I started this blog when I stumbled upon a research paper, by a French Scientist called Dr Ben-Ari. It showed that a long trusted diuretic drug, Bumetanide, could be safely used to reduced autistic behaviours. I then looked for other drugs that might be similarly safe and effective, and started this blog to document what I found.
I then recently came back to see why potassium also seemed to play a role in autism:
I wrote to Dr Ben-Ari about my observation about potassium and he kindly wrote straight back. Sadly most researchers do not repy to emails.
I was already aware from his papers, that they we giving potassium syrup to those children found to have low potassium in their blood.
Monty, aged 10 with ASD, is taking bumetanide but has normal potassium level in his blood. I found a further improvement followed a little extra potassium. Ben-Ari second point suggests that this improvement may also be due to the same NKCC1 transporter, that is the target of his bumetanide therapy.
Anyway, I have some extra support to continue Monty's banana and orange juice rich diet, with an extra 1g of extra potassium on the side.
http://epiphanyasd.blogspot.com/2013/03/for-5-years-i-have-been-learning-and.html
http://epiphanyasd.blogspot.com/2013/03/bumetanide-how-water-pill-can-reduce.html
I then recently came back to see why potassium also seemed to play a role in autism:
http://epiphanyasd.blogspot.com/2013/08/potassium-may-play-important-role-in.html
I wrote to Dr Ben-Ari about my observation about potassium and he kindly wrote straight back. Sadly most researchers do not repy to emails.
yes of course K+ is important and we are often adding syrup as we cannot tolerate too reduced levels of K+ (vascular issues)
in addition note that K+ levels also modify the actions of the transporter in which we are working
I was already aware from his papers, that they we giving potassium syrup to those children found to have low potassium in their blood.
Monty, aged 10 with ASD, is taking bumetanide but has normal potassium level in his blood. I found a further improvement followed a little extra potassium. Ben-Ari second point suggests that this improvement may also be due to the same NKCC1 transporter, that is the target of his bumetanide therapy.
Anyway, I have some extra support to continue Monty's banana and orange juice rich diet, with an extra 1g of extra potassium on the side.
Apart from having to take an adequate amount of potassium, the potassium will go right back out of the body for various reasons, especially when there isn't sufficient magnesium to keep it inside the cells. When outside the cells it is quickly secreted by the kidneys. Other factors that make one lose potassium are chronic injuries, leaky gut, inflammation, stress (specifically aldosterone), too much salt, pressure (I think so), overactive mind, spasms, etc. I have gone off all other medications and only take potassium, magnesium, keeping hydrated and L-tyrosine and sometimes Ashvaganda - in addition wear permanent custom earplugs, and clothes that are comfortable and prevents the wind from blowing on my skin. The only element that is hard to avoid is PMS, which causes a lot of sensory overload, yet potassium also reduces the symptoms greatly.
ReplyDeleteHi,
ReplyDeleteYour blog is great. My name is Seth Bittker and my son has ASD as well. I have seen the same thing you did with respect to behavioral improvement with supplemental potassium. I think the behavioral improvement is due to the fact that potassium is necessary for release of oxytocin into the brain.
There is a lot of research on oxytocin right now with autism, but I think that it will prove to be a dead end. The real question is why do we have this functional deficiency of potassium in autism? I think the answer is that autism is caused by over-activated calcium channels (too much calcium) and potassium can help offset this. You can see this in a lot of the genetic syndromes associated with autism like Williams syndroms, Timothy syndrome, etc.
How did our kids get over-activated calcium channels and damage from this? I think the answer is too much vitamin D supplementation as babies and toddlers. They get vitamin D through vitamin drops, formula, milk, vitamins, and other vitamin D fortified foods now. If you look at what they get, it is huge regular doses in IU per pound. The main reason they get this is because Institute of Medicine set the DRI for vitmain D too high and American Academy of Pediatrics took on the job of pressing everybody to follow these guidlines. I have a book about this on amazon and would gladly discuss with others.
Hi Seth
DeleteIf you are interested in calcium channels and autism, you will like this site:-
http://www.autismcalciumchannelopathy.com/
it is by a mother, who shares your belief in a calcium channelopathy.
I think there are many separate types of autism. Some mild ones caused by food allergies really should not be classed as autism; then when a child is “cured” it gives false hope to parents of kids with disabling autism. Unfortunately for us, autism comes under psychiatrists. Many doctors regard Psychiatry as a field 50 years behind other medical specialties. I tend to agree.
To solve a problem you first have to accurately diagnose it. To do this you have to be very specific and look at fine details (biomarkers). In spite of what psychiatrists tell us, there already is a great deal of science allowing you to identify individual sub-types of autism. Then you can classify kids with ASD into their phenotype and look for therapies that fit them. The current approach is totally amateur.
Not living in the US, I can pay absolutely no attention to the ever changing amateur DSM definitions for autism.
Have you measured your son's potassium level ? My son has a high level in his blood, but that does not tell you what is going on in the brain. From my experience very high potassium level in blood = better behaviour. We should remind other readers that excessive levels of potassium will be very harmful.
What therapy do you suggest ? Calcium channel blockers ??
Peter
Hi Peter,
ReplyDeleteThank fo the tip on www.autismcalciumchannelopathy.com. I totally agree with your statements above. My son's potassium is on the high side, and I think this is generally true of autism. Calcium is excitory. Potassium is relaxing. Once a neuron has been polarized by calcium rushing in through calcium channels, you need potassium to de-polarize it. The body is trying to compensate by raising potassium levels due to overactive calcium channels. The reason calcium channels are overactive in many cases is past supplementaion with vitamin D.
On your question of what to do, I want to acknowlege I have in no way cured my son, but given the above and related hypothesis about vitmain D, I think the following are worthy suggestions and I think they help him:
1) Avoid vitamin D supplemention and fortification.
2) Do not supplement or minimally supplement with calcium. Relatively ow calcium diet is beneficial.
3) Provide magnesium liberally (to offset over-active calcium channels). I have not experimented with calcium channel blockers as I think magnesium may be nature's best calcium channel blocker.
4) High potassium diet. Can also supplement with small amounts of potassium as you know (large amounts can kill and even moderate amounts seem to make my son decision challenged).
5) Supplement with tiny amounts of zinc and selenium. Lots of magnesium can lower these.
6) Take some anti-oxidants to minimize oxidative stress from past damage. I.e. some vitamin C.
7) Provide methylation helpers if needed: methylfolate, methylcobalamin.
8) Help with energy efficiency if needed (CoQ10, cartintine). If you have no energy, you can't maintain you ion gradients.
9) Provide probiotics. The gut is linked in with immune dysfunction. High vitamin D skews immune system (high Th2 is one effect).
10) Pray a lot and try not to do damage as we are experimenting with what works in our kids.
How can we exchange email addresses?
Seth
There have many many experimental mice sacrificed in autism research, with very little to show for it. Mice are different from humans. You should not have to play at medicine, it should be done by researchers. The problem is that after 60 years of trying, they have not got very far. Does that mean autism is untreatable? Evidently, in some cases it is partially treatable. Sadly, it may take another 60 years to fully understand many types of autism. By that time it will be too late. You cannot blame people for trying to help their child with such a disability.
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