Monday, 17 June 2019

Spring in Beijing

The Great Wall of China, two hours north of Beijing

Monty, now aged 15 with ASD, continued his travels recently with an Easter visit to China. Long haul travel can be much more demanding than shorter trips because of the change in time zone and simply the fact that you are stuck on the plane for such a long time.

Many people with autism, and indeed Asperger’s, have problems with air travel, while some other people even with severe autism have no issues whatsoever.  Some people with severe autism never go on holiday, travel being such a problem.  Some people repeat the same holiday every year.  It does not really follow any pattern.

One issue I came across at the recent conference in London was that some people cannot even consider a far-away medical specialist or enroll in a clinical trial, due the travel required.  But what to do if the autism doctor does not make house calls? Some people do take their child thousands of miles to see a specialist, but many cannot.

Monty has been flying since he was a baby, but he did have his share of problems from time to time.  For the last few years, with autism under control with his Polypill, travel has not been difficult. The only issue remaining is not really an autism issue, it is an ear popping issue. Some people’s ears just do not seem to pop after changes in air pressure and it does not matter what tricks you use, it can take a few hours for ears to go back to their normal state.

Random enhanced airport security checks very often seem to select Monty; even that is no longer an issue.  China has automated fingerprinting and facial scanning/recognition at the airport, so you have to follow the instructions carefully.

The only issue Monty had with the plane was not being willing to lock himself in the toilet. He expects something larger and with a proper door, not one that folds in the middle. No bumetanide the day of a long flight.

In-flight entertainment was fully appreciated along with all the food you get in nice little packages when you travel long haul.  For kids it is like a 10 hour party, full of surprises, like the unexpected ice cream and chocolate bars.

On arrival in Beijing we found that four people with three bags was too much for the local taxis.  Soon this became four bags and we became a two taxi family.  In Shanghai, which is much more market-driven, we all fitted in a single taxi, as we do everywhere else in the world.

Trains and the metro/underground/subway are excellent in China. The high speed trains run at 330 km/h (200mph) and within big cities the public transport is excellent. All the motorbikes/scooters are electric and the bicycles that were omnipresent when I first visited Beijing have pretty much disappeared.

I was asked how I manage Monty’s Polypill while traveling. It mainly remains the same, I just omit one or two things for practical reasons. For example, I took the Ketoforce liquid BHB, but omitted C8 caprylic acid. Next trip I will bring the C8 as well.

On our trip to Israel where they rummage through all your checked baggage before your departing flight looking for explosives, it was clear they had looked in detail at Monty’s supplies, but it was no issue.

Food in China is different and Chinese food in China is not quite like the Chinese food outside China.  The Chinese do like fried chicken and KFC is everywhere. That was appreciated by Monty and his big brother.

Monty likes noodles, rice and all kinds of soup, so eating was not a problem.

China blocks many Western internet sites like Google and Facebook, so if you are a fan of YouTube like Monty, you need to use a VPN (Virtual Private Network); but we knew about this in advance.

There are plenty of interesting things to do and see in China and independent travel really is very easy, as long as you do not expect people to speak English. In big cities many of the signs are in Chinese and English.

Monty’s big brother is a fan of military history, so we paid a visit to Beijing’s military museum. It is vast and even though it is packed with exhibits, it feels very spacious. They have a U2 spy plane that they reassembled after shooting it down over China, and a photo of it lined up with three others they shot down and reassembled. That was something new to me, I only knew about Gary Powers, the US pilot of a U2 shot down over Russia.  

The U2s were operated for the Americans by the Taiwanese in the Black Cat squadron. In the early 1960s they were flying over mainland China and the Chinese shot several down.  The pilots who survived had to wait till 1982 to go home.  China still wants to get Taiwan back.

The indigenous population of Taiwan were not Chinese. After a period of rule by the Dutch, came rule by China and mass immigration in the 17th century. Today only 2% of the population are indigenous.

China lost Taiwan to Japan in 1895. After being a Japanese colony for 50 years, when world war two ended the Chinese took back control of the island.   At the end of the 20 year civil war in China in 1949 the Communist Party of China (CPC)  held the mainland and the Kuomintang (KMT)-led government of the Republic of China (ROC) fled to Taiwan. China regards Taiwan as a renegade province that must be reunited with the Mainland.

Taiwan’s tallest mountain, Yu Shan, was renamed by the Japanese as Mount Niitake (meaning “New High Mountain”) because it was taller than Mount Fuji, back in Japan proper.

"Climb Mount Niitaka" was the coded order for the Japanese to attack Pearl Harbour in 1941.

I think most foreigners are not aware of Japan’s role in China, particularly in the 1930s and up to 1945. Some pretty evil things went on under the Japanese occupation of Manchuria in 1931 and later when they invaded much of the rest of China, killing tens of millions of civilians, but it does not stop today’s Chinese wearing Japanese branded fashion or driving a Toyota.

I was surprised to see quite so many luxury German cars, they seemed to be much more prevalent in Beijing than Berlin; and many were the stretched versions, to give the rear passenger more space.

There really are a lot of counterfeit products, ranging for full-sized lookalike copies of Porsche and Audi cars, to fake Lego Starwars toys. In central Shanghai the western people are constantly targeted by people selling fake Rolex watches and copies of branded handbags.  It looks like the Chinese are buying the real thing, while the younger foreigners are buying their $50 “Rolex”.  There are still relatively few foreigners in China, so in most places you are a curiosity. At the summer palace in Beijing, some teenage girls wanted Monty’s big brother to pose for a photo with them and some parents did encourage their young children to come for a close up view of the gweilo (westerners).

On my last visit to China it was the vast open spaces of Tibet in the West of China that were most impressive. During that trip in the late 1980s, which was rather more adventurous, the Chinese were still making steam locomotives and I still have a certificate from the steam engine factory in Datong that I rode in the cab. Now China has 18,000 miles (29,000 km) of high speed train lines, with more added every day. Back then for $60 I took the train from Beijing to Berlin, via Siberia. I expect it costs rather more these days.

This visit to China I was sitting with Monty on the train getting him to practice his geometry schoolwork while looking out the window at long rows of 30 storey/story  apartment buildings in cities I had never heard of.  

This time we did not make it to Hong Kong, but it is well worth a visit, because it was shaped by its colonial history and also most people do not need a visa.  Foreigners also like it because many people speak English. 

Compared to the huge mega cities in mainland China, Hong Kong has a mere 7 million inhabitants.  Being an island just across the mainland definitely adds to its charm, like Istanbul and the Bosphorus.

More speech

Speech is often a limiting factor in people with autism and very likely needs some help from biology. This is not a simple process, there is no magic supplement to trigger fluent speech.

My current effort is boosting the effect of bumetanide to lower chloride within neurons. Potassium Bromide does do this, but does produce acne spots, which has long been known to be the main side effect.

I am hopeful that another diuretic, Azosemide, will be more potent than Bumetanide at blocking NKCC1 transporters in the brain. It seems to cause minimal diuresis, which is the main side effect of Bumetanide. I found giving Bumetanide was most effective with a larger single daily dose, which is given on waking due to the diuresis caused.  Adding an evening dose of Bumetanide did not seem to have much/any additional effect and causes a second round of diuresis.  An evening dose of Azosemide does seem to produce an incremental cognitive effect and without diuresis.  It is still early days in my investigation.

Some of yesterday’s unprompted speech:

“Monty went to China and came back on the big plane from Beijing. Monty was swimming in the swimming pool and his ears popped !”

The first thing Monty did after returning from the airport was to jump in the swimming pool. That's one way to unblock your ears.

Delayed ear popping clearly is a subject currently on Monty’s mind. The reason turned out to be his upcoming school trip to the mountains; he wanted reassurance that there would be no ear popping involved. The trip is by bus and the mountains are not so high, so no danger of ears popping.

More opinions

As was discussed in a comment with our reader Maja, one effect of a low dose of clemastine, an old OTC antihistamine that also improves myelination, is the emergence of opinions. This is very noticeable. Today “I want scrambled eggs for breakfast”. The previous day he both asks and answers the question:  “what do want for breakfast? … Pancakes”

Rather than repetition, rituals, or just repeating the last part of the question as his answer, now we have opinions. No longer the docile/passive child, he now acts like a teenager with opinions and his own requests.


You may not have to stay close to home if you have a child with Classic Autism.

I think it pays to start travelling early. Nobody is too bothered about a screaming 3 year old, autistic or not; they may not like it and may make comments about bad parenting, but that is all.  It is soon forgotten.

A screaming teenager might get you thrown off the plane, or worse.  So best to start young. Travelling by plane is just another skill to master, like having a haircut or going to the dentist.

If you can reduce biological causes of anxiety, with targeted pharmacotherapy, traveling gets much easier. Once you have figured it out, you just need to carry a little pill box in your pocket to ensure a smooth journey.


  1. Hi Peter and community,

    First, congratulations Peter on the all of the improvement in Monty! When you quote Monty, it really reminds me of my daughter's speech, in that she refers to herself by her name rather than using "I".

    It's wonderful that you are showing Monty the world.

    I just wanted to share the following article on how L-Serine is helping in a very specific situation (GRINpathies):

    Clearly, L-Serine (or D-Serine) won't help everyone, just specific patient populations, but interesting nonetheless and something that Peter had already mentioned in the past but this is an interesting update.


  2. Hi Peter,

    first of all thanks for your great work you have done with this blog. I am medical doctor from Germany and my son with ASD is 10y old now.

    I was not able to find Azosemide online. Where did buy it ? Did you choose your last travel destination with regard to get there Azosemide ?

    Thanks for answering !

    1. Rene, Japan is the place where Azosemide is widely available as a prescription drug. You may be able to contact a doctor in Japan who is willing to send it to you, since you are a doctor. Doctors in Japan also dispense drugs.

      I did not buy it on line, it was given to me to see if it is indeed beneficial. In China Azosemide is no longer used as a prescription drug.

    2. Peter, I wish it would be so easy...just write and get send.

      Never mind, I will check all possible options, with ultima ratio personally to go and get it in Japan. And maybe to combine it with my work, as the abdominal surgery in Japan is among the very best worldwide.

      We have tried Bumetanide one year ago for cca. 4 months. Now I clearly know, that Bumetanide had no chance to show dramatic benefits, because other problems were dominant. We did very comprehensive labwork which confirmed suggested histamine problems / strong mite allergy and histamine intolerance / and surprisingly serious vit. D deficiency despite supplementation. It than helped also to identify some tricky food ingredients / like guar gum / which have caused major problems.

      And now as many things got much better, its time to try it again - but Azosemide has at the moment only adventages over Bumetanide, so its clearly a winner for me right now. By lower effect on diuresis also hypokalemia is quite unlikely.

      So if I understand it right, you are now trying Azosemide twice daily. Which dosage do you use ?

      Thanks a lot !!!

    3. Rene, I obtained another Japanese medicine by contacting an English speaking doctor with a clinic in Jaoan, via email. I explained why I wanted the medicine and he told me the price. I paid in advance and his clinic mailed me the medicine. It was that simple and I only ever contacted one doctor in Japan. The advantage is that the clinic dispenses drugs not just prescriptions. You have the big advantage of being a doctor. You could contact the German embassy in Tokyo and ask for contact details of local doctors they use. Or, just look on Google for a clinic treating foreigners (and so speak English/German).

      My azosemide is just a white powder and I make the 60mg pills. I think the ready-made pills from Japan are what people should use.

      I am using bumetanide 2mg at 7am as for the last few years and now I added 60mg of Azosemide at 5pm. We always have a summertime regression linked to allergy, so summer is wrong time to make a valid trial.

    4. Peter, thanks for all your advices. I have found out that contacting english speaking doctors in Japan is quite challanging nowadays - you will either find no email adress or you won´t get an answer...

      Finally, I was successful and through international pharmacy in Germany will receive in 2 weeks Azosemide from Japan / DIART 60 mg, 3 months supply /.

      I will than post what effects Azosemide has by my son. Thank you once more !!!

    5. Rene, I look forward to hearing the effect of Diart in your son. You might also want to try and obtain another Japanese drug called Ibudilast, a safe PDE4 inhibitor used to treat asthma in Japan, but has potential in at least some autism.

    6. Hi Rene,

      Good luck with the Japanese Azosemide for your child.

      I am curious about the international pharmacy, could you share how it works in Germany? Do they accept prescriptions from other EU countries for drugs like Azosemide or Ibudilast?
      I am a physician from Poland, I’ve bought medications for my son in Germany several times, but never heard about international pharmacies.

      Also I wonder if you have seen the German papers on Bumetanide prodrugs, which “should penetrate the blood-brain barrier more easily than the parent drug and are converted into bumetanide in the brain”:

      Do you know by any chance their Center for Systems Neuroscience in Hannover or how to successfully reach out to them? Brain penetrant Bumetanide prodrug might be the best solution for Bumetanide/Azosemide responders. The French researchers plan to develop such a molecule, but I guess it will take years at best.

    7. Rene, thanks for keeping the community updated on any advances! I agree with Peter, Ibudilast would be the other thing you might want to try that is only available in Japan, or possibly as a research drug in the US.


    8. Peter, I have re-read your post from 2017 about PDE4 inhibitors and my question is - why should I go for Ibudilast from Japan when I can get easily Roflumilast in pharmacy nearby for 9€ per month ? Or have I missed something new about Ibudilast with possible advantages over Roflumilast ??? I have not used PDE4 inhibitors yet, sounds very promising, thanks for pointed me that way. How did it work for Monty ?

      Agnieszka - I am working part-time in Germany now for 13 years, but my home country is Slovakia / so you would probably understand me even if I would write in slovak :) /

      So I tried to get Azosemide in both countries - in Germany through my Chief which has excellent connections in one big University Hospital and also in Slovakia through very good friend of me, a pharmacist, which is working for one pharmacy-owner in three countries / Russia, Slovakia and Germany /. It is definitely possible, and should be also possible in Poland too. They are able to order it only if the medication is not available in your country. Through the pharmacy in Slovakia they were quicker and contacted pharmacy in Japan, the medication will be delivered to Germany and from there to Slovakia and I did not even needed a prescription. I will ask them for more detailed information when I get Azosemide and will inform you. But obviously you will have to know the right people to get it.

      What I don´t fully understand - why the pharmacy should obtain it for you even with prescription, when there are plenty of very similar diuretics widely available in Europe ? And using Azosemide in autism is clearly an off-label use of this drug. Nevermind, I will inform you. By the way getting 3 months supply of Azosemide from Japan is definitely not cheap - 200 pcs cost 200€ + shipping costs...

      I did know about BUM5 from Peters articles. When I will be in one week in Germany again, I will try to contact the main author of these two papers, which is also a chief of the department of novel treatments, and will ask him about actual situation of BUM5.

    9. Rene, 100mcg of Roflumilast/Daxas does look interesting and is patented for cognitive enhancement. In my case it was not tolerated. PDE4 inhibitors have a problem with selectivity and the usual problem is nausea/vomiting. Ibudilast seems to be better tolerated. At least one reader of this blog uses Ibudilast and others have tried it.

    10. Rene, thanks for sharing your experience.

      It is surprising how different things look like even in neighboring countries: in Poland you need an official Ministry of Health approval to import drugs which are not available here. It takes several weeks and the application needs to be filled in by relevant specialist (who would be the one to order Azosemide for autism...?). I did it many times while working in tropical medicine department. But when I tried to get sodium cromoglicate (Nalcrom) for my son diagnosed with MCAS, MoH rejected. Hopefully, the German international pharmacies seem more approachable.

      It would be interesting to know if the German researchers ever considered BUM5 for autism.

  3. Hi Peter,

    I agree with speech as limiting factor and not that easy to target in my opinion.
    Have you seen what they say on this topic in Italy and Venezuela? Here is a recent paper:

    Speech-Stimulating Substances in Autism Spectrum Disorders

    Nothing really new, but CBD/PEA/OEA(?) is mentioned again in the speech context.

    If I was to make my own list of "speech-stimulating substances" for my son, the top three would be: memantine, prednisone and sulforaphane. All three resulted in total insomnia though, so I don't use them. Could there be any association between insomnia and speech increase?

    1. Agnieszka, one interesting point is that CBC/PEA/OEA, among other things, act on TRPV1 which is a heat sensitive ion channel in the CNS. Low level laser therapy is suggested to target heat/light sensitive ion channels. This will be the subject of a new post.

      Eventually, when you consider all of the research I think you may be able to put together a rational picture of what may be going on inside the brain. To date this has not been done, and I think a much better job could be done in synthesizing the existing knowledge.

      I think improved speech is just a measure of success for any autism therapy.

      Broccoli powder had a near immediate effect on my son and I am not convinced this was sulforophane at work.

  4. Traveling is the best way for changing the routine, I wish you good luck!
    I've forgotten to report one more effect of clemastine - quick reading. My daughter couldn't see the whole picture of the text before. All my attempts to mark some words with crayons for easy learning were in vain. When I used to ask a question about the marked word, she would start to read the page slowly from the start.
    Three weeks after introducing clemastine, she got it!
    Even better - in the unknown text, with unmarked words, she was humming the text, pointing with a finger, until she found what she needed.
    There are many new skills hidden in this one.

    1. Maja, I think parents who teach their child are the ones that really notice these changes. I wonder what would happen if there was a clinical trial of clemastine in autism.

      The good thing is that it is an inexpensive safe intervention.

  5. Hi everyone,

    Hope everyone is doing well and enjoying the start of summer!

    I just found a new paper that may interest you, on findings that Donepezil (an AChE inhibitor) and Choline improved language after 12 weeks of treatment, with effects lasting even after a 6 month washout period. This was particularly effective in kids under age 10.

    Since Donepezil is a prescription drug, I would suggest that a natural AChE inhibitor may be a useful substitute, and Choline Bitartrate (which is what was used in this trial) is an easy supplement to order.

    In terms of natural AChE inhibitors, the following two links are helpful in identifying natural AChE inhibitors:

    The one that I am most familiar with is Huperzine A, again something that is accessible via a supplement.

    I can't say how effective this will be, but I thought I would share just in case it's helpful for someone.


  6. Hello! I am a clinical psychologist and mother of a son with high functioning ASD. I have loved reading this blog and have found many gems within it (although I am relatively new to it). Thank you! My son now takes Bumetanide 1 mg bid and a psychopharmacologist recently suggested Mucomyst to address inflammation. Has anyone been using that? I welcome any thoughts, suggestions or ideas.

    1. Kate, Mucomyst is N-Acetylcysteine (NAC), which is widely used in autism and I have used it for 6+ years. There is a lot in this blog about it. It increases GSH one of the body's key antioxidants.

  7. Thank you very much. I will go back to previous posts to learn more about it. How does your son tolerate it? I was told it has as a sulfur-like smell and my son is very sensitive to smell. I am worried he may have difficulty with it for that reason.

    1. Kate, there are many forms of NAC. When NAC is exposed to air it starts to decay and gives a smell of rotten eggs/sulfur.

      Some people use cheap gelatin capsules of NAC. Some people open them and add to water - which tastes bad, but some kids accept it. There are expensive effervescent NAC tablets that taste fine. There is sustained release NAC in a large hard tablet - this is the ideal form if you can actually swallow it.

      My son tolerates NAC with no issues at all.


Post a comment