Epiphany - Applied Neurological Analysis For 5 years I have been learning and applying ABA (Applied Behavioural Analysis) to treat autism. This is a very time consuming, although highly fruitful process. Continued gradual improvement has been the result. Then in December 2012 came my epiphany. I read a very interesting clinical trial - A randomised controlled trial of bumetanide in the treatment of autism inchildren . This turned out to be a transformative moment for my son. I thoroughly checked the possible side effects, acquired bumetanide , and made my own trial not telling anybody. Almost immediately the positive effects began to show and I kept getting unprompted feedback from school, relatives and even the special piano teacher. "What has happened to Monty ?" they were all asking and then they started telling me all the great things he was doing. Then I looked into the history of the controlled trial. It all started when Lemmonier asked a colleague why is was that...
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Hi Peter- I want to thank you for your posts. Your blog is one of the most informative sources of information for anyone with an interest in ASD. I have lots of questions in terms of how you source meds/ supplements; how you get your son tested to check on overall health etc . Is it best for me to post these questions here or would you rather I emailed you? Thanks again for all your research and willingness to share.
ReplyDeleteMonica
Hi Monica, just post your questions here. Peter
DeleteGreat! So here we go.... My first question is on Bumetadine which I am really interested in getting my 10 year old boy on. I am not sure how to get it...I haven't tried my GP yet but I know the answer. I have contacted Dr Ben-Ari who has suggested enrolling on the next trial. I am happy to do that but what about if we get given the placebo? Could you share where you source it from? I also have some concern around checking potassium levels. You mentioned Monty's levels are ok. How often do you get him checked? Do you do it through the NHS (assuming you are in the UK). On a side note my son has been on NAC ( Pharmanac) for a few months now and am really pleased with the results (decrease in obsessive behaviour). Having recently been to Italy I noticed you can get NAC in the form of Fluimucil over the counter and its quite cheap too. I am really keen to get started with the diuretic ASAP and statins after that. Thanks again Peter and Happy New Year. Monica
ReplyDeleteHi Monica. I do not live in the UK. In the UK you could ask for a private prescription, this is possible even on line. Statins in the UK are available OTC. It is only Simvastatin that you can buy in the UK, but it has similar properties to Atorvastatin and Lovastatin. These are the 3 popular statins that can cross the blood brain barrier. If you go to Italy again I think you will be able to acquire bumetanide very easily. The UK system is the least flexible, the Latin countries realize that nobody is likely to abuse a diuretic.
DeleteThe alternative is an internet pharmacy. It is a very cheap drug, about 4 pence per tablet, so it would not be worthwhile making fake ones. Also being a diuretic, you will know within half an hour if it is genuine.
I am buying Swanson NAC which is available on line in the UK via Amazon and elsewhere. It is quite cheap. If you join Ben Ari's trial you my find that they will give you continued access to bumetanide after the trial finishes. I would suggest using a potassium supplement and eating bananas and then you do not need to worry so much about the blood test. I did the test after 4 weeks and then then again recently. After 7 days you will know if bumetanide works for you. It evidently does not work in all cases.