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Friday, 14 February 2014

Bumetanide Dosage & Effectiveness in Autism & Asperger's



The clinical trial of Bumetanide in autism, published in 2012, was what triggered my interest in using drugs to treat autism.


In that trial on children aged 3-11 years, the dosage used was 1mg a day, split in two doses.

In my trial, I found 1mg in the morning effective, while splitting the dose rendered it ineffective. 
I was surprised to hear that the French researchers find the treatment effective in 90% of cases of autism, including Asperger’s.  The reason is that while Monty, now aged 10 with ASD, is a responder, it seems that most people I know who have tried it have not responded.  Only one did respond, and that was when the father upped the dosage.

Now I hear that Lemmonier’s standard dosage has doubled to 2mg a day, with 1mg in the morning and 1mg at 5pm.  He tries for three months, before assuming the drug to be ineffective.
So to anyone who tried Bumetanide without success, maybe it is time to try again at the revised dosage and see if you are in the 90%.

The researchers are also suggesting Bumetanide is given from a very early age, as soon as autism is suspected.


 

63 comments:

  1. Hi Peter! I am reading with great interest about you quest to create a pill. We are happy to trial it when you are ready. In the meantime I am still struggling to get hold of Bumetanide as even on line you need a prescription. Any advice? Many thanks Monica

    ReplyDelete
  2. I am not an expert on internet pharmacies, but there are plenty of them (in Mexico and the South Pacific) who are sending precription only medicines like T3, thyroid hormones, without a precription to older people in the UK. If you look on the forums they use to discuss their health you will find them. Some internet pharmacies are scams, but not all. Some of them charge you extra for them to provide a "prescription" that they mail with the drug. A long time ago I did look into it and you could buy bumetanide in this way, it just takes a while to find it. In Spanish it is called Miccil, other name is Bumex.

    I just looked and found this one:-

    http://www.mexmeds4you.com/productdetails.asp?pid=2220

    Use Paypal, just to be on the safe side. I have no idea if they are genuine.

    The older ladies in the UK buying T3 from Mexico will be able to recommend a reliable supplier.

    ReplyDelete
  3. Hope readers of this blog who used Bumetanide can write feed-ups, so we can share experiences. In 2013 I tried with 0.5 mg +1 mg / day for 6 weeks, no effect seen. And now I tried 1 mg +1 mg / day for 1 weeks, no effect seen, I feel it is better for me to stop for now. Peter, you may give link to the recent Science paper. Yi

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  4. How would you describe Monty's reaction to bumetanide? I've read testimonials online that it increases awareness to surroundings. I wonder if that increases sociability as well. I know you mention in your blog that clonazepam works for sociability, do any other pieces of your polypill have a similar effect? It is a difficult drug to obtain, but I do not doubt at all its effectiveness in increasing sociability. I really appreciate all your research, I'm sure it has help many people and families such as myself. Keep up the great work!

    ReplyDelete
  5. Bumetanide was the first "smart drug" we used, so it appeared to have the most effect. By making his brain function better there were numerous effects including sociability. The head teacher at school called his behavior "joyous" and asked what had changed. I think the main effect is cognitive, but as a result you are more aware of your surroundings, so you can interact more with peers and also begin to learn from the teacher. This then triggers a cascade of improvements. Clonazepam is hard to obtain because people abuse it. The doses for autism are tiny. The smallest possible pill is enough for 8 days of treatment. So one bottle of pills will last 13 months. I think that if Bumetanide has a positive effect, there is a good chance so will Clonazepam, since they are both affecting GABA. In some people with ASD, neither have an effect; that just means they have a different sub-type of autism. The TRH agonist will be even harder to obtain, but it also has an effect on mood. It is being developed actively in the US to give to returning soldiers who have depression. They are highly prone to suicide and side effect of anti-depressants is an INCREASE in suicidal thought. TRH stabilizes mood and is also anti-epileptic. Since 30% of kids with ASD will develop seizures, it looks like a smart idea to prevent them occurring in the first place. This may sound fanciful, but I think the PolyPill ingredients may achieve this. Time will tell,

    ReplyDelete
    Replies
    1. Is it possible to obtain TRH agonists now? Any drugs currently on the market?

      Delete
    2. It depends where you live. Ceredist/taltirelin is available in Japan, and has been for ten years. Protirelin is available as a liquid called Antepan in many countries, this can be diluted with saline to make a TRH nasal spray.

      Delete
  6. Good evening.


    I have been giving my 5years old, 15 kg son 1mg single dose every evening for the last three weeks. I think there is some improvement and I consider changing the scheme to 1mg b.d. He is also taking melatonin every night for the last few months ( that has been a great help)

    May I ask what dosage you use, at what age and how may kilo's?

    regards

    ReplyDelete
    Replies
    1. My son weighs 33kg and is 10 years old. I give him 1mg of Bumetanide at breakfast. I think it will have a much greater effect if given in the morning, rather than the evening. In my son it causes a lot of diuresis and so I did not give an evening dose. 0.5 mg at breakfast and 0.5mg in the early afternoon had no effect at all. The required dose seems to vary from person to person, i.e. not just as a function of weight.

      Delete
    2. thanks for your reply. I give it in the evening because it is easier to mix it with his yogurt. He wouldn't take it otherwise. So per Kg we give about the same dosage. Yes, it does give a lot of diuresis for my son as well. He has started saying some simple words in context which is a measurable improvement, hence I was considering increasing the dose. After a few weeks I am planning to try again some iPad Apps for autistic kids ( like FindMe) that he failed miserably before. If I see improvement, then we will have a measurable change.
      For your information I have tried a single dose Suramin injection about 6 months ago without any effect.

      Delete
    3. I think that most of the effect of Bumetanide will be lost by the morning. I crush the tablet and give it in orange juice, with a straw. If Bumetanide works then try the other GABA related drugs as well. Clonazepam, in a tiny dose (one tablet lasts a week), has the same kind of positive cognitive effect as Bumetanide, it all goes in the same juice at breakfast. Both work in my son. It is good to have an objective measure of the effect, like the Apps.

      Delete
  7. thanks for your reply. He does not drink juices and is very difficult to force him anything, he will tightly close his lips. Also a morning dose will make him get wet in school ( although he still wears nappies) I will try though to see if I can give him a morning dose as well.
    Although I can see the logic behind Clonazepam, I believe it is quite difficult to purchase this in UK without a prescription; I am afraid that although I would be inclined to give it a try, I have no means of acquiring it.

    I may well try to up his dose and give him 1mg morning and 1mg in the evening. I will let you know if there is any chance either for the better or worse.

    ReplyDelete
    Replies
    1. Plenty of people are buying Clonazepam over the internet. One pack (50 tabs) with the smallest tablet 0.5mg, would last your child a year. The people abusing this drug will be buying 2mg + sizes. A lot of people in the UK are buying T3 thyroid hormones from Mexico. Also the European Medicines Agency told me to tell people that they have the right to ask from their national drug regulator, permission to use "experimental" drugs on a named patient basis. Why not try this? In the UK is www.MHRA.gov.uk

      Delete
    2. This is the email sent by the EMA:-

      Dear Mr Lloyd-Thomas,



      As discussed I am attaching some information regarding Compassionate Use and Name Patient Systems in Europe for your information.


      http://www.basg.at/en/medicines/before-authorisation/compassionate-use



      http://laegemiddelstyrelsen.dk/en/topics/authorisation-and-supervision/compassionate-use-permits/application---medicines-for-human-use



      http://ansm.sante.fr/Activites/Autorisations-Temporaires-d-Utilisation-ATU/Autorisations-Temporaires-d-Utilisation/(offset)/0#paragraph_5139



      http://www.cbg-meb.nl/CBG/en/human-medicines/regulatory-affairs/Compassionate-use-programme/how-can-we-come-under-consideration-for-a-compassionate-use-programme/default.htm



      http://www.lakemedelsverket.se/english/product/Medicinal-products/Special-Permissions/



      http://www.mhra.gov.uk/Howweregulate/Medicines/Importingandexportingmedicines/Importingunlicensedmedicines/index.htm



      http://www.fimea.fi/healthcare_professionals/special_permission_for_compassionate_use



      http://www.ema.europa.eu/ema/index.jsp?curl=pages/regulation/general/general_content_000293.jsp&mid=WC0b01ac058007e691

      Delete
  8. Thank you for the detailed information. I will look into it and keep you updated

    ReplyDelete
  9. Hello Peter, my daughter has low sodium levels and high chloride levels in her serum electrolytes panel. What would I have to do to be able to do a trial of bumetanide for her? I understand it is a diuretic so it might eliminate sodium a lot more. She drinks 2 tender coconuts a day (it is high potassium so that might be the reason NA is low). I started the tender coconuts because she definitely seemed a whole lot more present when I it to her. I realy suspect she might high chloride levels in the CSF. I could stop that temporarily while doing this trial. Let me know what you think.

    ReplyDelete
    Replies
    1. Hello Jenny, first of all remember I am not a doctor. When I was considering Bumetanide, the medical advice I received was to keep a close eye on potassium levels. It was suggested to check electrolytes before starting and again after a couple of weeks when things have reached a new steady state, and periodically thereafter.

      As you point out, there is relationship between sodium and potassium. Quite possibly, your “coconut therapy” has affected the electrolyte balance.
      In my son, and in the majority of children in the clinical trials in France, Bumetanide did NOT significantly lower potassium levels. Like you, I have found that having “high normal” potassium levels does improve behavior. When I told the Bumetanide researchers this, they were not surprised. Higher potassium levels will also help the same ion channel dysfunction they are targeting.

      What is not wise, is to change more than one thing at once. If you stop the coconuts and start the bumetanide at the same time, you will never know what has caused any changes that then follow.

      You could try bumetanide and then check the electrolytes after two weeks. If K+ levels are normal and behavior/cognition/speech improve then you would know that your child is a responder and electrolytes are OK. If she responds well but K+ falls, then you just add a supplement, like the French researchers do.

      If you are worried about the coconuts, then you might stop them, wait a couple of weeks, measure electrolytes and then start your bumetanide trial, measuring electrolytes again after two weeks.

      What I do is give bumetanide and give a small potassium supplement, since I want potassium to be “high normal” and not to worry about low potassium.

      The problems would occur if you never checked the electrolytes, had a rare child with low K+, and again the child responded unusually to bumetanide by expelling high levels of K+. Then, after a time K+ levels could become dangerously low. This is why people on drugs like bumetanide are either told to take extra potassium or to take an additional drug which causes potassium to be retained.

      My experience was that electrolytes were normal before and after starting the therapy. The therapy has been trouble free.

      Delete
  10. Thank you so much Peter. I am going to consult a pediatrician before I try this because I dont want her to go too low sodium. But at the same time, Im really interested in this! You say potassium didnt go down too much. What about Na levels? Did they reduce after the therapy? Here are her serum electrolyte levels recently done with the reference ranges by the side. You may see why Im so concerned about her sodium levels-
    1) SERUM IONISED CALCIUM 1.37 mmol/L 1.1 - 1.3
    2) SERUM MAGNESIUM 2.2mg/dL normal range 1.6 - 2.3
    3) SERUM SODIUM 136 mmol/L range 135 - 145
    4) SERUM POTASSIUM 4.5 mmol/L 3.5 - 5.5
    5) SERUM CHLORIDE 102 mmol/L 98 - 107

    ReplyDelete
    Replies
    1. It is best to ask your pediatrician. A diuretic would be expected to lower sodium levels. If you look at what causes low sodium, there is a long list including thyroid issues. It is wise to check thyroid hormone levels, since they can by low/high in autism, and this can be treated. Most likely the coconuts have affected potassium and sodium. Best to ask your doctor.

      Delete
  11. Hi Peter. Just for reference, I have a 4.5 year old son with mild/moderate classic autism. I was one of the parents that reported great results with super sprouts back in Nov/Dec '14. Yesterday we had our routine visit with my son's psychiatrist to review his current medications and make adjustments. I asked about trying Bumetanide and gave her a copy of the 2012 Lemonnier study. Without reading the study, she knew about the hypokalemic affects of Bumetanide and thought it would be too dangerous to try. That seemed extreme to me, especially since we were already trying Guanfacine and Clonidine on her advice. Also, she mentioned the challenges with drawing blood to check for potassium levels. My response to that point was if we are willing to draw blood regularly, it must really be working well. If it wasn't working, then we would just drop it. She did leave the door open and said that she would run this by someone more "into autism research" which sort of made me wonder why we were seeing her in the first place, but oh well. The door remains slightly open.

    So that brings me back to you. You have mentioned a few times that Bumetanide is currently in the stages of being approved for treating Autism in France. Can you elaborate more on that? Perhaps provide a link? I have looked hard for references to that but cannot find any. That would help my case.

    Thanks.

    ReplyDelete
    Replies
    1. My information was from the researchers themselves.

      They have established a company to develop this as a treatment.

      http://www.neurochlore.fr/

      They told me that it would take about four years to get approval for the use of bumetanide in children for autism in Europe.

      I suggest you contact Neurochlore, or better still, ask your psychiatrist to contact them from a hospital/academic email address. They speak English, but a short email is more likely to get a reply.

      Bumetanide is used in babies and it is well known that a minority of people taking it will need to take a potassium supplement, but most do not. It is far safer than the drugs psychiatrist readily do prescribe in the US. If you lived in the UK, your son with mild/moderate autism would not receive any medication.

      Delete
  12. Hi Pete. My son is 6 years old, 26 lbs. We just started today the bumetamide 1mg in the morning. The medicine was bought in Venezuela. Wondering about the electrolytes. How do you measure it and is there something specific we should be in the look out. Could you elaborate more please.

    Thanks.
    Manuel

    ReplyDelete
    Replies
    1. Manuel, measuring electrolytes is a standard blood test that is very common. The potassium level is the likely one that bumetanide may lower. The measurement is in different units in different countries, but it is good to be at the higher end of normal, so 4.5 to 5 mEq/l. It seems that in some people with autism, higher potassium itself helps behaviour.

      Taking blood can be difficulty, and it takes time to reach a stable level. I was advised to wait 10 days before measuring the new, potentialy lower, level.

      It is known that about 20 percent of people will need to take a potassium supplement. We use 250 mg twice a day, but I target high normal. You can also eat bananas and/or drink orange juice to replace lost potassium.

      Delete
  13. Hi Peter,
    After poring over your blog entries and previous genetic testing we had done with Seth that I had forgotten about, (he is a 21 yr old with autism who has been showing increasing SIB and rage behavior,sleeps very little, and has terrible skin) I decided to jump in. Only three days ago did I begin magnesium, potassium, and quercitin. I am already seeing a dramatic decrease in the SIB and rages. His mood is pretty great and he slept the night for the first time in a long time. Can things work that fast?
    I am shooting in the dark for dosing. Are there any charts to guide this?
    Thanks

    ReplyDelete
    Replies
    1. I have found that in 90% of interventions, it either works immediately or never.

      Usually the cheapest things work the best. So no need to waste your money.

      You just need to experiment to find out what intervention did what and then drop things that did not work. I am also a fan of quercetin.

      Stay within the dosage suggested on the label. Potassium is something not to give too much of in one dose. In Europe the limit is 500mg, but in the US it is very low (100mg).

      Delete
    2. I neglected to mention the NAC Sustain. . We were in such a bad place that I basically threw everything up against the wall to see what would stick which I know is not the best way to trial something. Something clearly did stick, though This is a fantastic run, even if it doesn't last. A definite mid-summer respite I have the nicotine and am contemplating it but it seems so counterintuitive. But Seth's short term memory and attention need some help from something.

      Delete
    3. If the SIB has gone away I would not bother with nicotine.

      For an improvement in cognitive function it is very well worth trying bumetanide, but it is a prescription drug. This can improve awareness, learning and general functioning in half of people with autism.

      If your son has skin problems this would suggest an immune problem and so quercetin should help, but you could also use antihistamines and see what helps.

      Delete
  14. Dear Peter:NAC has gone really good for my son.I have made the analysis and his electrolites are ok.I want to start with bumetanida.,but as I know is a diuretic I,m worried because he`ll go to wc many times.Your son is nearly 3 years with this,he continues going so many times to wc?
    Another thing,NAC IS GOOD FOR HIM,why Propoli seems not to work?I began with half a little spoon,then I continue with a tea spoon but my son dont want to take it,he says it has bad taste.Must I give him a plenty spoon for more days??Can I give him more quantity or it doesn't matter?In how many time should I see some improvement and if it isn,t I must stop giving him broccoli?

    ReplyDelete
    Replies
    1. Bumetanide does make you go to the WC, but it is manageable. Many old people also take it.

      If you give it at home before breakfast, your son will likely go to the WC twice within an hour. So just arrange it so he has time to go twice before he leaves home in the morning.

      Not everyone responds to broccoli or the propolis. NAC seems to help at least 70% of people. Bumetanide seems to help 30-50% of people, and some in a bigger way than others.

      If an intervention does not help, or even makes thing worse, then stop using it. There are many types of autism and what helps one person may not help another.

      Delete
  15. Im an adult on the specrum and i have used it before, just 1mg with breakfast. I couldnt get past having to pee every 5 minutes! If there was any benefit for me, i couldnt tell because the peeing inpaired my ability to socialize. If i have this problem as an adult, how are kids handling the same dose?

    ReplyDelete
    Replies
    1. The bumetanide causes one toilet visit about a half hour after. That's it. She is also on verapamil and the ketogenic diet so that might have something to do with it. Also, her sodium intake would be considered below average by modern standards.

      Delete
  16. Hi Peter. I am the mother of 5 yo boy with ASD from Russia. He has regressive autism at the age of 19 months. A few months before the regression he had poor sleep and hyperactivity. The doctors tried to treat his poor sleep sedative : glycine, phenibut, pantogam, gammalon, magnesium + vitamin B6. All drugs with GABA did not calm his son, but excited. He always had a high chlorine in the blood is 110 ( normal 98-107). I took bumetanide for him and immediately saw that he was calm and was Hyperactive and vocal stimm. But you write that it's therapy for classic autism. My son with regressive autism. I'm confused. Thank you very much!
    Sveta

    ReplyDelete
    Replies
    1. Sveta, there are thousands of types of autism, not just two. My son with what I am calling classic autism, became "more autistic" around three years old. This is a progression of the disease, but you could call it regression.

      Many types of autism and schizophrenia seem to have an excitatory/inhibitory (E/I) imbalance. But there are numerous different underlying causes and so the optimal treatment may vary.

      If all drugs that increased GABA made you son excited, this suggests an E/I imbalance; GABA is working in reverse. So think of your son as having an E/I imbalance. Then you can look for optimal therapy for this specific biological condition. If Bumetanide helps, it is possible that the low dose clonazepam will also help. It is also worth checking if small amounts of GABA agonists, which increase GABA, now have a good effect, since the bumetanide has switched GABA back to inhibitory. Since you are in Russia, you might try a tiny amount of Пикамилон. The GABAb drugs may not help at all in your case, but for others they do seem to help, particularly with Asperger-type autism.

      He will likely have other biological dysfunctions. If you use antioxidants like NAC, you may very likely see the stimming disappear or at least reduce.

      My experience is limited to treating one person with autism. But he fits the description of the original type of autism, which is best studied, very closely. Some people have autism which is of quite different origin and may need totally different treatment.

      Delete
    2. Peter, thank you very much for the reply! NAC I gave. The son became a little better and calmer. Maybe, I gave a small dose? How to calculate the optimum dose of NAC? Son is 5 yo and 20 kg weight. How do You feel about diet gluten free casein free sugar free? If not allergic to these products. DAN recommended. Need this diet?

      Delete
    3. Sveta, I am not a big fan of DAN or special diets, unless there is a clear justification. The ketogenic diet/ Modified Atkins Diet is clearly worth a try if someone has epilepsy, or maybe just odd EEG.

      Some people have a gluten allergy, but this has other symptoms. Clearly someone with gluten allergy and autism would benefit from "gluten free casein free sugar free diet".

      A diet high in sugar is not good for anyone.

      NAC seems to need 600mg three times a day to show effect. The effect will be evident in a day or two.

      Delete
    4. Thanks for your reply.
      Regards. Sveta.

      Delete
  17. Hi Peter,

    At a very recent appointment with our childs's pediatric psychiatrist I suggested looking at trialling Baclofen based on some of the success stories on the Arbaclofen trials and our child's Autism type. As luck would have it, he brought out a paper on Bumetanide. You can just imagine my excitement.

    He stated he received it from a colleague that very day (what are the chances?) and was very interested in it but would need some time to investigate and review before he prescribes.

    Looks like Bumetanide is going mainstream - in some parts of Aus at least.

    My question is around dosage. Based on your experience and what you have come to understand, what would be a starting dosage I could suggest to our Doctor? Our child just turned 10 and is 60kg and quite tall. Would he expect bloodwork to be done before prescribing? Drawing blood from our child is no issue. He just doesn't feel pain and blood fascinates him.

    Thanks Peter.

    Regards,
    D&G

    ReplyDelete
    Replies
    1. Hi D&G

      He is very big for 10 years old.

      I would suggest the regular dose, which is 1mg twice a day. For example at breakfast and early evening. It does produce diuresis and the amount varies greatly from person to person. It is no big issue, apply common sense, just don't take a diuretic just before you leave home.

      It would be good to measure potassium (K+)in his blood before starting and then a couple of weeks later. In about 20% of people bumetanide causes a significant drop in K+, this why older people using bumetanide for other reasons are advised to take a K+ supplement.

      I give 250mg of potassium twice a day and my son loves bananas (a good source of K+).

      My son had no issue with K+ levels, however I discovered that the K+ supplement is in itself beneficial. Other readers found the same.

      The suggested daily dose of K+ is about 3,000mg; almost nobody achieves this. So an extra 500mg of K+ is not unreasonable. In the US, and I think Australia, there is an odd rule saying supplements of K+ cannot exceed 100mg. My very inexpensive one from France is 500mg.

      You need to trial it for a month or even two. It took effect for us after two weeks, but this varies greatly.

      Delete
  18. Hi Peter! I need your help. I think i'll lose my mind. My son has switched from Risperdal to Abilify for his Tourette's but he seems to have developed Tardive dyskinesia. He can't even talk properly! Help...what should i give him? I've read about Vitamin E and Amino acids. I've also written about baclofen. Could it help?

    ReplyDelete
    Replies
    1. I have no experience of Tourette's, but many of the drugs prescribed are the same psychiatric drugs widely used in autism. They do not treat the underlying biological dysfunctions and most have troubling side effects. Most people with autism are likely better off without any of those drugs, perhaps that is also true of Tourette's?

      There numerous other drugs used for Tourette's including Clonidine and even nicotine patches. Tourettes is seen as being caused by a wide number of genes and environmental triggers, so what works for one person may not help the next person.

      If Risperdal worked well, maybe go back to it.

      Delete
  19. Hellow Peter my son is now two weeks with bumetanida 1mg in the morning and 1mg at 5.00 oclock.Till now I see nothing.Must I go on till three months?
    If nothing happens after this time,must I try with another thing like arbaclofen??

    ReplyDelete
    Replies
    1. I would continue for 6 more weeks to be sure. The researchers found that in some people it took two months to show effect. In my son it took two weeks. It seems to be effective in about half of people with autism. Then try other therapies.

      Delete
  20. Hi peter, Do kids with classic autism have low muscle tone and GI issues and do they show great IQ in toddlerhood and later struggle to learn new things? ( like my daughter). I can't seem to figure out whether she has classic autism or regressive autism or a combination of both. Bumetanide seems to work very well for "French autism" but what about "USA autism" . Kids with autism in U.S. Widely differ from each other but they are all diagnosed with "autism". So I always suspected environmental assaults and epigenetics.Also our autism rate is very high when compared to other countries.

    Does high chlorine levels in serum is a indicator of high intracellular chloride levels in neurons? If a child displays more autism symptoms as years go by, does it suggest a correlation with increase in intracellular chloride Levels and as a result more E/I imbalance?



    ReplyDelete
    Replies
    1. There are very many types of autism, not just two. If your daughter had great IQ in toddlerhood, it is not classic autism.
      The US has high diagnoses of most disorders, particularly ADHD and autism. This just means they like diagnosing these things. Actual incidence is likely similar to other developed countries.
      I do not think serum chloride level will tell you anything relevant. Bumetanide seems to help about 50% of people with French Autism, which probably equates to 25% of people with American Autism. Probably 50% of people diagnosed with autism in the US, would not be diagnosed as such in other countries.
      Some children with autism start out moderately affected and then a later event in early childhood triggers a big regression resulting in severe autism. There are many possible causes.
      Mitochondrial disease is worth checking for, this is mainstream medicine in the US. It often occurs in autism.

      Delete
  21. Dear Peter,

    I asked Eric Lemmonier some questions about Bumetanide, and got some response. I post it below, in case you want to mention it in your blog.

    I can also mention two other interesting things I've noticed:
    - Ben-Ari mentions two Bumetanide patient "case reports" in press in his publication list, one on Parkinson's, and one one Schizophrenia. Seems like GABA functioning is faulty in a lot of diseases.
    - There were encouraging results from Neuren's Trofinetide drug on Fragile X before Christmas. The results were stronger for Fragile X (high spine density) than the earlier Rett's trial (low spine density). I'm really eager for them to finish a phase 3 clinical trial in one of those disorders and get ahead with approval so that this compound can be tested on people like myself. I hope they will do a phase 2 on idiopathic autism too, this year. I don't see why not, except the cost.

    Thanks,

    Joel


    1) Have you seen any long term improvements other than those published, such as
    - attention / memory / executive function?
    - motor control?
    - repetitive behaviours / stimming?

    "yes with time I observe a global improvements but this is not systematic (for all patient) and I’ll try with a new trial to specify on witch cognitive and neuro sensorial dimension we have a effect"

    2) Have you noticed any non-behavioural changes, such as
    - reduced oxidative stress / amino acids / metabolites?
    - gene expression? (in mice :-)
    - dendritic morphology? (in mice :-)

    "no except in our work with Nouchine Hadjikhani with IRMf technic"

    3) Are you considering trialling pro-drug versions of Bumetanide (that more easily accesses the brain) anytime soon?

    "Yes but developing a new treatment is a very long and uncertain way"

    ReplyDelete
  22. Dear peter and all,

    I am keen to try bumetamide for my 2 year old son with ASD (who has made improvements after starting Biomedical intervention - vitamin and pro biotic supplements).

    But I am keen to try bumetamide under the guidance of a Paeditirican (preferebly MAPS), can any one in this forum kindly recommned a paeditrician in UK?


    regards,
    Deepak
    +44-7706-160-258
    angeshwar@yahoo.com

    ReplyDelete
    Replies
    1. There are no MAPS doctors in the UK. They lists their members on medmaps.org. NHS doctors follow the rules and the rules state that there are no drug therapies for core autism. So if you want to use emerging therapies you may need to go to the US to find a doctor.

      Delete
    2. Deepak, you may want to consider attending the UK autism conference in June, Brunel Uni, London. Bumetanide will be one of the topics discussed, by Dr Lemonnier himself.

      http://treatingautism.org.uk/event/the-treating-autism-international-conference-2016/

      Delete
  23. Thanks, I do plan to visit the UK autism conference in June.

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  24. If there are no MAPS doctors in the UK, can some one point me to a private paeditrician who treats ASD and prescribes medecines (wither in UK or Europe), I am keen to try leucovorin (folinic acid) but it looks like I need a prescription for this.

    I have also send my son's blood sample to http://iliadneuro.com/lab_tests and awaiting the results.
    This is for Folate receptor antobodi test.

    So trying to get in touch with a paeditrician and get an appointment before the test results come in.

    regards,
    Deepak.

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  25. Can anyone from the US recommend an on line Mexican pharmacy for ordering Bumetadine?
    Thanks

    ReplyDelete
  26. Hi Peter,

    Any thoughts on the use of higher dosing in adults? Obviously that put a strain on kidneys, and hypokalemia would be have to be monitored. In a recent paper on parkinsons they used 5 mg per day.

    ReplyDelete
    Replies
    1. The diuretic effect reaches a plateau and thereafter there is no further effect. There are studies on this. I do not know about the effect in the brain, I suspect there will be something similar. To increase the effect your best bet is to add more doses throughout the day. We started with 1mg once a day and it did work, now we dose twice a day. You could try 2mg twice a day for example.

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  27. For European readers I can report that goldpharma is again offering bumetanide. That's where I get my pills without prescription.

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  28. Hello Peter, I have started yesterday the treatment with bumetanide for my son 3 years old...1mg per day single dose. It seems he has and increased diuresis but also I noticed that he is not in a very good mood since yesterday...he is more quiet and apathetic...maybe it is the blood pressure?? What do you think...what are the bumetanid side effects excepting the potassium decrease? Maybe it is only at the beginning of the treatment, the body will get used in time with the drug. Thank you for your response! Cati (Romania)

    ReplyDelete
    Replies
    1. You need to give potassium to compensate for that lost from increased diuresis and extra fluids, so lots of water. Some people automatically drink more, but some do not. Older children are drinking 3 litres a day, I think you should be aiming for 2 litres. This may sound a lot.

      I think bumetanide side effects in autism trials are from low potassium and/or dehydration.

      The blood pressure lowering effect of bumetanide comes from the reduction of fluids in your body. If you drink extra fluids there will be no drop in blood pressure.

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  29. Peter do you know if Brumetanide has a similar effect as Spironolactone? the on label uses seem the same so I'm just wondering.
    Kate

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    Replies
    1. Kate, Spironolactone and Bumetanide are both diuretics, but the autism effect from Bumetanide is not due to diuresis.

      There are two things called transporters that are "blocked" by Bumetanide, one is called NKCC2 and the other is called NKCC1. Blocking NKCC2 causes diuresis, but blocking NKCC1 does not. There are also other ways that a diuretic can work.

      NKCC1 is found in the brain and when you block it, it lowers the level of chloride within brain cells. This is the autism effect of bumetanide, lowering the level of chloride inside brain cells.

      Spironolactone may help some people with autism, because it raises the level of potassium, but it is not one of the drugs that can lower chloride in neurons.

      The ideal autism drug would just block NKCC1 and so avoid the diuresis of bumetanide and so avoid issues of loss of fluids and electrolytes.

      For people who find bumetanide causes a troubling loss of potassium, there is an argument to use spironolactone to solve this problem. In most people the loss of potassium can be countered by changes in diet (extra bananas, kiwis etc) and taking a potassium supplement with bumetanide, for example 1mg bumetanide with 250mg of potassium.

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    2. Thank you Peter I haver been devouring your blog with so much interest and am amazed at your level of knowledge. Were currently trailing Rupatadine on my 8 year old 30kg son with 10mg in morning and 10mg in afternoon but its not doing much. would you suggest trailing 20mg in one dose? We accidentally stumbled on clarity which had an amazing effect on him 10mg twice a day but after giving this for 5 days the effect wore off and is no longer effective! how can this be? Im not trialling other antihistamines and bought rupatidine online. were int he UK btw

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    3. Kate, rupatadine and also ketotifen are supposed to take some days before they become effective, so I would give it at least two weeks.

      If claritin works for five days you could use it in cycles, say 5 days on and then 5 days off. Many drugs have a short term positive effect in autism and then the body's feedback loops take effect and counter their effect of the drug, it is very common.

      Most drugs, claritin included, have multiple effects (modes of action) and so you need to figure out which effect is giving the autism benefit. This is not always easy.

      The other health issues (eg allergy, GI issues) that your son may have can often point you in the direction of possible interventions.


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    4. Thank you will keep at it for a while. Do you think 10mg /day is tough for 30kg 8 year old or should I go higher dose as the protocol; does say 20mg but is weight dependent i guess. I have both drugs available Ketotifen and Rupatadine which one would you prefer for a child with high histamine issues leading to a lot of behaviour hyperactivity and red circles under eyes. We also tried Clarityn again but to no avail- very disappointing

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    5. Kate, the usual dose for children of 30kg seems to be 5mg.

      https://www.drugs.com/uk/rupafin-1-mg-ml-oral-solution-leaflet.html

      Since your child has genuine signs of allergy, your local GP should be willing to help. A GP in the UK is not going to treat autism, but if you tell her/him that allergies make autism worse you should get some help.

      Cromolyn sodium is also widely used and you could ask the GP for it. Ketotifen seems to be used in the US in people with autism. It is a case of seeing what works in your specific case.

      There is a long list of things that may help. I would ask your GP for help and maybe try if you can see a paediatrician regarding allergy. I would not overdo the autism part, or else you may get nothing.

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