Monty has
been skiing for many years, after a shaky start when he was 5 years old. He went to a small ski school in Austria
where they only teach kids with special needs. The Porsche family own the ski
lifts in Zell am See and give the school free tickets, so at least you don’t
have to pay for that part. Skiing is never
cheap, but our local slopes are less than four hours drive away and those one-to-one
lessons are a fading memory.
Big brother had
gone for a week skiing with his friends and he stayed on so he could accompany Monty
for 3 days of skiing.
Even though
Monty is actual a very safe skier, people tend not to believe it and they think
he must have constant supervision. In reality,
he goes up the ski lift with his brother and he can make his way down entirely
by himself. His brother takes him to all
the slopes but mainly the black ones (the hardest), far out of sight of their parents.
This year
Monty was on skis and his brother was learning snowboarding; Monty was the one
arriving first at the bottom.
To be
honest, years ago it was really difficult to ski - the boots, the helmet and all
the different kinds of ski lift to get used to.
Some people thought I was mad to be encouraging it. Now skiing is all instinctive, no need for
lessons or even reminders. The myelin is
well and truly doing its job.
You're the best Peter Lloyd Thomas!
ReplyDeleteI logged on because I was curious: are you aware if there are some in the community that have resistance to local anesthesia, moat likely lidocaine? Probably those with the misophonia that respond well to potassium.
Thank you
My daughter has red hair and is therefore resistant to lidocaine. I do not see that she bas misophonia as such, more auditory sensory issues broadly, but she responds well to potassium for this problem. about 130mg in the morning and 100 in the evening, both doses couples with different amounts of b6 and magn.
Deletem, lack of sensitivity to Lidocaine has been mentioned before in this blog.
DeleteIf you are interested in the lack of response to lidocaine you will be interested in the writing of Dr Michael Segal. He writes below about lidocaine in regard to ADHD and also hypo kalemic sensory overload.
In effect, if you do not get a numbing sensation from lidocaine, you likely have an ion channel dysfunction. This is likely to cause you other issues that may be sensory, or even relate to ADHD.
Hypokalemic Sensory Overstimulation
https://www.researchgate.net/publication/5674624_Hypokalemic_Sensory_Overstimulation
We Cannot Say Whether Attention Deficit Hyperactivity Disorder Exists, but We Can Find Its Molecular Mechanisms
https://www.pedneur.com/article/S0887-8994(14)00256-2/fulltext#back-bib3
Regarding pain, lidocaine and people with red hair:-
Increased Sensitivity to Thermal Pain and Reduced Subcutaneous Lidocaine Efficacy in Redheads
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1692342/
Anesthetic requirement in redheads is exaggerated, suggesting that redheads may be especially sensitive to pain. We therefore tested the hypotheses that women with natural red hair are more sensitive to pain, and that redheads are resistant to topical and subcutaneous lidocaine.
Conclusion: Red hair is the phenotype for mutations of the melanocortin 1 receptor. Our results indicate that redheads are more sensitive to thermal pain and are resistant to the analgesic effects of subcutaneous lidocaine. Mutations of the melanocortin 1 receptor, or a consequence thereof, thus modulate pain sensitivity.
Liposomal lidocaine was slightly, but not significantly, less effective in redheads. In contrast, subcutaneous lidocaine was significantly less effective in redheads than in subjects with dark hair.
We found that redheads were significantly more sensitive to cold pain perception, cold pain tolerance, and heat pain tolerance.
Local anesthetics such as lidocaine prevent transmission of nerve impulses by inhibiting passage of sodium ions through ion-selective sodium channels in nerve membranes. However, the peripheral nervous system is not a known site of MC1R expression. There is, therefore, no known direct association between MC1R function and peripheral local anesthetic action.
Whether resistance to local anesthesia is therefore due to central upregulation of melanocortin receptor ligands or some other mechanism remains unknown.
Peter, a question regarding skiing and riding a bike- my daughter is really good at riding a bike and diving/swimming, so its safe to assume with soecialized instruction she’d be good at skiing too. However, the issue is attention to surroundings. Her attention wanders and she is not safe in traffic - be that the street or the slopes. the reason js not an unawareness of rules, just wandering attention. Did you have that issue?
ReplyDeleteIts just that there is very limited use for riding a bike when you can only ride it in places where there will probably not be any pedestrians or cars or other bike riders :-).
Tatjana, I think you develop focus/attention through using it. I thought my son would be unable to ride a bike on a cycle path with people coming the other direction, but it is no problem now.
DeleteThe same with skiing, he was skiing down the slope and I found a point by the trees to stand to take photos, he noticed me, changed his path and skied to me. I was assuming he would just ski past me.
Skiing seems to be easier than dealing with traffic when crossing roads. I think skiing heightens your senses, because it is exhilarating.
I think all sports that involve coordination are helpful. Ice skating is another good one. If you can skate, you can ski and vice versa.
Just start her skiing, every year she will get better and by the time she is a teenager she will be great at it.
It is much easier to learn to ski when you are small. You tend not to fall over and even if you do, it does not hurt much. You just need a friendly, enthusiastic 1:1 instructor.
Ironic you mentioned myelin. I found this article:-
ReplyDeletehttps://www.sciencedaily.com/releases/2020/10/201007145416.htm
N-acetylglucosamine a simple over the counter supplement also found in breast milk repairs myelin in multiple sclerosis. Ive found other articles saying the same thing. If it can do that for MS why not autism?
Ross, indeed why not autism. I think MS therapies are very interesting.
DeleteI am using clemastine and a PDE inhibitor, both are experimental MS therapies. DMF is another MS therapy I use.
N-acetylglucosamine is OTC and worth a try, it has been mentioned before in this blog.
How oligodendrocytes may shape autism
Deletehttps://www.spectrumnews.org/news/how-oligodendrocytes-may-shape-autism/
The connection between oligodendrocytes and autism, though still tenuous, holds significant promise, researchers say. If future studies reinforce findings from the past decade, drugs that boost oligodendrocyte function and promote myelination — some of which are being developed for conditions such as multiple sclerosis — could serve as a treatment for some autistic people
I mentioned N-Acetyl-Glucosamine on this blog a while ago and am pretty sure I linked to the same press release. We use N-Acetyl-Glucosamine from BulkSupplements.com and just mix it into food or drinks. It is relatively cheap and a good compliment to Clemastine in my opinion as well.
DeleteTyler, what's your dose?
Delete/Ling
A teaspoon which is about 2250mg. It does not seem to have any actute effects, rather like Clemastine it is there as a long-term hopeful solution to improving myelination. I would need to get my son multiple types of brain scans to have any idea if it is working or not as I hope it does. It is cheap and harmless, but to be honest I really do not know what an optimum dose would look like for humans when it comes to NAGl.
DeleteThanks Peter, would you recommend both clemastine & a small amount of N-acetylglucosamine? since if i read one of your articles correctly clemastine promotes what myelin is there already & N-acetylglucosamine is supposed to help create more.
ReplyDeleteClemastine is making each Oligodendrocyte make more myelin connections to axons, ie making them work harder. It is also shifting microglia to the M0 resting state.
DeleteAdult brains contain oligodendrocyte progenitor cells (OPCs), which are stem cells that generate myelin-producing cells. Some drugs can stimulate OPCs into generating new oligodendrocyte (the myelin-producing cells). These drugs are interesting and include the anti-fungal Miconazole and PDE4 inhibitors (Ibudilast, Roflumilast, Pentoxifylline etc). It appears that N-Acetyl-Glucosamine also does this.
I would recommend making trials step by step to see what works best in your case. It seems that impaired myelination is a unifying feature of autism, so it is worthwhile to investigate.
Hello Peter -
DeletePlease what dosage do you suggest for NAG to augment Clemastine? Thanks!
Mo, the idea to use NAG for myelination is very new, it has not been trialed in humans for this purpose. It has been trialed for IBD in humans at a high dose. Most people take it as a supplement for their joints at a low dose.
DeleteClemastine is limited by it's drowsiness side effect. NAG seems not to have side effects in most people.
Myelination is a slow process and you would expect any therapy to take months to show any effect.
I think you could consider 1g a day to be a low dose. The IBD dose was 3 to 6g. The bigger the dose the bigger the possible effect. You first have to check that it is well tolerated.
This is very helpful - many thanks. How do you suggest to know if Clemastine is effective - an MRI or gained skills? I'm thinking an MRI after a year. My son did an MRI a few years ago so we have a baseline to compare with.
DeleteI think the effect of clemastine will depend on age and type of autism. It has 2 potential benefits, one is on myelin and the other is reseting activated microglia to the M0 resting state.
DeleteSome people see behavioral or cognitive benefits after a few months. So it will be subjective.
I don't think it is worth doing another MRI. This can be used to measure myelination, but it needs an expert.
Understood. I wish there was an objective measure to test efficacy, to guide whether to continue or stop. I know from your blog (it was a comment from someone on an MS blog), we may have to trial for up to 2 years. I'm excited about the prospect of remyelination. I am going to educate myself on resetting activated microglia. Much appreciated.
DeleteHi Peter
ReplyDeletePlease what are your thoughts on guanfacine.We just got a prescription for it yesterday from the paediatrician .
Thanks
Apinke, some people with ADHD find Guanfacine to be great while others hate it. Make a trial and see if it helps. If it helps keep using it, if it does not then ask the doctor to try something else.
DeleteThere are good reasons why it should help some people with autism.
Thanks Peter.We havent seen anything yet apart from drowsiness but still his usual cheeky self and no negative effects like elvanse and methylphenidate so fingers crossed this should be fine.
DeleteI will let you know how it goes.
Thanks
Thanks for another great tip, Peter, namely verapamil. I decided to use it after all because the tiny dose I use, I do not think it affects her liver capacity all that much. She is superstable at school now, everyone is blown away. Mood and demand avoidance improved so much. we use 20mg morning and afternoon. I don’t want her taking medication at school, so she is only on her one dose from 7.45h morning till 15-17h depending when she gets home. honestly I also feel we at home should benefit from verapamil/mood stability as well, so the late second dose is also for our selfish reasons! :-)
ReplyDeleteTatjana, I am glad it helps.
DeleteOn the subject of Malarone, I was sent this link to a talk, you will want to view.
Friday, March 26, 2021 at 3:00 PM EDT
Malarone for Autism with Karla Paravani
https://www.facebook.com/events/583365432825384/
That is the original mom that got me started on it. I connected her to Enrique who is doing this live chat with her. I think her case is remarkable. A few parents around me have started and some have had similar effects to me - and some had nothing.
DeleteMost remarkable to me is the case of a 35year old man with intellectual disability who has visibly improved in about 7 days of therapy - and its always the same for everyone it works for - in short, less anxiety and more communication. In my very very small sample, it seems to work for cases where previously there was improvement with gcmaf. Its possible that thr antiviral effect of Malarone is its ‘working mechanism’.
Tatjana, boy Enrique do you know if he had digestive problems and selective poor diet, I ask you because we also bought Malarone and we want to start, but we are afraid of a side reaction, I hope you keep us informed and maybe we will find out more, thanks
Deleteits really very simple to try. try for 3 days. if it helps, it helps. if it does not help, stop. of the people
Deletewho tried nobody had significant GI issues. I think with significant GI issues I would focus on a microbiom test.
Peter, would you please comment on this groundbreaking news, I was not able for find any other research based on the retinal difference or even any other physical difference in general?
ReplyDeletehttps://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(20)30332-1/fulltext
"This study has found significant retinal characteristics between ASD and their age-gender-matched control. In particular, ASD subjects have significantly larger optic disc diameter and larger optic cup diameter."
The study is interesting, they looked at an image of the retina in 46 children attending special schools in Hong Kong. I think we can infer they all have severe autism.
DeleteThe study found that there are identifiable differences in the retinas of these children vs typical children.
The advantage of this approach over say using an MRI is that, although a special retinal camera was used, it is quite a fast inexpensive process.
Do people with Asperger’s share these retinal differences? Do people with MR/ID, but no autism have these differences? Do babies/toddlers that will go on to have an autism diagnosis share these differences?
The purpose of the study is the support the authors’ patent and provide a justification for starting behavioral intervention at an earlier stage.
In Hong Kong you have to pay a lot of money for behavioral intervention at any age.
There are other groups trying to find reliable ways to identify autism in very young children, often via blood tests.
I think an experienced person can spot a toddler with severe autism in a minute. It is only mild and borderline cases that need lengthy assessments.
It makes much more sense to have biological, rather than behavioral intervention in one year olds.
Thank you for the prompt reply, Peter. Indeed, precise diagnosis early as possible could be crucial. There's one more outcome - once we know (really proven, double blinded, etc) that there's a physical difference, the scientists could start investigating what cause the larger disc diameter and optic cup diameter and identify eventually genes, related to such anomaly. Knowing those genes could create whole new approach on treatments and therapies. Anyway, just wanted to know your view on the legitimacy of this research.
DeletePlease, how can I get malarone in the U.S? Thanks!
ReplyDeleteI don’t know. If times were as usual, I would just tell a doctor that I am planning a 6 week long trip to an African country with malaria. Maybe that is still an option, I don’t know if travel is allowed from us to Africa?
DeleteHello, we started Verapamil 10 days ago, but since 5 days ago we have quite a bit of nausea, interestingly in the hours when Verapamil should have worn off already. Its also stronger when a car ride is involved. Does it make sense to develop nausea 5 days after introducing it, and also, if we have to discontinue it, is there anything else we can use with a smilar effect? The stability has been a serious gain.
ReplyDeleteTatjana, nausea is listed as a possible side effect. It may very well be a coincidence. If you stop Verapamil and the nausea disappears and it returns when you re-start, then you have your answer.
DeleteVerapamil is seen as one of the best tolerated calcium channel blockers.
I suggest you first determine if Verapamil is causing the nausea.
we will do exactly that. I read up on it and apparently after a few days of use the drug will remain longer jn the system. I find it pretty strange that a 20 mg dose would cause anything indlucing indigestion but I will stop it for now. Weather locally is also less allergieinducing right now. I will consult with a child cardiologist I know, to see what she says, as well.
Deletetotal mistake on my part, after a late visit and checkup at the doctor last night we now know she has some sort of non covid viral sore throat and inflamed ears, which at her age comes with lots of nausea. disinfecting throat lozenges are our friend right now and she is doing a lot better.
Deletewill however consult with cardiologist before introducing verapamil again.
Hi, Peter, Tatjana, and who else is looking at us. Yesterday we started to give malarone to Denis, now we don't see anything new in his behavior, we give him one capsule a day, we don't know if he's okay, he weighs 85k I'll keep you posted on what's going on. He has a little rash on his face, I gave him cromolyn but the stains on his face still haven't disappeared, we hope we can administer it for a few days, maybe we'll see some improvement.
ReplyDeleteHi, Peter, Tatjana, and who else is looking at us. Yesterday we started to give malarone to Denis, now we don't see anything new in his behavior, we give him one capsule a day, we don't know if he's okay, he weighs 85k I'll keep you posted on what's going on. He has a little rash on his face, I gave him cromolyn but the stains on his face still haven't disappeared, we hope we can administer it for a few days, maybe we'll see some improvement.
ReplyDeleteVery glad to see Monty on ski.
ReplyDeleteMH
It was reported in local news too in Hong Kong but the city is too busy to pay attention to it. The test should be made infant-friendly and become a standard test for newborns. They are looking for international partners now to expand it to the 2-6-yo group.
ReplyDeletePeter, did you ever revisit TRH and Ceredist? I know that in your child, sulforaphane has a greater effect but that may not be so for all. Any new options cropping up to treat that same problem?
ReplyDeleteCeredist definitely remains interesting. But, it is not easy to get and even with a prescription is it very expensive (Eur 250 a pack) and does not have a long shelf life. I still have some, but it has long expired.
DeleteThe ultra cheap (Eur 2 a pack) Pentoxifylline is currently providing clear benefits. That is a good one to try.
Thanks again for your help thinking through tests. We got an unexpectedly early appointment with the closest functional medicine doctor. I was frankly not super impressed with his knowledge (he's clearly a clinician by temperament, not a researcher) but he is very open to working with us on a range of treatments and knowledgeable about the most common treatments in the US.
ReplyDeleteWe are doing a two week washout period where we give Paul no supplements at all, before we do blood and urine testing. This will also have the benefit of seeing what (if any) benefit we are getting from the supplements he's currently taking, which are: L-carnitine, methylcobalamin, high-dose folinic acid, GABA, probiotic (not L. reuteri), Vitamin D, Zinc/Copper, Magnesium, sulphorafane. I'd be interested whether you have any thoughts on which of those are likely to be worthwhile.
Once the testing is done, he recommended trying ketotifen, since we do know that Paul has some systemic allergies. The next thing he recommended trying is low-dose naltrexone.
He was not as familiar with bumetanide and verapamil, but said he would read the articles I sent him on it.
In general, it seemed that his "thing" is usually B-12 shots and other methylation support, but he seemed to think that might not work well for Paul, since he is already getting a fair amount of oral B-12 and folinic acid. We will see what the testing shows, but in any case I was glad that he seemed not to fixate on one thing as the solution for all patients. I am happy to do the research work and make suggestions, if he can help me interpret the testing data and write prescriptions.
He also has a hyperbaric oxygen tank in his practice that he said some patients had had success with. My reading of the literature suggests this may be mostly placebo effect. If anyone has relevant studies showing benefit, however, I would be interested.
ReplyDeleteTatjana, we are in the 4th day of malarone one capsule a day, and Denis is a little better, I mean he is happier and there was no need for verapamil, usually until 10 in the morning it was given, now I have it given around 12, but he was not nervous, I ask you it's a little 85kg tablet as he has ....
George, your son is a large adult, you might as well see if you get a bigger effect with a larger dose. For malaria they do use a larger dose if you have the disease. So if you take 2 tablets for a few days, you are still safe.
DeleteHi Tatiana/Peter,
ReplyDeleteI just watched the video in the link that Peter posted earlier regarding the mother who treated her son with Malarone. It seems her son has regressive Autism therefore may not be relevant to a lot of us here, however at the same time if the mode of action is similar to Suramin’s (which she believes to be the case as she thinks the effects are to quick to be from an antiviral effect) then it may be worth trialing anyway.
Kei, it is an interesting video, superficially it is much more Malarone for PANS/PANDAS/Lyme than Malarone for autism. Her case is very specific.
DeleteBut, as the Mother points out, her son was transformed by the first pill, so it is unlikely that the issue was just parasites.
It looks to be like a happy coincidence that Malarone was prescribed.
In the video we see that it took a very long time to get PANS/PANDAS treated. The child does not sound autistic, rather an example of considerable damage done by delaying effective treatment for PANS/PANDAS.
Malarone contains Atovaquone and proguanil. Atovaquone works for lupus. Anti-malarial medications help to control lupus by modulating the immune system.
Any drug that can have a big behavioral impact after a day or two of treatment is interesting. Tatjana has told us that other people have had a similar experience.
In some countries this drug is very easy to acquire, because people take it while on holiday in a malaria zone.
Hi Peter,
ReplyDeleteYes it is indeed interesting. As it happens I have a packet of Malarone sitting in my medicine drawer left over from when I was working in Africa.
I’m tempted to just try it for 3 days and see.
Kei, I think you have nothing to lose and you have a chance to make a big gain.
DeleteLet us know the result.