NAC or something else.
    3. 1mg twice a day is what the researchers use.
    4. That is the dose I use, but if you give bumetanide you have to check K+ levels in the blood and add K+ as needed.
    5. The simplest thing is to give between 0.025 mg and 0.05 mg in the evening. The effective dose varies person to person. So if you put 1mg in 100ml that would be 2.5ml to 5ml.

    Bumetanide and Clonazepam are prescription drugs. How you get them depends on where you live and how enlightened your doctor is.

    NAC is widely available and can be bought in sustained release form NAC SUSTAIN.

    I am using an Australian broccoli powder which does seem to produce Sulforaphane. http://www.supersprout.com.au/ This is not an expensive one and you need very little of it, about 2.5ml / half a teaspoon.

    ReplyDelete
  42. Peter,another question:it must be N-ACETILCISTEINA but Acetilcisteina is good too??Is good also in pills or tablets or is better efervescent??

    ReplyDelete
    Replies
    1. Acetylcysteine is also known as N-acetylcysteine or N-acetyl-L-cysteine (NAC). They are the same.

      The effervescent tablets are much more expensive. Fluimucil is much cheaper than pharmanac and they seem to be identical. Both taste good.

      NAC powder tastes bad,which is a problem if the person cannot swallow pills and you need to open them.

      All forms work. NAC SUSTAIN is a time release version which is interesting since NAC has a very short half-life.

      Delete
  43. pharmanac is expensive

    ReplyDelete
  44. I'm going to strart next week.I'll tell you what improvement I can see.I cross my fingers.I hope I can see good things.

    ReplyDelete
  45. Peter:one question.today i,m on my second day of NAC,my son has fever...must I continue with NAC althought the fever'??

    ReplyDelete
    Replies
    1. Stop if you want to and restart when he is better. The fever may mask the effect of the NAC, so you may not see the real effect.

      My son takes NAC 365 days a year, fever or not.

      Delete
  46. Thanks I`ll not stop...

    ReplyDelete
  47. hellow Peter it seems stimming has reduced.I,ll see after the fever if he has or not stimming again.Another questions:
    1.-Can I use NAC +L-Carnosine+broccoli sprouts or is better to make it rotattive?
    2.-After reduce oxidative stress,can I add neuroinflamat as Bumetanida??
    3.- He has sensory problems,can I use k+/mg2+ or is better first make the analisys and if with bumetanida he has k+ low add this k+/mg2+?
    .

    ReplyDelete
  48. 1. You can use all three, but better first check that each one works. Not everyone responds to them, so you have to make a trial.
    2. I would then add Bumetanide 1mg twice a day, it can take a few weeks to take effect. In my son it took 10 days.
    3. The bumetanide will change his electrolytes. It is cheap to measure K+, so I would measure the K+ before bumetanide. As long as the K+ level is not very high, you can safely add a K+ supplement. I use 250mg twice a day. It seems to be the short term spike in K+ caused by the supplement that helps the sensory problems. Eating a banana (800mg of k+) has no effect since it is slowly absorbed.

    ReplyDelete
  49. It's ok.Thanks Peter.Can you tell me what have you get since you began with this treatment?How long ago ?Can you tell your son`s story?improvements
    Thanks for being so kind and compart all your knowledge with us!!!thanks

    ReplyDelete
    Replies
    1. I started with bumetanide nearly three years ago and then added things NAC shortly thereafter as I read the literature.

      My son perfectly fits the description of classic autism. Entirely non-verbal till 3.5 years, then started PECS and ABA. Very slowly developed some speech, no dramatic "recovery". Has had 40 hours a week of 1:1 help for 9 years. He attended mainstream kindergarden then school with assistant but fell further and further behind in all aspects of schooling. Behavior deteriorated dramatically.

      Having started with these drugs, for the last 3 years he has been able to catch up, and keep up, academically with his peers in class (they are 2 years younger than him.

      So he has now become fully "includable". He has the same level in numeracy/math and literacy/spelling/reading as his neurotypical classmates. He still clearly has autism, so he can express himself, read and sing but does not make complex conversation. No more self-injury, hitting teachers/classmates. He plays the piano very well and learnt how to ski. So now he looks more like someone with Asperger's who does not like to talk, but is very happy.

      Delete
  50. Peter NAC has reduced steriotipies in my son a few days but in my 7 day it does,nt work so good.I´m giving him 900 mg three times a day.What more can I try to make dissapear this.thanks.

    ReplyDelete
    Replies
    1. Many drugs seem to work well and then fade a little. You could use a smaller dose, but more often. For example 900, then 450, 450, 450' 450. You could also try adding other antioxidants like carnosine, ALA. I think you can reduce stereotypy but not make it 100% disappear. You can alse use ABA and give some substitute activity to replace the stimming activy with something different.

      Delete
  51. Hi Peter,
    Bumex is working well for us, mostly that he is smiling more and is sitting more with us and playing with us. I think this is the biggest change I have seen since I have started him on a supplement/drug.
    Have you heard about Camels milk, it is very expensive in the US and I will have to have it shipped to where I live, but one area where my son is showing little progress is speech, which they say it helps.
    Also, we were approved for genetic testing, and the genetic dr also ordered some amino acids etc.., are there any medicines that you know of that are actually there if a genetic issue is indeed found, or is it all for record keeping.
    Thanks
    BK

    ReplyDelete
    Replies
    1. Genetic testing does not appear to be as useful as people expect, so best to have no/low expectations. The effect of bumex will grow over time and will help speech eventually come. PECS is a very good behavioral method to promote speech. We started it and within a few months speech emerged. It is best to combine the right drugs with a behavioral program at home.

      Delete
  52. Hi Peter,
    I was also thinking of starting more PECS,we are in the first stage where he gives a card if he wants food.He does do ABA now.
    Did u use a particular manual, I bought a basic book by Andy Bond but it was more general did not have steps to implement. Was looking to buy at PECS manual by pyramid.
    Also, did you have to use a lot of picture cards, I have some but was going to buy a pack of 600 cards.
    Thanks
    BK

    ReplyDelete
    Replies
    1. You can buy the training manual, but it is much better to go on a one day training course. It all becomes very much easier when you see it demonstrated. It is much more than just exchanging picture cards. PECS is very much based on ABA, and so will fit nicely with the ABA work.

      Delete
  53. Our 14 year old daughters previous diagnoses of PDD has recently been dropped, re-evaluated, and named Mild Cognitive Disability with Anxiety and Dementia. This turned out to be a great turn of phrase for us because we began to see and approach her condition differently. To begin with we started look at the similarities between her poor working memory and irritability as more similar to the dementia you would see in early stages of alzheimers than something that could be treated with ABA as we had previously tried. To make our long story short, we found a combination of and high dose of lions mane mushroom with a small dose of uridine and small amount of multivitamin with choline to significantly improve all of her behaviors. We have a child that has only previously shown improvement when she has a fever. Every supplement has ultimately not worked or did for a short time then she regressed again. I wanted to share this with the hope that it could benefit someone.

    ReplyDelete
    Replies
    1. Thanks. Lions mane mushroom stimulates the production of NGF (nerve growth factor). How high a dose do you give?

      In Rett Syndrome, low NGF is known to be part of the problem. Did you check for this genetic syndrome? It almost only ever affects girls. There are some therapies.

      Improving effects of the mushroom Yamabushitake (Hericium erinaceus) on mild cognitive impairment: a double-blind placebo-controlled clinical trial.

      http://www.ncbi.nlm.nih.gov/pubmed/18844328

      Delete
  54. Hi Peter,
    Did you ever try homeopathy or consider it, was wondering as it seems to be more popular in Europe. For my sons case, I was wondering as I am not having great success with DAN doctor, felt like one who we met was quoting every possible reason and a tonne of supplements, what I have seen till now work the best would be bumex, ABA & a healthy diet.
    I have read some very interesting accounts online about homeopathy.
    Thanks
    BK

    ReplyDelete
    Replies
    1. I am really looking at therapies with some scientific basis and typically homeopaths do not tell you what is in their little pills. I think that many DAN doctors are not much different.

      Delete
  55. Hi Peter,
    First of all thanks for all the work you're putting in and for sharing it with us. I just stumbled across your blog last night after the therapist of one of my son suggested bumetanide. I already spent a few hours reading it, but there's so much, it's hard to know where to start!
    In the end I decided to try with NAC and the broccoli sprout (maybe one first to see if any improvement and then adding the other one later on), I just ordered them and I'll keep you posted on the results (if you're interested of course!).
    Maybe there is something you could help me with: the thing is I have two sons on the spectrum. The eldest is 5 and has classic autism, while the youngest is 2 and I believe he didn't have autism from the onset, but slowly regressed after 9 months (when my wife stopped breastfeeding him more or less) (btw eldest is vaccinated, youngest isn't). Having read your entry about regressive autism, I am a bit hesitant on which way to go for both of them (I think NAC+broccoli fits both of them to start with). My question is: is there a test I should do with the youngest to know which way to go? What would you recommend?
    Sorry for asking many questions... and thanks again for this blog!
    David

    ReplyDelete
  56. Hi David. I think even classic autism is slightly regressive and you probably noticed it more in the second child. Regressive autism really refers to children who acquire and then lose skills like speech.

    Knowing what I now know, I would start bumetanide and NAC as soon as possible, to minimize ongoing damage. Oxidative stress causes other dysfunctions; you can halt this with NAC. It looks very likely that treating the excitatory/inhibitory imbalance, with bumetanide, will not only increase cognitive function (and IQ) but will reduce the chance of developing epilepsy/seizures later.

    Broccoli is also a good idea, but it really is cognitive function that you need to consider. What is the point of all that special education and therapy when the child's brain is operating at 50% of its potential? Many struggles like learning reading/writing/math etc will go so much easier with bumetanide.

    ReplyDelete
    Replies
    1. Thanks for the quick reply. I will try to find the bumetanide (I'm in Spain). You do recommend to check the K+ levels though, right? (before and a month later if I understood correctly)
      As for the regressive autism, what we have noticed -or felt - is that the youngest one was developing like a neurotypical (responded to name, perfect eye contact, started saying papa mama etc...) and then it slowly but surely went into autism territory... Whereas the oldest was like this since birth. That's why I was wondering if you thought it'll be worthwhile to test for AMD (if such a thing is possible...)?
      Thanks again for your time and help
      David

      Delete
    2. You can test for mitochondrial disease at a good hospital, but interpreting the results seems to be subjective. Probably best to try a University hospital. You can always have your doctor send a sample to a good US hospital, like Johns Hopkins and get them to do the lab work and interpret the results.

      You should ideally check K+ before and after starting bumetanide. In a minority of people there is a big drop; you just have to take an oral K+ supplement. In some countries they put K+ in the same tablet and the bumetanide. In most people K+ is a minor issue.

      Delete
    3. Hi Peter,
      We started Bumetanide today on the eldest. Extra trips to the toilet before school, his teacher reported that he drank a LOT of water and went again a few extra times to the toilet. I was wondering if the dose wasn't too much? I gave him 1mg and plan to give him another 1mg at 5pm (he's 6 years old).
      We tried Biotin for 2 weeks on both of them with no visible results.
      NAC is still a work in progress, and I prefer to try things one by one.
      Thanks again for all the work.

      PS: where I live in Spain there's a psychiatrist who's piloting the Bumetanide trial locally, his name is Joaquín Fuentes Biggi (I think he did some conferences with Ben Ari too). I was wondering if you knew about him, and if you thought it to be a good idea to try to go and see him for follow up on my kids... thanks!

      Delete
    4. David, people respond differently to Bumetanide. In some people it produces a great deal of urination, in others it is just one extra visit to the toilet. You need to replace the lost fluids, but if you overdo it you will just create many visits to the toilet. It might be best to stay at one pill a day until he gets used to it.

      I think less than 1 mg a day will not have the "autism effect".

      Biotin for us has an effect, but it is a minor one. NAC and Bumetanide had big effects.

      It would be good to see Dr Biggi, then he can check potassium levels. Prior to that make sure your son takes extra potassium, either as food (bananas, orange juice etc) or a potassium supplement.

      Delete
    5. Will 0.5mg twice a day have the similar effect as 1mg once a day. or is it better to give 1mg once a day. Thanks, A

      Delete
    6. I found 1mg once a day much better than 0.5mg twice a day. In the trials they now seem to use 1mg twice a day. I think people respond slightly differently and it is not just a factor of their weight.

      Delete
    7. Thanks Peter.
      Would you be interested with the results of our trials? (I don't want to "pollute" the comments section...)

      Delete
    8. David, please do share your feedback, be it good or bad. That way new readers can get a balanced view. It would be helpful to give some background on the type of autism, so regressive or not, verbal or not, aggressive or not, MR/ID etc. Then people can look for their sub-type.

      Delete
    9. Hi Peter,
      Will do.
      As we start with bumetanide, I was wondering this: you mentioned that during pollen season the effect of bumetanide/NAC was lost on your son (and you found a solution with verapamil -correct me if I'm wrong). My son has a few allergies, a lot of them actually: food, dust etc... Therefore I was wondering if we see no positive effect with bumetanide, it could mean 1) that he is not a responder or 2) that the allergies are "blocking" the effect. Would you agree with that? And if that were to be the case how would you move forward? With verapamil on top of bumetanide?
      Sorry lots of questions...
      Thanks!

      Delete
    10. David, you understand correctly. The allergies in my son not only mask the good effects of those therapies but also create lots of bad behaviours. I would give bumetanide a least a month, before giving up. The more you can control his allergies the better, a good doctor will be able to help you. Look at mast cell stabilizers.

      Delete
    11. Hi Peter,
      Reporting back. A bit more than a month on bumetanide, 1mg twice a day. No effect noted (potassium level seems ok).
      His allergies seem high now, and I will be getting my hands on Verapamil tomorrow. What would you recommend? Continue on the bumetanide and add the verapamil, or stop it, wait a bit and trial the verapamil?
      You asked me some background on my son so here it is: 6 y.o., classic autism, non verbal (started saying his first words last month -before bumetanide), non agressive with some MR/ID but I wouldn't be able to confirm as I don't have a very detailed diagnosis (I'm in Spain..).
      The little one is 3 years old, no official diagnostic yet, but I would say classic autism as well, although I have my doubts if it's regressive or not. Non agressive, non verbal. No MR/ID (again this is my opinion as I don't have a diagnostic yet). It looks like the NAC is doing him some good, but nothing too obvious. We will try to change the dosage and/or stop it to confirm.

      Delete
    12. David, I would trial bumetanide again outside the allergy season. You could trial Verapamil now, I would use 20mg two or three times a day. It has a short half-life, which is why it needs to be taken often. Verapamil seems to have different beneficial effects in different people. For us it cured aggression linked to allergy, yet for others it cured their GI problems. It depends what issues your kids have. At 6 years old we had no aggression. So it may be worth trying now and also in a few years time as they get older and things evolve.

      Delete
  57. Hi Peter,

    Our 3 years old daughter is diagnozed with PDD NOS. I am not sure which kind of supplements we can buy in Belgrade, Serbia. What supplements would you suggest to us?
    Thanks for yout time and help
    Nenad

    ReplyDelete
    Replies
    1. Hi Nenad

      I would suggest to start with NAC and Bumetanide (Yurinex).

      NAC is also sold as Fluimucil. NAC capsules are cheaper but if you open them up, they taste bad, Fluimucil tasted good.

      A reasonable dose would by 1mg Bumetanide (Yurinex) once a day and NAC 600 mg three times a day. Yurinex is cheap.

      If you use bumetanide you need to check the level of potassium in her blood, Ideally measure now and then after two weeks of bumetanide. I add 250mg of potassium twice a day with a cheap effervescent 500mg tablet that you can buy for 2 euros a tube. To trial Bumetanide you need to take it for a month, in our case the effect emerged after two weeks.

      PDD NOS nowadays really just means mild autism. Can she speak? was it regressive? does she have stimming/stereotypy/OCD ? Does she have aggression/tantrums?

      Peter

      Delete
    2. Hi Peter

      Thank you!
      We will definitely start with Bumetanide ( local Yurinex) as well as Fiumucil.
      I have ordered broccoli sprouts powder from Australia and will receive it soon.
      She has started with Carnozine ( 3 mg daily dose) nearly one month ago.
      She doe not speek yet, although we have a feeling that she says "Mom" and "Daddy"" from time to time. She is defintely not regressive and lately shows certain improvement in behavior.
      She is not ponting with her finger ( yet, hopefully). Regarding stimming/stereotypy/ OCD, sometimes she has repetitive blinking and visual staring at light. Often she moves fingers in front of the her eyes.
      She doesn't have slip finger or walk on her fingers.
      Tantrums - sometimes, once or twice per day, when we don't give her chocolate or take away ipad from her.
      Eye contact is very good and we have a feeling it is improving lately.
      In general, she is smiley and loves to play.
      Not approaching to other children although looks at them from the side.
      Sometimes she is playing with her twin sister, but usually she is jealous at her.
      Thanks again
      Nenad

      Delete
    3. Nenad, that all sounds like autism.

      If you introduce picture based communication (PECS), you can give her a method to communicate. This often quick;y leads to speech emerging.

      Here is good video presentation of PECS. There are training courses for parents.

      https://www.youtube.com/watch?v=-Bzli1iC_w8

      PECS is very clever and effective, when implemented correctly.


      Peter

      Delete
  58. Dear Peter please help I dont know where to start? My son 7 classic autism no speech no real understanding if words either. Behaviour is umanagable, screeching a lot, cant sleeps all through the night despite having 3mg melatonin. We are grounded at home due to behaviour issue when out and about. I can get the NAC but dont know goid brand. Son cannot swallow any form of pill so need one I can add to food. Bumetanide I dont know how to get that since it is prescription drug. Do you think he can still get the benefits considering his age. I live in Uk. Thanks looking forward to your reply. A Very worried mum

    ReplyDelete
  59. You can use any brand of NAC. You can open gelatine capsules and add to food or drink, but the taste is not pleasant.

    Bumetanide would help at any age, if that person is a responder. You can buy it either online (very expensive) from an overseas pharmacy, or from a country where it is available in a proper pharmacy without prescription. The closest place to you is Spain. So either you go there, or ask a friend who knows someone there to send you some. There are hundreds of thousand of Brits living in Spain, many are pensioners who would be likely to take this drug anyway.

    I also use atorvastatin, a very similar statin called Simvastatin, is available to adults in the UK without prescription.

    So either go to a country where they some effort to screen for what causes your autism (USA, Canada), contact a leading researcher/doctor in Europe, like Dr Persico in Rome, or try and treat it yourself.

    ReplyDelete
  60. Dear Peter,

    Thank you for this platform. My 5 year old son was diagnosed with Autism shotly before he turned 3 years old. He covered all his initial milestones on time, creeping, walking and even said his first words between the ages of 1 and 2years old. We started noticing changes in him from 18months and above when suddenly everything started to regress and slow down. To the point where he stopped given us any eye contact at all and would'nt respond to his name when called. I am still unsure if he belongs to the category of classic or regressive autism.

    From the age of 3.5 years we started him on ABA. The journey has been really long. But now his eye contact has improved, we can see he knows his environment and understand a lot more now when given small instructions such as ''Go to bed'' or ''Get your shoes'' ''we're going''and a few more. He says a few single words now too and his only long sentence at the moment is ''I want sweet''. I know internally there are many things wrong and that's probably why even though we have seen improvements, they are very minor. About six months ago i started him on a gluten and casein free diet, mainly because he was having major constipation issues and I did noticed that his diet contained a lot of gluten at one point which made his behaviour go from bad to worse. Following the diet his constipation improved as well as his behavior. I am giving him more vitamins, mainly B-12 vitamins.

    I was so happy to come accross your blog, cause it really clarifies a lot. I need to look more into biomedical treatment for him. I also live in the UK and already know my doctors will not prescribe me with Bumetanide. My questions are based on the short summary I gave you regarding my son, would you suspect he is classified within classic autism or regressive autism?
    Also what test can I have him take to confirm he requires Bumetanide or should I just proceed to purchase this online without conducting any tests? Would there be any side affects?
    Also I have been given him B-12 tablets and read in another article that if combined with folic acid, it would have a greater effect. Do you agree with this theory as my doctor also declined me giving him any folic acid due to his age. If you agree that this can be given, what would be your recommended dosage? I am currently giving him the 5000mg B-12 tablets.

    The only tablet I could purchase online is NAC, would you recommend I give this to him too? and if yes what dosage?

    I have tried to purchase Simvastatin online and was asked for a prescription. Can I just get this from a pharmacy or do you know any online service in the UK where this can be purchased from?

    Also if you have any other suggestion of vitamins or supplements that can help mostly in improving my sons's speech, communication and his concentration, that would be much appreciated. He has made amzing progress in his behaviour, he has practically no behavioral issues, just a few which can be easily managed, most of which are typical boy behaviors when he doesn't get what he wants. His social skills have improved slightly, but his major barriers are still with speech+language and communication overall.

    I would really appreciate your advice

    Daniella

    ReplyDelete
    Replies
    1. Daniella, he clearly did regress, but in fact there are many categories of autism.

      I would try 1800mg of NAC split across the day. It should have a very noticeable positive effect, if he is a responder.

      There is no test for bumetanide, you just need to try it for a month. It would be wise to give extra potassium while taking bumetanide.

      Simvastatin was OTC in the UK, under the name Zocor, but it looks like there was no demand.

      So I would just use NAC + bumetanide + potassium.

      If it was regressive autism secondary to mitochondrial disease then you might want to try what Dr Kelley suggested here:-

      http://epiphanyasd.blogspot.com/p/regressive-autism.html

      None are prescription drugs, so it makes like easier. There is even someone who mixes them up for you:-

      http://mitomedical.com/products/

      A good university teaching hospital could diagnose mitochondrial disease via lab tests; but do not expect to get this from the NHS.

      Delete
  61. I was so happy to come across your blog, cause it really clarifies a lot. I need to look more into biomedical treatment for him. I also live in the UK and already know my doctors will not prescribe me with Bumetanide. My questions are based on the short summary I gave you regarding my son, would you suspect he is classified within classic autism or regressive autism?
    Also what test can I have him take to confirm he requires Bumetanide or should I just proceed to purchase this online without conducting any tests? Would there be any side affects?
    Also I have been given him B-12 tablets and read in another article that if combined with folic acid, it would have a greater effect. Do you agree with this theory as my doctor also declined me giving him any folic acid due to his age. If you agree that this can be given, what would be your recommended dosage? I am currently giving him the 5000mg B-12 tablets.
    The only tablet I could purchase online is NAC, would you recommend I give this to him too? and if yes what dosage?
    I have tried to purchase Simvastatin online and was asked for a prescription. Can I just get this from a pharmacy or do you know any online service in the UK where this can be purchased from?

    Also if you have any other suggestion of vitamins or supplements that can help mostly in improving my son’s speech, communication and his concentration, that would be much appreciated. He has made amazing progress in his behaviour; he has practically no behavioural issues, just a few which can be easily managed, most of which are typical boy behaviours when he doesn't get what he wants. His social skills have improved slightly, but his major barriers are still with speech+language and communication overall.
    I would really appreciate your advice
    Daniella

    ReplyDelete
  62. I was so happy to come across your blog, cause it really clarifies a lot. I need to look more into biomedical treatment for him. I also live in the UK and already know my doctors will not prescribe me with Bumetanide. My questions are based on the short summary I gave you regarding my son, would you suspect he is classified within classic autism or regressive autism?
    Also what test can I have him take to confirm he requires Bumetanide or should I just proceed to purchase this online without conducting any tests? Would there be any side affects?
    Also I have been given him B-12 tablets and read in another article that if combined with folic acid, it would have a greater effect. Do you agree with this theory as my doctor also declined me giving him any folic acid due to his age. If you agree that this can be given, what would be your recommended dosage? I am currently giving him the 5000mg B-12 tablets.
    The only tablet I could purchase online is NAC, would you recommend I give this to him too? and if yes what dosage?
    I have tried to purchase Simvastatin online and was asked for a prescription. Can I just get this from a pharmacy or do you know any online service in the UK where this can be purchased from?

    Also if you have any other suggestion of vitamins or supplements that can help mostly in improving my son’s speech, communication and his concentration, that would be much appreciated. He has made amazing progress in his behaviour; he has practically no behavioural issues, just a few which can be easily managed, most of which are typical boy behaviours when he doesn't get what he wants. His social skills have improved slightly, but his major barriers are still with speech+language and communication overall.
    I would really appreciate your advice
    Daniella

    ReplyDelete
  63. Sorry for the repeat, I though my last post didnt go through. Any brand name for the Pottassium? and what would be the best suitable dosage?
    Also what would be the side effects to look out for in NAC, Bumetanide or Pottassium?

    Thank you Daniella

    ReplyDelete
    Replies
    1. I use 250ml potassium citrate twice a day in 250ml of water. Bumetanide is a diuretic so you need to replace the lost fluid and potassium. If you do not do this there may be side effects, but if you do this bumetanide should be fine. NAC is widely used in children as an anti-mucus therapy. If you are histamine intolerant you might have a negative reaction, but you would also be allergic to fizzy drinks and cinnamon. We have used these for three years without any negatives, just big positives.

      Delete
  64. Hi Peter,
    Thank you for all the interesting as well as useful information. My 22 months old grandson has been diagnosed with ASD. It is regressive I think. He had good eye contact and responded to calling but lost them around when he was 11 months. Around 18 months he was put on CFGH diet and then few words are coming but they are not functional. No OCD and no aggression. He is always moving around. No receptive and no expressive communication. Very very cranky. Poor eater and poor sleeper. Cries a lot. He has asthma. He is on supplements Ca, Mg, Zn, Multivitamin, Co enzyme Q10 and L-Carnitine (mitochondrial dysfunction metabolite high in Urine OAT). Also Oregano and mint oil drops. This month he started ABA-VB.
    Is he too young to start the following?
    NAC seems to be a good idea for him. And so is broccoli sprout.
    Periactin also seems ideal. Serotonin metabolite is high in OAT. It improves appetite and helps to put on weight (he is underweigh and not thriving for the last one year and poor appetite). Will it also help to control asthma? My question is how long we can use it?
    Regarding Bumetanide or Diamox my grandson is already underweight. Will it affect this more?
    Regarding Statin his cholesterol is normal. Report says he is 3.5 optimum <5.0. Any other idea for neuro inflammation?
    Ketotefin and Claritin also are weight redusers? Because appetite and weigh gain are big issues here.
    What about LDN?
    Neurotransmitter metabolites for catecholamine and dopamine are also high. He craves salt. He is given adrenal cortex as support. His active folate and Methyl B2 are very high in his recent blood test. May be he has CFD?
    Any suggestion? Thank you.

    ReplyDelete
    Replies
    1. The most well supported interventions would seem to be Bumetanide and NAC. Since you are doing lab tests, you might as well measure GSH/GSSG this will tell you if there is oxidative stress. If there is oxidative stress, this can be reduced (eg with NAC) and many benefits should follow. There is no test for Bumetanide, you just have to try it for a month.

      Some supplements can/will make things worse. Calcium can make things worse, Zinc can make asthma worse etc.

      Very many people give melatonin for sleep. It also seems to have other benefits at higher doses. Melatonin is an anti-oxidant.

      If you control his asthma, this will help control his autism. Some asthma drugs like montelukast and theophylline MAY also give some secondary benefits to his autism. This you should discuss with a mainstream pediatrician, so to choose the most beneficial asthma+autism therapy.

      In my son Periactin had no effect on appetite. One reader had great results (both appetite and autism) from a small dose of Remeron, which also increases appetite via effects on H1 histamine receptors in the brain. Ask your doctor about a very small dose of Remeron.

      Questions about use of drugs you need to ask your doctor. I can only comment on the public research and my experience of one child with autism.

      Given he is not even two years old, I would not get carried away with supplements. It will be hard to know what actually is effective and it is very easy to add so many things you actually make the situation worse.

      Delete
    2. Thank you Peter. My son lives in London and he is searching (very difficult) for a pediatrician who also treats ASD for my grandson. The med maps physician we are consulting prescribed alphalipoic acid. Is alpha lipoic acid a strong chelater? I have heard that many use it in Andy Cutler protocol.

      Delete
    3. Alpha lipoic acid (ALA) is very similar to NAC, both are thiol antioxidants. Antioxidants to a greater or lessor extent are all chelators.

      My personal opinion is that a great deal of nonsense is written about about chelation, heavy metals and autism. It fits the agenda some people already have.

      People with oxidative stress (this can be tested for) will benefit from antioxidants like NAC and ALA. Most older people have oxidative stress and most people with autism have oxidative stress. Oxidative stress will trigger other problems. People with diabetes and COPD for example benefit greatly when their oxidative stress is treated with ALA.

      I doubt you will find a pediatrician in the UK to treat ASD. They were taught at medical school is is untreatable.

      US doctors of the DAN/MAPS type do not seem to have read about bumetanide. Bumetanide is being developed as a mainstream treatment by French researchers, but the drug has been used for decades for other purposes. That is the one to try.

      Delete
  65. Hello have you looked into nardil and its metabolite PEH which inhibits gaba-t? Apparently that has a great effect on social anxiety.

    https://www.reddit.com/r/Nootropics/comments/2ptpbr/peh_the_greatest_anxiolytic_youve_never_heard_of/

    Sadly people have tried to synthesize the metabolite but it causes explosions so there is some hold up.

    I'm looking into getting clonazepam, but it is going to be SO awkward to explain it to my doctor. Would a GP even know about excitatory/inhibitory balance and how it relates to cognition?

    I'm experiencing hyperexcitability on my right side along with some signs of autism and chronic fatigue. My head feels like it is tingling and pulsating on my right side, sometimes that is just me feeling my pulse along my cranium... my shoulder chest and pelvis is tense and spastic on my right side. I can't spend a long time working / doing boring things / driving or I get heart rythym disruption, extreme fatigue, brain fog, lack of awareness of my surroundings etc.

    I respond well to lavender and phenibut. They give me great energy, less awkwardness, and a great boost to mental clarity.

    I probably have either tumor/scar tissue/MS/viral infection of nerve. Everything other than what a neurologist tests has been "ruled out", at least as far as my local doctor has the capability to rule out.

    Sadly both lavender and phenibut have bad withdrawal periods in which my fatigue is worse and I can barely get out of bed. Lavender has slow tolerance and slow withdrawal while phenibut has fast tolerance and fast withdrawal.

    I notice you mention clonazepam stays constant, so hopefully it works better in this aspect.


    It's gonna be awkward as can be trying to get my doctor to give me clonazepam. I'm just gonna have to come out and say I respond well to phenibut / lavender and say "I'd like to try some more anticonvulsant/antianxiety medications, and I saw a website that suggested .025 mg clonazepam as a sustainable drug for an excitable brain". I just hope I don't have to reexplain that "brain being excitable" isn't the same as having an "excitable personality"...

    Perhaps if my brain was developing with the conditions that I have now, it would be fully autistic. My problems started 3 years ago and slowly have been getting a bit worse.

    ReplyDelete
  66. Hi Peter,
    my son is 3 years 10 months and non verbal.he was diagnosed at 2 years. Since then we have been following gfcf sugarfree diet along with restriction to other food items as per FIT. We started therapy during the same time. Improvement is there but not much. He is still non verbal , less eye contact and focus. I doubt he has classic autism as his milestones
    were delayed by 1-2 months and till 1.5 years he was only imitating 2-3. Now he is totally nonverbal. We have been giving omega oil. I started biomedical last year giving individual vitamins b6, b12, glutathione,mg cream, calcium but then stopped after his behaviors got worse.now again I have started biomedical after doing blood tests and oats. Started with b12 shots.his mtfhr is positive. Should I start with multivitamins. Coq10 is also an antioxidant. What should I do...start coq 10 or MAC.

    ReplyDelete
    Replies
    1. There are no easy answers. Based on what is most likely to work, you would trial Bumetanide for a month and then NAC.

      Some vitamins/supplements will make some people worse, so you need to try new things one at a time.

      If you live in the US, getting tested for mitochondrial dysfunction at a mainstream childrens hospital is a good idea. This has a solid scientific basis and is treatable.

      You can also rule out known genetic causes (fragile X etc) and treatable metabolic dysfunctions. These dysfunctions can lead to autism, not just ID/MR.

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

      Delete
  67. Dear Peter we cannot source a liquid of verapamil how would we divide up a isoptin verapamil40/120mg/240 tablet.we were thinking of giving our 6 year old son 20 mg twice a day. Thank you larrie

    ReplyDelete
    Replies
    1. You can use a pill cutter, or a sharp knife, to cut a 40 mg tablet in half. Then crush it and add to food or drink. Use a standard tablet, not a sustained release version.

      Delete
  68. Most appreciated Peter

    ReplyDelete
  69. Dear Peter
    Please would you kindly tell me the brand of PEA that you use would you confirm why you use it and if it is effective thank you

    ReplyDelete
    Replies
    1. PEA has many interesting properties, but in our case it did not have a noticeable impact so we do not use it.

      Delete
  70. Hi Peter
    We have appointment with Dr.Rossignol next month for my 28 months old grandson. Apart from 24 hour EEG and Mitochondial dysfunction I am not sure what tests he will be ordering. Can you please suggest some relevant tests we can ask them to do?

    His symptoms are unawareness, not responding to calling, eye contact at his will, poor communication, poor receptive as well as expressive language, poor eating, racing thoughts (constantly saying something like cat, peppa pig, car, jump etc) restlessness, high irritability(crying), moderate anxiety in crowd and wheezing.

    Selective attention and focus(good at zig saw puzzles).
    Very affectionate and social even with strangers. Good visual memory(bit hyperlexic-even at 2 years can read alphabets, numbers up to 20 and can match simple words to pictures). Can label a lot of objects but no conversation except a few words like up, water, please, open, garden, swing etc.

    He was born in UK . Full term. Normal pregnancy. Prolonged labour. Maternal fever. Pathological CTG. emergency c-section. Baby born in good condition. Apgar score 9. Positive blood culture for enterococcus faecalis. Asymptomatic. 7 days in neonatal ward. Vancomycin then gentamicin and amoxicillin through IV. LP done. CSF blood stained and negative.

    Then Colics. Mild reflux. Excessive crying. Poor sleep. Always bloating. Hyper sensitivity for sound. Cried when changing clothes. Fed well. 3rd month 1st vaccination. Feeding became a struggle. Only sleep feeding. In spite of these struggles he met all milestones. 10th month he had measles vaccination. Then gradually he lost eyecontact. No response to calling. Became hyper. Started hand flapping, spinning wheels. Pointing and words did not develop.

    When he was 20 months we consulted a nutritionist and did stool test, IGG food sensitivity test, urine OAT, vitamin D test, iron test and methylation pathway profile. started ABA-VB, CFGF diet, digestive enzyme, B complex, mito spectra, magnesium, zinc, B12 injection, adrenal cortex, and probiotics Saccharomyces boulardii, Prescript assist and SECURIL. At 2 years diagnosed as ASD. Thyroid, cholesterol, LFT, creatinine and blood count normal. FRAT negative.(Consulted Dr.Rameakers two weeks ago. He advised to give milk for three weeks and then to do FRAT again. Not decided yet.)

    Gradually there is some overall improvement. Now he sleeps whole night. No more stimming and crying to sound. Bloating and eye contact improved. Pointing, imitation and words are emerging. But the core symptoms remain. 95% he ignores what we say. Rarely he shocks us by understanding perfectly.

    Periactin makes him more hyper. NAC started wheezing. Verapamil seems to give small boils. Tried all separately. Will try again after some time. Started .5mg bumetanide 2 days ago. Will wait and see. Nutritionist says to stop supplements one by one and watch. Will do after seeing Dr.Rossignol.

    Sorry for the long mail. Would appreciate your suggestion. Thank you.

    ReplyDelete
  71. He is still very young. It might be better to give 1mg of bumetanide to be sure of giving it a fair trial and keep with it for a month. If he is a responder you will notice that the "fog has lifted" and pays more attention to what you say.

    While Rossignol might not approve, I would try the Biogaia probiotic which really does seem to improve many people's autism, from the first dose. It comes as a surprise since you would not expect a bacteria to help.

    In the US they like tests, so I think he will suggest plenty. Ideally you would do whole genome testing, but this is still experimental and often they miss things. Also the interpretation of the results can be less than perfect. So you have a chance that you will learn something useful, but it may be an expensive exercise that tells you nothing.

    ReplyDelete
  72. Thanks Peter. We plan to increase bumetanide to 1mg after 10 or 15 days. I am following the discussion of Biogaia probiotics. Is it only helpful to the symptoms of social aspect or the improvement is broader?
    Regards,
    Shyamala

    ReplyDelete
    Replies
    1. The Biogaia seems to have very different benefits in different people, so you cannot say it is good for social aspects or speech etc. It is simple to try and the response comes the first day.

      Delete
  73. Hi Peter,
    We are going for Chiairi surgery for my son, he just turned 4, we were thinking of it for about 8 months. But his doctor thinks it is severe enough that it may be causing some of his issues, his size is 14mm, just wanted to post since I posted here originally.
    Thanks
    BK

    ReplyDelete
    Replies
    1. Good luck and do let us know he gets on afterwards.

      Delete
  74. Hi Peter,
    My son got tested for Igg (ELISA) and IGE (Immunoglobulins) recently, his IGG had high allergy for a lot of stuff, where he had IGE for wheat, milk and strawberries. Our Ped was saying only IGEs matter. I was wondering if you have or other users have done allergy tests, as my son has asthma, eczema as well.
    What puzzled me was the number of items he was allergic to as per the report
    Thanks
    BK

    ReplyDelete
    Replies
    1. Hi BK, many clinicians regard IGG allergy tests as lacking in scientific validity, in that they give false results. So it would seem best to forget about the IGG results and assume only the IGE results are meaningful. Allergy testing is a big business and it does not seem to be regulated properly.

      Delete
  75. Dear Peter,

    I'm wondering if you've tried neurofeedback for Monty. This study is interesting.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3581984/

    Wondering if this and neurofeedback at large is worth investigating.

    Thanks for all the great work.

    ReplyDelete
    Replies
    1. I have not tried neurofeedback. It seems to be mostly used for ADHD and mainly in the US. Some think it works and others think otherwise. I would have to say that I don't know.

      Delete
  76. A new one people are using is LDI/LDA therapy for certain types of autism.

    ReplyDelete
  77. Hello ... do you think making my son eat Potassium high level food such Banana or Kiwi , or Coconut water will help as alternative to supplements ?

    ReplyDelete
    Replies
    1. Eating those foods is a good way to maintain a higher level of potassium, but some of the benefit seems to come from a rapid increase in level of potassium, which you get from a supplement. Potassium from bananas is very slowly absorbed, some people say kiwi is better.

      I uses bananas, kiwis and a supplement.

      Delete
    2. Thanks for the feedback ... My son is 8 years he had completed 30 hours of ABA a week age (4-6.5) ... he is fully functions on his own ...the only problem is i have is they are loud FITS (no longer Tantrums) they occur out of no where and far in between some weeks we might get 5 of them and disappear for 2 months and then back again and then disappear for 5 days or few months and again always in school never ever at home or in an outing with me or family... His fits are (3-10 min avg) of anger crying loud (not violent), last year it used be more anger and he used to reach to others to bite, its been 15 months we been getting them on and of every few months but they are only Crying loud& screaming and when he done he feels horrible and bad for what he has done ? what your thoughts of best treatment , he is sociable speaks 3 languages extremely intelligent and had unbelievable memory, very sensitive to people looks or feels very thoughtful and caring and loved by many.... his defecates are: 1/His expressive surprisingly language is not as fluent as his receptive. but he is improving, He can write properly but when talking sometimes the sentences are not greatly structured as his knowledge of the language 2/ He has anxiety when his teachers doesn't put him first in line or answer first question ( but this various some months he has no problem and some months its big issue for him ). 3/ He cannot be in conflict situation seeing people argue or hearing babies or kids cry ... he goes on panic mode and pale? ...just by hearing that what your sense could be great to start on his ..I bought PHARMANAC from amazon waiting to receive it this week ? feeding him Banana and Omega 3 ? but now the more i read your Blog i am starting to think it could be the Mast cells ? would love to hear your thoughts:)) many thanks and so grateful for your blog & hard work...

      Delete
    3. There must me a behavioral or biological trigger to his screaming fits.

      You might want to rule out any kind of seizure related issue by having an EEG test, this is very commonly carried out on people with autism.

      If you keep a behavior diary you might be able to link the fits to some preceding event which acts as a trigger.

      Any kind of inflammatory process, which might be related to allergies, bowel inflammation (IDS/IBD), even teething can cause flare-ups in autistic behavior. You will need to do some detective work to find if this is the problem.

      Since your son is fully verbal he may be able to answer your questions to explain what is triggering the fits. He might be better able to given a written response. Many people with such behaviors are not sufficiently verbal to give any such help.

      Some people with autism have a high level of anxiety which leaves them vulnerable to losing control after only small provocations. There are many possible therapies for this ranging from increasing serotonin slightly (small doses of Prozac or 5-HTP), propranolol etc.

      If your son’s case is more like Asperger’s he might respond very well to Baclofen.

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    4. Thank you so much for your kind feedback. I am ruling our the seizure , i checked out the symptoms and they do not match his Fits ...as they r normal Fits but loud .. was wondering if you know of any Natural alternative to Prozac ?

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    5. and do you think Potassium treatment and NAC could be helpful in his case ?

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    6. The closest supplement to Prozac is 5HTP, you could try 25mg or 50mg. Many people with autism use it. Small doses work well for some people, large doses can make things worse. Potassium and NAC are worth trying, but try them separately so you know what causes which effects.

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  78. To Anonymous- The situation with your 8 year old son seems similar to what occurred with a child I knew that fit the PANS. She is a very intelligent girl and excels in Math. Certain things would make her have those behaviors you describe like your son. She has a very sensitive response to sensory stimuli like that and sensitivity to illness, and foods. She would have extreme behavior disturbance if she was ever ill. It was debilitating because the behavior inhibited her ability to continue in school at times. She was in a regular classroom setting. She has a lot of allergies, intolerance's to foods the family found out. While she was never diagnosed as having PANS when I look back I felt like she had a version of it in regards to illness and other neuro-physiological reactions as well. I believe that you are on the right track in regards to Mast Cells though and you should continue with that.

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    1. Thank you so much ... yes there is a cold in the house that has been going on ...i wonder that whats causing him to react with so many fits the past 4 weeks ... i just cant get it he was great in school (regular class) for 4 month with very minor issues and past 4 weeks every 2nd day we will have 1 fit for different reason ( today it was we arrived late. 2 days ago it was because he didn't get a mark , 5 days ago because his friends helped cleaned the GYM cones not him ...it just changes ...and some other days they are just perfect )...i ordered PHARMANAC , been feeding Omega3 and Banana and Kiwi but i don't see any difference ...for Mast cells ... should i buy what in your opinion cLariton or NeuroProtek ?

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    2. BTW i never heard of PANS but thank you now that i looked at it . it very similar to what he is experiencing ....wounder if the mast cells will help? they seem related somhow ...i will defiantly try it ...

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    3. If it is cold it may not be mast cell related. If his fits are mainly in school I would try 200mg of ibuprofen just before he leaves home. Neuroprotek is very expensive and does not seem to help many people. For mast cells verapamil can be very effective and cheap, but it is a prescription drug. You could try standard H1 antihistamines like Claritin.

      I think you have an inflammatory response to a viral infection and this lowers his ability to cope with stressful situations. I think ibuoprofen may well help, but you should only use it for a few days. Do not use acetaminophen/Tylenol this is not anti-inflammatory and may actually make things worse.

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    4. Cant thank you enough ... for all your advice... will keep u posted with progress

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    5. To Anonymous, Peter is correct in his distinction between inflammatory viral response and mast cell mediated responses and the use of anti-inflammatories. Sometimes it seems that children who have PANS can have both or one and not the other. The child I knew of had mast cell mediated behavioral responses and inflammatory mediated viral responses. If it is a virus the body is becoming inflammed to fight the virus by releasing pyrogens. In some children with PANS it is this inflammatory response that seems to cause a reaction that leads to the behaviors/fits. Mast cells can cause inflammation but it is a different physiology than the viral immune mediated type. But it is the inflammation in general that is triggering the behaviors it seems. Really, I would try to create a diet to reduce inflammation for him as well to decrease the inflammation. Finding a way to look at biomarkers of inflammation that are accurate is very important. A lot of Immunoglobulin testing can have false positives. The reason I bring up diet is that it is a component that can be maintained on some level to keep that inflammation down over the long term. Some doctors have a protocol and MAPS and DAN doctors seem to have the same sort of ideas which I don't entirely discredit but then there is the reality and what you have and what you are living with. Honestly, though you can do a little at a time and get there. I have seen big changes when people change a few dietary things. Ultimately finding out what is causing the inflammation is so helpful. Try to see if you can find key biomarker inflammatory pathways when doing any lab work. I knew another family that used antihistamines and it helped with mast cell inflammatory type behaviors as well. They just used the antihistamines. In both approaches I saw improvements in behavior. I think it is helpful to have antihistamines, and anti-inflammatories on board while your trying to figure out what is going on with allergies, inflammation,etc in the meantime.

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    6. I was thinking to keep a diary of his food intake ...for about month and check if there anything new that caused it ? maybe that could works ?

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    7. Its a good idea but keep in mind that sometimes eliminating one allergen can take some time to see results depending on how the allergen effected the body. For example, when i eliminated high glutamate allergens it was an immediate decrease in the frequency of seizures. Now when I eliminated casein protein, I did not notice a change in eye contact and speech changes for a month. So it depends on what the allergen did internally and how it effected things. And.........eliminating casein can be difficult I am not going to fool you it is an addicting little bugger for some to stop consuming but in my case my son was not so attached to it so it was easier for me to do it. Not everyone has the same allergies and not a lot of doctors fully understand the environmental triggers to what is going on with your kids. At least the geneticist I spoke with did not seem to understand environmental triggers. So you have to be your own detective, your own scientist, and collect your own data on your kid. For the diary try to find an accurate way to document. Also, see if there are any other things that are triggers. Pay attention to bio-rhythms, seasons, other environmental contaminants and responses in your child. Some of us live where we have winters that keep us out of the sun. The sun is so very healing and eating chlorophyll plants and going in the sun can help our bodies make its own COQ10. The biological way we get D3 from the sun can help our bodies in ways that are miraculous. EMF plays a role in the sunlight/D3 and NO process that negatively impacts our biology....I know it sounds weird but I just posted a link on here explaining it all.

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  79. I kindly ask you to give me your opinion about Kids Attention Gold.from natural well being.. lots of great review of this company i have been using there stiff for my hair and its really good.

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    1. You would have to try it to see if it helps. I would suggest trying it yourself before giving it to your child

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  80. Also sometimes people write about something called PANDAS and PANS is similar its whether or not you are having the response due to strep vs having due to another inflammation mediated response process. So when reading about PANDAS note the treatment similarities. Sometimes bacteria and viruses like to keep themselves tucked away in biofilm so targeting them under that layer helps too.

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    1. Yesterday we had a very hard day ..we started with him not reaching school on time and we had a major fit ...i took back home because he looked drained... I am thinking ADHD with ODD is more likely to fit his pattern of behavior ..

      I gave him Advil today before school and been giving Omega 3 and Kiwi and Banana. i still haven't received PharmaNAC ..i will go to pick up some anti histamine (clariton) maybe find some natural Antihistamine to give him.

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    2. Quercetin is a natural substance that may help. It is inexpensive and has genuine anti-inflammatory effects.

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    3. Hello Peter -- How long do i give the clartin for i used it for its been 2 days and i see significant aggregation reduction i am truly impressed... he by far much less fussier or less frustrated ... how long can i continue using it the clartin effect is 24hours ...as written on the box.

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    4. People do use Claritin every day long term and in some conditions at a higher dosage. Some people find they respond better to particular anti-histamines, so you might try different ones and then choose the one that gives the best result.

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    5. No harm to use it every day ?

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    6. Also should i use PharmaNAC or just weight out ?

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    7. PharmaNAC is expensive, but child friendly. The NAC gelatine capsules also work. My favourite is NAC Sustain, but they are big to swallow.
      Ask the Pharmacist about Claritin. Some people get adverse effects to all kinds of things, so everything has some risk.

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    8. Thxs .. what i'm impressed with the use of Claritin only Day 2 ...he immediately stopped being stressed and seemingly calmer ...taking things more calmly than he usually does... reading your blog you mentioned Ketotifen
      as use ? should i try both together?

      I already purchased the PharmaNAC but if Antihistamine is working do i really need to use it ?

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    9. In most people with autism, several different things are nor working quite right, so they benefit from multiple interventions. Always try one thing at a time to confirm if it really helps. So first figure out the antihistamine/mast cell issue, then you can see if oxidative stress (NAC)is an issue.

      NAC would show effect the same day if oxidative stress was a problem.

      Ketotifen can take a few days to take effect.

      Ketotifen should in theory work better than Claritin if there are mast cell issues, but that is theory. You would really use Claritin or Ketotifen unless you have a severe problem, in which case there would be lots of non-autism symptoms.

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  81. This is a very interesting blog that explains a lot about sunlight and NO in great detail and the interaction of EMF and other factors in D3 process.

    https://www.jackkruse.com/biohacking-time-with-methylene-blue/

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  82. Please could you comment on anal strep. My daughter got treated for 10 days. But rash came back and after swab , was negative. However, I have read that treatment should be longer. She is showing signs of ocd. I am treating the rash with diaper rash cream. Could I give ibuprofen to bring down some inflammation? Thank you

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