Today’s post
is a draft list of about 130 drugs and supplements that are used by some people
with autism. It is not a list of recommendations, just a list of what gets mentioned
either in this blog, or is widely known to be used elsewhere. I did not include bleach, but I did include
potent drugs used by some psychiatrists, that may also be ill-advised.
If any item
is interesting, you can use Google to find out about its use in autism. With more obscure ideas, Google will direct you back to this blog.
To add items
I have omitted, just send me a comment.
Click on the
link below and the list should open in a spreadsheet:-
Similar list:
ReplyDeletehttp://www.autismweb.com/forum/viewtopic.php?t=34328
That's a great list. It is more towards supplements, but that is clearly what many people prefer. The author evidently reads my blog.
DeleteI just started BCAA therapy that Tyler has posted about.
ReplyDeleteI am anticipating challenges with catching my son upon waking and before waking as he often gets up as early as 3 AM. By the time I am up, he has already raided any leftovers in the refrigerator.
Is this collegen/BCAA drink something I can leave out, premixed?(He will drink it if it's sitting there.)
Also, is taking this drink too early in the day an issue?
Thanks
Nancy
Yes it can be premixed. Just don't leave it around in the fridge for several days or else the covering of the BCAA which is basically sucralose will degrade, thereby exposing the actual BCAAs which generally tastes awful. The BCAAs themselves are just free form amino acids and won't degrade, but the emulsified sweetener will.
DeleteAlso, as to your other question Nancy, the most important to me for the BCAAs is upon waking as at that time the liver will take out the additional aromatic amino acids in the blood and use it for protein synthesis. This will lower blood tryptophan, tyrosine, and phenalanine. If low serotonin seems to be an issue, you can use 5-HTP in small doses to replace the brain serotonin lost from tryptophan being blocked by the BCAAs. Also, L-Kynurenine, a metabolite of tryptophan which is needed to produce quionolinic acid which is needed to produce NAD+ will also be blocked. This is both good and bad as excess quinolinic acid can function as an excitotoxin and excess amounts seen in some some autism studies suggests BCAA block of aromatic amino acids would help with this problem except that the brain needs some quinolinic acid to produce NAD+. A lack of NAD+ in the body and/or brain will eventually lead to a disease called Pellagra. So to get around this problem, there is a supplement called Nicotanimide Riboside which will raise NAD+ levels directly in the body and brain. As an alternative, you can just use plain niacin, however conversion to NAD+ is rate limited by a NADH recycling enzyme that yields NAD+.
DeleteSo to sum things up BCAN therapy should include:
1 - BCAAs
2 - Collagen/Gelatin (this is optional and most important for the first BCAA beverage of the day)
3 - Nicotanimide Ribosome or if you cannot afford it at least use Niacon
4 - 5-HTP if you think serotonin is too low. Much the time brain serotonin is too high with autism, so this is a judgment call since autism is so heterogenous. I don't use 5-HTP at this time for my son.
Autocorrect on my cell phone really is giving me some problems. In the above post I meant to say "Nicotanimide Riboside" and "Niacin" not Ribosome and Niacon.
DeletePeter, succintly excellent. And anonymous, thanks for sharing - wow, those details! A spreadsheet like this of how the kids present, any genitic info gathered like mthfr status or other snps, birth history, history of maternal infection, response to certain interventions would really be helpful for so many. The biggest problem is trying to figure out exactly what you are dealing with because so many of these symptoms cross react and most of us do no have the benefit of pur kids describing how they feel, what exactly hirts etc. I always thought such a shame with all the information the DAN docs have there isn't a shared database with an algoritihm to narrow down subtypes more and interventions that are more likely to help. Isn't this what we parents do on forums anyway - albeit just snippets of info like Peter says - but so many have been helped in just this way. Imagine if there was a very smart group of parents, like, say a bunch of engineers (hint, hint) who spearheaded a project like this? Is this possible? or is my very unscientific brain getting this all wrong? A girl can dream..ha!
ReplyDeleteTanya, the next step is indeed to identify your sub-group and there will shortly be a post on that. The problem is that nobody collects the relevant data, as you highlighted.
DeleteWhy do MAPS doctors not publish case studies?
Why did the DAN doctor movement never put their patient data together?
DAN/MAPS doctors would be taken much more seriously by other doctors if they collected data.
There is a well-documented autism subtype in which we have my son and Agnieszka's son. Pretty much any drug that helps one also helps the other; so it must be the same "autism", or very similar.
Roger, yes I also saw that paper by Dr Frye and I was surprised. Mentioning any possible link between autism and vaccines does you no favours at all, if your are a researcher, regardless of whether you are correct or not. If you write a blog nobody cares; but if you want to raises millions of dollars for autism research you need to learn from what happened in the past.
Deleteyes everyone knows mthfr and other snps do not exist in a vacuum. I just mentioned that for sake of brevity. I think people get the gist of it. And I'd invite you to come look at my 5 inch binder filled with test results on my son. I think most parents would move heaven and earth to find solutions to make their child's life easier and healthier. You have to have supportive doctors who are willing to write the orders for testing afterall - of course that requires parent persistance, but most doctors refuse.
DeletePeter, I envision some kind of parent reporting database where we can tick off from a list of all information provided on the kids lab testing results to genetic snps to how kids present (allergy/autoimmune type, infections, seizure etc., even the large head circumference you post about) to response to certain interventions and at the bare minimum based on your results using a nice algorithm some very smart engineer minded person can come up with - it connects you with other parents with similar results, so you can compare notes and maybe actually figure things out. After all, most of us by and large, are on our own, because we are advocating for our kids and not a factor.
DeleteTanya,
DeleteYou are absolutely right there. And I know parents who regret spending all that time and finances and energy on testing and more testing and feel that they would have been better off had they spent those resources in other ways...even if that means playing with their kid rather than bundling him.off to lab tests, one after another which ultimately did not yield anything in terms of treatment or probably made matters worse. I am in that heavenly place right now, fixing up appointments and getting tests done. Caught between devil and the deep sea, a rock and a hard place, parents are damned if they do and damned if they dont.
Tanya, I have had similar thoughts.
DeleteThe technical aspect would not be a problem; there are dozens of developers and engineers in the autism parent category who would be willing to help. But then we have the aspect of keeping a database with very sensitive medical information. I think the legal possibilites for that are very limited, and on top of that it requires a lot of tedious management for someone.
There might be more simple solutions, with greater benefits.
What you want is basically to link what you see or know about a person (call it "markers": physical appearance, lab results, genes, illnesses running in the family, behaviour and so on) to a specific "condition" or "dysfunction" (comorbid with autism) which comes with a description and a list of possible interventions.
Put each dysfunction on a website. Start with a section on all known markers. This makes it easy to check if the dysfunction is relevant in your case, and also gives a hint on what to test further if you suspect so. Then add a description, maybe some references too if you are ambitious. Add the possibility to comment so that people can suggest more markers and new interventions. And add a "print" button so you can bring the text to your doctor who will be happy to have such a well-defined condition to investigate.
/Ling
Tyler, as mentioned before, my child has been very hyperactive and nervous since 3 or 4 days ago.Suspended agmatine and he was a bit calmer yesterday. Do you think that agmatine could be causing this? Should I stop it or change the amount? I am in 2/3 a day. Valentina
ReplyDeleteValentina
DeleteHave you been giving your alpha lipoic acid to your son as an antioxidant? I remember your son did not do well NAC, and ALA is similar to it in being a sulfur based compound. But generally I have read that ALA can be a powerful supplement.
It could be Valentina. My first go with it, my son would have great improvements in speech and cognition, but then had irritability issues at the lower dose.
DeleteOne thing agmatine does is inhibit NMDA receptors which will be upregulated in number if dampened down too much. Obviously finding the right equilibrium is tough. Some people cycle it for that reason.
Tyler, Thanks for your response. I have been doing the BCAA therapy with all the components you use and have added the apigenin as well, as Seth has been a big responder to flavenols (and cromolyn sodium and L-histadine so mast cells must be a big player for him).
ReplyDeleteI have not noticed any cognitive jumps, even subtle, nor has speech improved. (I think he is at a speech level similar to what you have described, functional enough to get needs met but not at all conversational.)
Do you think 48 hours would show benefit if there is going to be any or might things improve over time with this therapy?
Again thanks for your thoughts.
Nancy
The BCAAs I did more for irritability, and SIB as their purpose here was to reduce quionolinic acid by restricting kynurenine. It will also reduce dopamine. If your child has no signs of hyperactivity and SIB, it may not help and could even hurt as both serotonin and dopamine in the appropriate levels are very important to learning.
DeleteLast but not least, it took at least a week to really see improvements and if I stopped a few days, rage and SIB would come back which was very frustrating to say the least.
Tyler,
DeleteSeth has a "wiredness" about him much of the time, as if his body cannot enter a state of calm. This has always made me wonder about neurotransmitter imbalance. We have had edginess, rages and SIB for the past few years. The latter two have diminished about 90% by addressing the mast cell issues and continuing to use NAC. The wiredness (coupled with brain fog and inattention) have actually gotten a little worse since starting BCAA. I also started apigenin at the same time as the BCAA additions. The week prior I had started agmetine. (I don't think the agmetine was making his presentation worse.)
Since starting BCAA therapy, my son's stimminess (vocalizations, posturing, restlessness, and overall lack of calm has seemed to worsen somewhat.
Nancy
Could be low serotonin. The BCAA therapy I used is essentially an experimental protocol called Acute Tryptophan Depletion which is used to experimentally study the effects of low brain serotonin levels in humans. In the autism studies employing ATD, irritability actually got worse most of the time. Now why would I employ this with my son then? Well high levels of quinolinate which is produced from activated microglia can also cause problems, so the BCAAS should reduce brain quinolinate via blocking kynurenine and tryptophan, but it will also as a side effect reduce brain serotonin which could be good or bad depending on whether it is high or not in the brain. If ATD reduces serotonin too much, then add 5-HTP which crosses the blood brain barrier easily while the tryptophan and kynurenine are blocked by the BCAAs. Also, another way to reduce the body's levels of kynurenine is via aerobic exercise which induces the expression of a protein called pgc1-a which causes the increased expression of another enzyme that converts kynurenine to kynurenic acid which does not cross the blood brain barrier while kynurenine does when not competing with BCAAs. High levels of quinolinate are associated with depression so some researchers feel this is one mechanism for why exercise reduces depression symptoms. If you want to dump a bunch of kynurenine into the brain, have your kid eat a bunch of sugar (ice cream makes my son rage sometimes) because it will spike insulin which causes BCAAs in the blood to be absorbed into muscle tissue. This is why a "sugar rush" makes people feel temporarily better because more tryptophan, tyrosine, and phenylalanine gets into the brain leading to higher levels of serotonin abd dopamine.
DeleteI am sorry this is all very complicated and is very sitational. Last but not least, an OATS test might give you a hint if quinolinate levels are too high as well as dopamine. If they are not, BCAAs likely won't do anything positive. The ice cream test can also give you an idea if BCAAS will help as well. If your son does bit get super byper, aggressive and/or irritable from then there is likely not a lot of brain inflammation which is a good thing.
Interestingly, the OATS results came back today. Serotonin extremely high. Dopamine on the high end of normal. Quinolinic appeared to be mid-range. HVA/VMA ratio very high.
DeleteOne other thing to consider in lieu of your OATS results is that if there is high serotonin in the brain for a long time, the receptors will downregulate. Employing ATD when serotonin receptors are low will cause a dramatic reduction in serotonin signaling, just as people who are chronic users/addicts of SSRI'S can have massive acute reductions in mood and other behaviors which in susceptible people can cause suicidal thoughts.
DeleteSo if you do BCAAS for a couple weeks and stick with it, I would expect the serotonin receptors would start to upregulate and hopefully normalize over time so that you have the right amount of serotonin signaling and not too little or too much. Also, I am trivializing a few things here as serotonin receptor regulation and it's many types of receptors function quite a bit differently than dopamine which is more straightforward, but the important thing here with serotonin is you don't want too much or too little or else you have a lot of problems with irritability from low signaling, and anxiety if signaling is too high. With a low functioning child with autism, speaking from experience it can be hard to discern irritability from anxiety.
I would stick with it for several weeks, now that your tests suggest BCAA'S may help your child on the medium to long term, even though in the short term I would expect things to be worse.
Nancy, just a few thoughts...Not to take away from your conversation with Tyler, but I too had a bad experience giving my son BCAA's. He was 3 at the time but he immediately was just a lot more agitated, throwing things and started hitting at me, soemthing which he never did before, even during tantrums. All that behavior stopped when I discontinued the supplement after a few days, I knew it wasn't for him. BCAA's really affect delicate brain chemistry and hormones and it's impossible to know which, when, how, how much of whichever will help/hurt--it will turn into a merry go round. My son's behavior almost reminded me of "roid rage" that body builders get---maybe it's all the aminos they take along with the steroids (just kidding:) The supplement was a bunch of different aminos together, not sure what you're using but you might want to try just a few separately, one at a time if you really think they might help with something specific. That will be time consuming too but it might be worth it to research each amino to see the pro/cons. The only amino I've ever consistently had no issues with was l glutamine and mostly used sparingly for gut healing/diarrhea as it too seemed to trigger an upswing in energy, just not the negative incredible hulk energy we had before! Taurine and Mg Taurate may be ones to look into for your son. Just my two cents :) good luck!
DeleteIf there is excessive serotonin in the brain the receptors will downregulate. If you employ BCAAs in this situation, you will have a wild swing in serotonin signaling as you have a lot less serotonin getting into the brain and a lot less receptors for that serotonin which yields very little serotonin signaling.
DeleteHowever, if you block the excess serotonin entering the brain for a while, the receptors will upregulate in response which is a good thing. In a sense BCAAs in this situation is like an opioid addict going cold turkey and going on high dose naltrexone or else someone abusing SSRI's for decades who abruptly stops using them and then uses buspirone which reduces serotonin signaling even further.
If you want to prevent this cold turkey effect with BCAAs, add in 50mg of 5-HTP and reduce it gradually as the goal is to increase serotonin receptors which in most autism seem to be decreased, likely as a result of maternal inflammation as high levels of serotonin in the blood of the mother are a sign of chronic inflammation. Trying to increase serotonin signaling with SSRIs won't solve the long term problem as more serotonin in the synaptic cleft will just downregulate serotonic receptors via presynaptic autoreceptor feedback.
If you do BCAAs and your child goes into a total rage, it is likely for the reasons mentioned above. Low dopamine from BCAAs can also acutely cause behavior problems as well, but in the long run unless there is some genetic dysfunction that prevents homeostatic upregulation of receptor count and density, you should be able to improve things by counterintuitively reducing levels of the neurotransmitter whose signaling you are looking to improve.
Too many parents will let their emotions get the better of them and judge therapies based on snap judgements rather than trying to understand the science and having some patience and like probably every parent in this situation, I would include myself as well. There are plenty of drugs that will acutely reduce SIB but come at the cost of horrible long-term side effects and there are also therapies which take time and may even be difficult at first, but which can improve things in the long term. If people.judged chemotherapy the way some people approach autism therapies, nobody would ever do chemotherapy because acutely it is an absolutely miserable experience,.but in the long-term it can cause many cancers to go into remission.
Just to be clear I am not judging anyone here, just putting some perspective here in terms of how parents new to this mess should approach the very gray area of autism interventions so they don't make the same mistakes many of us who have been dealing with this for 5-10 years or longer have made in the past due to the strong emotions involved in the situation.
Kritika, yes, I am giving ALA as an antioxidant but also as an antiinflammatory. Never would use ALA as a chelator, I think is always dangerous, no matter how you do it. So,300 mg a day is the dose I use. My experience with NAC was not good but Iam afraid that was due to the dose which was high. For my son, high doses of sulfur compounds are not tolerated, neither for me also, we have MTHFR mut. Today,my son is returning to normal.For now, I decided to suspend agamtine, unfortunatley. Valentina
ReplyDeleteValentina,
DeleteI have to use an anti-inflammatory and antioxidant. My son had mixed response to NAC. I am off to trial ALA, though on internet there is so much of talk about redistribution of metals with ALA and NAC, whatever that means. It scares you as the least you want now is more trouble. I am foregoing agmatine trial.as its blood pressure lowering effect might not be desirable for my son right now.
Thanks for your response.
If I order supplements online I usually get it from there. They seem to be one the the cheapest around and it's $5 for shipping no matter how much you buy. I think they have a promotion right now if you buy $50 worth of stuff then the shipping is free.
ReplyDeletewholesale Nutrition Supplements