Much
research is based on experiments with mice rather than humans, for obvious
reasons. This was the case with Dr
Catterall’s recent successful trials of a long established drug called
Clonazepam, in two mouse models of autism.
Well, it
turns out that his findings are applicable to humans.
With a
dosage of around 1mcg/kg (that is micrograms per kilo) twice a day, the same
kind of positive behavioural/cognitive changes Catterall found in mice are indeed evident in
some humans.
The question
remains as to the long term effect of using this drug; in very much higher
doses, there are negative consequences.
Comparison with dosage for other
conditions
·
As
a treatment for seizures, the maximum dosage in children for 0.2 mg/kg/day
·
As
a treatment for panic/anxiety the typical adult dose is 1mg with maximum of 4
mg
·
For
bipolar disorder in adults the maximum dose is a hefty 20 mg
Clonazepam
use in the above conditions is associated with both tolerance (gradually needing
a higher dosage to maintain effectiveness) and being habit forming (addictive).
The autism dose appears to be just one
hundredth of the maximum pediatric anti-seizure dose and is perhaps too low to
cause problems.
Increase in Serotonin
Not only
does Clonazepam affect the neurotransmitter GABA, but it has a known secondary
effect on serotonin, the “happy hormone”, which appears to be low in the autistic
brain.
In the US
the trade name is Klonopin and it appears to be called “K-pin” among those who
abuse it, for the happy effect.
In most of the
rest of the world it is called Rivotril.
Nobody knows.
Tried Clonazepam 0.025mg in one dose, in the evening, before sleep. After whole 3 days, as you predicted, change was amazing - she become self confident, a bit naughty, but in some joyful, playful way. Started to play more often with friends (by report of teacher end assistant in school). They both reported that she is different, but in good way, even she is harder to manage with (i didn't tell them about new therapy in that time)
ReplyDeleteStarted to play differently, not in pattern she's developed over the years (she has great imaginations, wich is a plus, but has stereotype of ideas in the play).
First of all, we noticed that she is capable to sense odors (she had some kind of anosmia before), than she managed to catch a rhythm to dance (that was a real wow!).
She was speaking with people in the shop (briefly, but adequately)...
There is much more...
Change is still present, but after three weeks are slightly paler . There are not so intense. I'm still overwhelmed, just wont to know if I am missing something.
Do you have some tips, Peter, please?
P.S. Thank you, thank you, thank you....
The logical next step is to add bumetanide, which has a greater effect but the same mechanism (making gaba inhibitory). Also vary the clonazepam dosage and time of dosage to maximize the effect. I give it in two or even three doses.
DeleteCan you both relay how you've been divided the Clonazepam dose? Are you starting with a 1 mg tablet and diluting in solution or do you have a scale sensitive enough to get down to 1/40th of a mg? Thanks.
DeleteNeil
Neil, you dissolve the tablet in a 100ml medicine bottle, Mix very well, a cheap hand held electric frappe mixer is very useful, it fits inside the bottle. Then use a syringe to measure the dose you want. The tablet does not dissolve very well and you get a suspension. But this method does work. Keep the bottle in the fridge. A single daily dose is the simplest method. It takes three days to reach a steady level in the body, due to the long half-life of clonazepam.
DeleteHi Peter, sorry my math is terrible. So 1 mg pill in 100 ml of water...
Deletethen 1 ml = how many mcg? I'm sorry!!! I should know this probably!!
Audrey, 1mg = 1,000 mcg. So in 1ml you have 1/100 th of 1mg which is 10mcg
DeleteHi! I just want to check my math with you for the dosage. I have a .25mg tablet of clonazepam. I dissolved in 25ml of water and then gave my son 2.5ml of water for dosage of .025mg ... My son is 14. 6 feet tall Thanks in advance!!!!
DeleteYour math is fine you gave 1/10 of a pill. I think you will need a slightly higher dose. I use 0.03mg in a 14 year old weighing 55 kg. It is weight rather than height that usually matters. Recalculate your dose and give this higher dose for 3 days. That will produce a stable level in his blood. If he becomes anxious or aggressive your dose is slightly too high, so reduce it slightly.
DeleteDo you believe it would be worth a try for an Apsie to try this even though they found no results through Bumentanide 2mg after taking it for 3-4 months? I happen to be more of the anxious type in terms of the different kinds of Asperger's with a pretty decent social awareness even though I have no ability to read facial expressions or body language pretty much whatsoever. So far I haven't really seen much benefit from substances pertaining to GABA aside from alcohol, I've even tried the benzo Etizolam before with a minimal benefit at best. Although I have tried taking Phenibut more than a couple of times and only once did I feel a relaxed, smoothed out feeling that surprisingly took a few different attempts to achieve, pretty strange that this only happened once and it wasn't even my first time trying it.
DeleteBtw my weight is around 80 kg so if I were to take 80 mcg would be a good dose to try out?
The dose of clonazepam is so small, it appears to be free of any harmful long term effects. So it is worth trying even though the chances of it helping may not be high - there is no way to predict responders.
DeleteThe feedback I have received suggests that most responders find an even lower dosage optimal.
In your case I think 50 mcg is the place to start. You will reach a stable level in 3 days, so in 3 days a responder would see a benefit.
Another GABA drug that some Aspies respond well to is Baclofen at lower end of the regular dose. However some other Aspies have a negative response.
Thank you for sharing your knowledge, Peter. Also I have been looking into Baclofen as well as Pantogam Active but I believe I will be trialing microdosing clonazepam first. Btw what would be considered a lower end regular dose for Baclofen?
DeleteThere are people using Baclofen for anxiety but the big off-label use seems to be regarding alcohol addiction (sometimes with anxiety).
DeleteThere were a series of comments on this blog from a UK paediatrician who discovered Baclofen helped most of his/her Aspie patients. As usual, she did not give a comprehensive explanation, but the key point was she found no long term problems. Sometimes you have to increase dosages to maintain the effect, this was not the case.
She did not feel she could continue long term prescribing without some scientific justification, she was worried about getting into trouble with the medical regulator, hence anonymous.
I would have thought 20-30 mg a day, split into 2 or 3 doses, would be what that paediatrician was using.
With large doses you need to start slowly and later stop slowly, to avoid side effects.
It is always best to find the lowest dose that is effective.
Hi Peter
ReplyDeleteI am going to start on bumetanide first and then clonezapam as the side effects of bumetanide seem to be minimal expect diuresis, I saw a genetist who asked me to stop all supplements before going for genetic testing
Was worried about the addiction effects of clonezapam , also wanted to share that I showed clinical trial info to neurologist who then prescribed both so u can get them in a liquid form from pharmacy as it is easier to measure with syringe
Thanks
BK
It is good to start with bumetanide. The dosage is very simple.
DeleteWith clonazepam the dose is tiny and so I think the chance of side effects is very very low. The problem is that if you do not see an effect, you do not know whether you just have the wrong dose, or the child is just not a responder.
Actually I wondered that same thing in regards to the suforaphane. I have not been able to figure out the dosing for a 160 lb guy. I have been giving 1 capsule (1.5 g) of Super Sprouts in the morning but wonder if I am going too low.
DeleteActually I wondered that same thing in regards to the suforaphane. I have not been able to figure out the dosing for a 160 lb guy. I have been giving 1 capsule (1.5 g) of Super Sprouts in the morning but wonder if I am going too low.
DeleteIn my son, who is half the size of yours, I am giving a dose twice as large. I would increase the dose and see if there is a significant mood change within an hour. If there is no impact it may be that he is not a responder.
DeleteThe results of .5mg were astonishing for me, instantly improving my execution function, mood and outlook. All the symptoms of my Asperger's Syndrome receded. I can't find any trials of low dose Clonazepam using AS adults however. I had to fight very hard to find a doctor willing to trial me on low dose Clonazepam. The results have astonished everyone who knows me well and I know have a supportive doctor. The ignorance about this really saddens me. So much unnecessary suffering and waste of potential because of that ignorance.
ReplyDeleteReading this is very reassuring to me. My doctor literally just prescribed this to me and I'm starting it today. Here's hoping that I don't have a repeat of Concerta (which had been on the "no" list since I was 6....)
DeleteThis is heartening. At age 31, I just determined that I have adult ASD. It went undetected for a long time because symptoms often manifest a bit differently in women and even though I didn't know what it was, I always tried to hide any unusual "personality traits" I had out of fear. Just this morning I mentioned to my doctor that I have anxiety and she gave me Klonopin without me even asking (!!) I tried SSRI's before, when I thought I just had OCD/anxiety/depression (no inkling of ASD), and they didn't do much besides dull some of my thinking. I am cautiously optimistic and will post results when I have some.
ReplyDeleteAnd you use water as your "solution" yes?
ReplyDeleteYes, you add the tablet to water and create a suspension. It does not dissolve, you just get fine particles suspended in water. This is why it has to be well mixed, ideally with a hand held frappe mixer which will fit inside the bottle with the suspension.
DeleteDear All, I have just started reading about this. Can I ask where 1mcg/kg dose is coming from? In Catterall's research the beneficial dose in mice is 0.05 mg/kg. I could not find any information about estimated dose for human. Could you please tell me the source of 1mcg/kg dose?
ReplyDeleteThank you very much.
The source is this blog (i.e. human experiments). You will see in later posts/comments that an even lower dose seems to be optimal in most responders.
DeleteI would say more like that the "sweet spot" is most likely to be found at 0.5 to 0.7 mcg/kg. Once a day seems to be fine.
Catterall has said that it should be just a narrow band when it might help. He told one reader he expected the human dose to be about one tenth of the regular anxiety dose. He had no plans for a human trial.
Peter, is this all trial and error to determine the dosage sweet spot ? Do we start with 0.5 mcg / kg / day and then titrate up to 0?7 mcg / kg / day ? As silly as this might sound how do we know if a particular dose is "working" or not ? What are some immediate effects of a "working" dose (so I know to stay at that dose) ?
DeleteMy son is nonverbal and significantly cognitively impaired so he won't be able to verbalize his feelings - this will be entirely on me and my subjective opinion on changes I might see.
Thanks !
GRT, you will notice whether your son responds to low dose clonazepam or bumetanide by noticing new behaviors, things he does for the first time, other people would also notice.
DeleteYes, I would suggest you start at 0.5mcg/kg for three days and then slowly increase until you notice a positive effect. Slightly above the effective dose there is a zone with a negative effect. So if your son shows anxiety or aggression, he is a responder, but your dose is too high.
Due to the long half-life of this drug, it takes 3 days to reach a stable level in your blood.
Since this post was published, low dose clonazepam has been proposed for another type of autism.
It is the case for most readers that their child cannot give feedback on therapies. Only people with Asperger's can really give good feedback. I have figured out which therapies work for my son, even now this is the case. I take input from his teachers and assistants who tell me when he does something remarkable. I do not tell them when I start a new therapy, because I want unbiased, unprompted feedback.
Hi Peter, I am actually a psychiatrist and might plan a study in this. I thought he Prof Catterall was planing a research too. But he might have changed his mind, not sure. Yes he said that it would be roughly 1/10 of the anti- anxiety dose. But anti anxiety dose varies between 0.25-4mg although people needing 4 mg are usually very high in anxiety and even can be described as agitated. So I would say that the typical antianxiety dose I would prescribe for my patients would be around 0.5 twice a day.
ReplyDeleteIf I plan a study, it has to be on adults though, as I'm an adult psychiatrist. I'm sure adults with Asperger's would love to help. Only pitfall is that majority of them were already given a benzodiazepine before they come to a psychiatrist, so their gaba receptors are not benzodiazepine naive.
I will take your therapeutic window suggestion 0.5-0.7mcg/kg into account. It is so sad that science leaves people alone and doctors and scientists are not that motivated for research. This could be a basic reasearch for example, not too complicated.
Good luck with your study. If the dose is slightly too high, there is a negative reaction with anxiety and aggression. It takes three days to see the effect, due to the long half life. I use a single daily dose, but a US doctor reader of this blog finds it works better for his son when the dose is split into two daily doses.
DeleteAnother drug nobody is trialing is the standard baclofen drug. A UK pediatrician left some comments about how many of his/her patients with Asperger's responded very well, but without any formal study published did not want to keep prescribing it and did not want to their own study and publish the results. Rather sad.
Not all Asperger's respond well, but some do.
Anon... I have aspergers and I tried the low dose clonazepam, it made me arrogant as hell and I absolutely HATED PEOPLE on it, it is not recommended for aspergers in my experience (34 year old adult and been diagnosed since I was like 12 years old).
ReplyDeleteI agree with this very much .. my son was not able to sleep on a dosage of 2 mg but when we tried 0.5 he slept the full night, there is something about the smaller dosage in this particular medication, i am willing to give it a try and a small dosage.
ReplyDeleteHi I am an adult with aspergers and extreme anxiety. I want to try the low dose clonazepam and see if i get any improvement. I weigh 150 pounds, (so about 68 kilos). This means I would need a dose of 0,068mcg? Also if my doctor lets me try this, and i get liquid clonazepam, how do i take it? If I drink it wont it taste awful? Let me know thank you!
ReplyDeleteMy symptoms worsened on low dose clona (I have aspergers), however I do not have social anxiety so I might respond different than you.
DeleteAll regular clonazepam seems to come as tablets, for a liquid you would need a compounding pharmacy. The crushed tablet has no taste, the syrup would taste of the syrup base the pharmacy used.
DeleteFor anxiety you might need the full dose clonazepam, but at that dose it is an addictive drug. The low dose does not have these problems.
My daughter is 16 (40kg). I have been giving one 0.5 mg Clonazopam Oral disperible tablet per day for last 15 days. But I see no reduction in anxiety, aggresivenes and panic disorder. Am I giving a very high dosage? Pls advise me the correct dose. Thanks in advance
ReplyDeleteThis blog covers the micro-dose of clonazepam that corrects a dysfunction present in Dravet Syndrome and some idiopathic autism (the alpha 3 subunit of GABAa receptors).
DeleteThe microdose is between 0.5 and 1 micro gram per kg. Most people seem to be at the lower end.
So a 55 kg child with autism might respond to a dose of 30 micrograms which is 0.03mg (milligrams).
So your daughter's daily 0.5 mg tablet would last my son 17 days.
Regular dose clonazepam works in a slightly different way. I presume your doctor is prescribing for this purpose, if so, you should refer back to him/her.
Thanx for response Sir, My daughter (16yr /40kg) has autism but no Dravet Syndrome. For aggression, anxiety etc, the Dr initially prescribed liquid Fluoxetine 5mg and Arpiprazole Tab 0.25 mg OD.It worked for 4 months but later the intensity and frequency of aggression and anxiety increased. So the Dr. stopped Fluoxetine and added Clonazopam 0.5 mg Oral dispersible tab SOS. But we find that aggression etc increased after this. From this blog we realise we are giving her high dose. We want to try microdose. The Dr is neither aware of this nor is receptive to such new ideas. Pls advise us about the mico dose. Thanx and Regards
DeleteAnjana, anti-psychotics like Arpiprazole (Abilify) seem to cause lots of problems, as do larger doses of Fluoxetine (Prozac). It is much better to find the biological cause of the aggression/anxiety, but this is not easy.
DeleteThe micro-dose of Clonazepam would be about 20 micrograms (in milligrams this is 0.02mg). After 3 days a stable level is reached in the blood and a responder would show a benefit. If there is no response you could increase to 25 and then 30 micrograms; if still no benefit than she is not a responder.
Aggression and anxiety can have different causes and anxiety has many forms; in my son the solution was NAC and Verapamil.
It looks like many girls with more severe autism do actually have an identifiable genetic disorder, so this is worth investigating (much more so than for a boy).
This comment has been removed by the author.
ReplyDeleteHi Peter... I want to start a trial of micro-dose Clonazepam. I am having trouble understanding the math. Here's how far I've gotten. I took a 1mg. tablet of Clonazepam, crushed it well, and then used the mini-milk frother to mix it all in a 100 ml flask.
ReplyDeleteNow for the tough part (please don't laugh). I have a small syringe that can measure up to 2 milliters, how do I get .0?ml out of the bottle accurately... Even the 1ml syringes don't give me 0.0?ml measurements. I am so frustrated with myself! I would appreciate any help you could offer. Thanks
I can tell you how I try to accurately measure small doses.
DeleteSome US readers get a compounding pharmacist to make them micro doses in pill form, this is the best idea. I know one US doctor reader who has been doing this for a few years with his son.
I go to the pharmacy and buy a 10 ml syringe, there is no needle required and my pharmacy is very willing to sell it for a trivial amount of money.
Clonazepam tablets do not dissolve well and you really just produce a suspension of particles. This is why it is best to start off with a lower dose pill. You can reasonably accurately break the pill to contain 0.5mg.
I put 0.5mg into a 100ml bottle. I mix very well and withdraw from about 1/3 of the way up the bottle 6ml of the liquid.
This 6ml would ideally contain 6/100 x 0.5 mg which equals 0.03 mg of clonazepam. This is for a 50-60 kg person.
This process is far from perfect and given the choice I would get a compounding pharmacist to do this.
Hello Peter. Thank you for helping people in trying a new approach to autism. I have a 6 years old son with autism. He is a happy boy always smiling and not aggressive. However, he can not speak and is still using nappies. He is quite hyperactive and I believe that is preventing him to learn basic speaking skills. I myself take Clonazepam oral liquid which is called Rivotril in the country where I live. Rivotril liquid contains 2.5 mg/mL clonazepam (one drop contains 0.1 mg clonazepam). 4 drops a day is enough for me. I would like to try it with my son with a view to reduce his hyperactivity in the way he would be able to observe the world around him and perhaps learn some communication skills. He weights 20 kilos. I am wondering what would be the right micro dose for him. I understand that one drop equals to 0.1 mg, so half drop would be 0.05 mg. So I would be very grateful if you could tell me the best way to get the right initial dose for him. Thank you.
DeleteMarcell, your Rivotril drops are in a solution of propylene glycol. Clonazepam does not dissolve in water.
DeleteBased on the dosage that seems to work in those who respond, I think for 20kg you would need 0.012 mg once a day. Due to the long half life of this drug it will take 3 days to reach a stable level in the bloodstream, so it would show effect after 3 days.
You can actually buy propylene glycol, it has many uses. It is even used to make propolis drops, when they do not contain alcohol.
You could dilute your propylene glycol-based Rivotril with more propylene glycol to make a much weaker solution and then use this to make the tiny dose you want.
I would also suggest you make trial of bumetanide, which I think is very likely to be beneficial.
Thank you very much, Peter. I will try to buy propylene glycol to make that weaker solution. Again, many thanks for dedicating your time to help people.
DeletePeter, do you think micro doses of clobazam could work in a similar way?
ReplyDeleteThe answer is yes, to quote from the research.
DeleteAt low doses that do not induce sedative or anxiolytic effects, we found that clonazepam, clobazam, and L-838,417 all improved autistic-like behaviors and cognitive deficit in BTBR mice, supporting the hypothesis that a2,3-subunit-selective up regulation of GABAergic neurotransmission could be an effective treatment for these core features of autism."
Thanks Peter. Do you think the dosage would be the same as for clonazepam? I think the smallest tablet I can get is 5mg, which makes it a bit more tricky to measure the microdose. Any tips?
DeleteThe maximum standard dosage for clobazam is considerably higher than for clonazepam (eg for seizures in adults, 60mg/day compared with 20mg/day) so I wonder if a higher microdose would be indicated?
DeleteThe effective dose is likely to be tiny, possibly 1/20th of the smallest dose normally used. That smallest normal dose might be a fraction of the smallest tablet. Some tablets are split into quarters. The half life is quoted as 18 hours, so it will take 2 days to reach a steady level in the bloodstream.
DeleteThe only way to find the effective dose would be to try different doses. You also have to consider that not all people show a benefit from this therapy.
My son 18 years old is high functioning autism, doctor prescribed 2mg as needed. He sleep straight through the night. Helps with his repetitive behavior.
ReplyDeleteHi Peter,
ReplyDeleteMy children's pediatrician says she will consider prescribing low dose clonazepam for my son if I let her know of another doctor who is doing so. They are threatening to raise his Abilify which I am convinced will sedate him and worsen his condition. Please if anyone can direct me to the name of a doctor I would appreciate this.
Melanie, I know several doctors have tried low dose Clonazepam on their child with autism and one has used it for a few years.
DeleteThe only non-anonymous doctor on this blog is Agnieszka, so you could ask her. Her email address appears several times in posts she wrote.
In the search this blog box (top right) just enter her name
Agnieszka Wroczyńska
Thank you Peter. I have contacted her and will await her response. I have another question which I hesitate to ask because I feel I am unable to understand much if what this community shares not having a background in science. However if there is a chance my questions might help my son I am more then willing to appear stupid. My kids and I are currently responding well to Lysine and low doses of niacinamide, riboflavin, and copper. We have issues with connective tissue (lysyl oxidase) and histamine. We have zero tolerance for even a mg of zinc. Recently I have discovered that Grape seed extract is hugely beneficial for my joint paint, bacterial issues, histamine intolerance and tolerance for starches/carbohydrates. From what I understand it is an MMP9 inhibitor and MMP9 is a zinc dependent enzyme. I also came across a study entitled amniotic fluid mmp-9 and neurotrophins in autism - Abdullah, Pearce. The only issue is that I feel the grape seed extract has the unfortunate side effect of making me anemic. Are there other natural MMP9 inhibitors that do not lower iron/heme? Also does what I have shared point to an appropriate medication currently being prescribed by doctors off list for autism that I could point my pediatrician to? Thanks.
ReplyDeleteMelanie, MMP9 is linked to autism, among many other conditions such as joint pain. I suggest you and your kids do genetic testing.
DeleteMost MMP9 inhibitors are experimental drugs, but tetracycline antibiotics like doxycycline and minocycline are effective.
I suggest you contact Prof Iryna Ethell of UC Riverside School of Medicine, who wrote the paper summarized in the link below:-
Matrix Metalloproteinase 9 Enzyme Linked To Autistic Behavior
https://www.science20.com/news_articles/matrix_metalloproteinase_9_enzyme_linked_to_autistic_behavior-141165
Next, the researchers plan to understand how MMP-9 regulates synapse stability inside the neurons. They also plan to find drugs that specifically target MMP-9 without side effects such as new tetracycline derivatives that are potent inhibitors of MMP-9 but lack antibiotic properties.
"Although minocycline was successfully used in clinical trial in FXS, it has some side effects associated with its antibiotic properties, such gastrointestinal irritation," Iryna Ethell said. "We, therefore, plan to test new non-antibiotic minocycline derivatives. These compounds lack antibiotic activity but still act as non-competitive inhibitors of MMP-9 similar to minocycline."
An MMP9 inhibitor is already in the polypill in the form of Agmatine. https://pubmed.ncbi.nlm.nih.gov/17588309/
DeleteWell spotted ! Another benefit of making more eNOS.
DeleteAgmatine inhibits matrix metalloproteinase-9 via endothelial nitric oxide synthase in cerebral endothelial cells
https://www.researchgate.net/publication/6249707_Agmatine_inhibits_matrix_metalloproteinase-9_via_endothelial_nitric_oxide_synthase_in_cerebral_endothelial_cells
Hi Peter,
ReplyDeleteThank you for sharing all of your knowledge in this.
My son is autistic and was prescribed Risperdal 5mg 2x a day to try and help manage his severe aggression, self-injury, and anxiety by his neurologist. It worked well for the first two weeks and then the behaviors started to come back. Two days ago, his neurologist also prescribed Clonazepam 0.5mg 2x daily as well to help address his anxiety and hopefully the aggression too. They are the disintegrating tablets as he cannot swallow pills. I would like to try micro dosing for him to see if it would help him before giving him the full dose prescribed.
My question is, if these are the disintegrating tablets and we dissolve them in water to micro dose, do you think they will be as effective as the regular pills? And if so, I'm not sure how much to give him. He is 8 and weighs 80lbs.
Thank you so much for taking the time to read this. I truly appreciate it.
- Noel
Noel, the regular pills do not dissolve well, you just get a suspension which you need to mix well, to get an even mixture. You pills might even be better.
DeleteI would find a 100ml glass bottle (cough syrup, pain reliever etc) and syringe.
Add one 0.5ml pill to 100ml of water, let the pill dissolve, mix very well and measure out 5ml using the syringe. Repeat at the same time of day for 3 days and then you reach a stable amount in his bloodstream. If the dosage is right and if he is a responder, at that point there should be a visible improvement.
If there is a negative response the dosage is a little too much.
If there is no response, either the dosage is too low, or he is not a responder to this treatment.
Thank you so much, Peter! I will do that.
DeleteI have another question if you don't mind. I saw in another comment above that you have had good results using NAC with your son. Would you mind sharing the dose you give him? I think he is older than my son (mine is 8), so I know the dose will probably be different, but I can't seem to find a chart on dosage levels for children online.
Thank you again! This is all so helpful!
Noel, when I started using NAC my son was 9 years old. My dosage was 2,400 mg a day split into 3 doses. If your son can swallow large tablets, the best NAC seems to be NAC Sustain, which is a time release version.
DeleteGreat. Thanks again Peter!! I appreciate your help so much.
DeleteAs someone that has been tormented by sensory issues and low levels of serotonin klonopin gave me a beautiful and authentic take on life that was only available in glimpses when i was taking no meds. Before taking this medication i was going thru life trying to control every sensory possible and this need to control sensory ruined alot of relationships on my life as I could not process regular emotions necessary to decelope meaningful relationships without having an overload or shutdown. Its worth noting that b4 i had tmj from my constant stress response to stimuli, klonopin gave me the option to observe my situation from afar and cope with stress in healthy manners.
ReplyDeleteHello, my son is 4 years old asd, with silent epilepsy , during sleep, 17kg, he is on topiramate 25+0+15mg, lacosamide 3.5+0+3.5mg
ReplyDeleteBut he is getting hyper, laughing spells, alot of verbal stimming , also fits are not under control, kindly guide me, can i start revotril drops with these medications for my son
Nk treating your son's epilepsy effectively is very important and for this you need a good neurologist.
DeleteYou also asked in another comment about fish oil and cbd oil in epilepsy and autism. Some people do find certain types of fish oil helpful in autism. Fish oil contains EPA and DHA, and the effect will vary between how much EPA and how much DHA is contained. You could read about the use of EPA/DHA in attention deficit hyperactivity disorder (ADHD). High EPA fish oil increases NAA (N-acetylaspartate) which should be helpful, so I would try high EPA fish oil.
I would ask your neurologist about CBD oil.
If you want to treat your son's autism the best place to start is a trial of bumetanide.
Dr Nk,
DeleteNote that lower carb diets are sometimes helpful for epilepsy. Sometimes it doesn't have to be the full keto (no carb) version, so perhaps reducing sugars and starches in the diet will help (try searching for "Modified Atkins Diet").
Note: I am not a doctor, and don't know if there are any studies with this particular kind of epilepsy, so this is just a suggestion / idea for research.
Aspie2
Hello, tell me please, how long can I give low dose Rivotril? My son is 11 and is very aggressive. Rispolept didn't help, now he has tics.
ReplyDeleteRispolept/Risperidone increases the amount of dopamine (by the serotonin 5-HT2A blocking effect in the presynaptic receptor) and may causes tics and other features of what is called tardive dyskinesia. This is a very common side effect. It is reported to affect 25+% within a year.
DeleteTardive dyskinesia can be difficult to make go away. Do not take Rispolept/Risperidone ever again. It can become permanent.
If you already have tics, like in Tourette syndrome, Risperidone can actually make them go away.
Low dose Rivotril is cognitive enhancing, it will not reduce aggression. At this very low dose it is non addictive and so you take it for as long as it provides the cognitive effect (i.e. for years and years).
For aggression you have to find the underlying reason, and then treat that. There are very many possible causes and very many associated therapies.
Thank you for the answer. The tics appeared during Rispolept treatment. The problem is that in my country few is known about autism and adhd. All the information parents have to struggle alone to find. Great thanks to internet and persons like you, that share information with us.
DeleteAggression has always been a problem with my son and BCAA therapy may help with respect to autism as I believe most of the aggression is due to excess dopaminergic signaling in both the dorsal striatum and ventral striatum (brain areas). The same area of the brain that dies off in Parkinson's disease supplies the dopamine to these other areas in well-regulated loops. You could have a situation via improper brain development where you have excessive dopamine sensitivity of D1 or D2 like receptors which Risperidone blocks, or else just too much dopamine via these loops called the mesolimbic dopamine loop and the nigrostriatal loop. There are three main pathways in what is called the basal ganglia of which the striatum is part of which affects motor, cognitive, and limbic (mood and reward) output and acts like a pedal and a break for behaviors and those are the direct, indirect, and hyperdirect pathways. The direct pathway is like the gas and the indirect pathway is like the brake and the hyperdirect pathway is like the emergency brake. Dopamine stimulates D1 receptors which drive the direct pathway (the gas) as well as D2 receptors which inhibit the indirect pathway (the brake). So dopamine causes you to hit the gas on the car and take off the break at the same time and too much dopaminergic signaling will cause the car to always be driving really fast with no way to stop (which can mean not being able to calm down).
DeleteSo to deal with excess dopamine, I have used BCAA therapy as well as a few other readers on this blog with some anecdotal success. You can search the forum for my posts for the exact methodology of it all if you wish. It is a cheap therapy which may help with some of the worst of the aggression if excess dopamine is the problem. Risperidone by the way goes after the D2 receptor and eventually leads to tolerance and an imbalance in the basal ganglia pathways leading to tardive dyskinesia as well as problems with D3 receptor stimulation in a part of the hypothalamus that regulates the release of prolactin which will grow breasts.
Hi Peter
ReplyDeleteclonazepam 25mcg
seems to work for son but he just don't want to sleep. But not hyper
Do you think dose is too low or high
What are the positive effects that you are seeing?
DeleteIs there any aggression or other negative behaviors?
More responsive. No increased aggressiion or negative behaviours
DeleteBut late to sleep is obvious
Yea we notice more adamant, aggressive
DeleteI suggest you lower the dose by 20%
Delete
ReplyDeleteHi Peter, I think I found a magic formula for my son Denis-Stefan, I would like to make it known to help these children with this autoimmune encephalitis. The formula is: cromolyn sodium (allergoval) 4-6 capsules a day, and surprise is enterosgel 15 -20mg 2-3 times a day (in 20 minutes after administration he started to draw and look at magazines, the agitation disappeared, he is very calm, he watches TV and he seems to understand what is being discussed, no you still need verapamil, you stay out for hours, it is a permanent improvement every day, your sleep has improved, you sleep very well, in the morning you are lazy in bed like we adults do, you are no longer alone in the room) 2.5 mg prozac in the morning , and in the evening at bedtime 10 mg bacoflen.
The allergy on the face is gone, she has a clean complexion now, 80% improvement is from this intestinal absorbent, it worked wonders for us
Hi Dragos, that is very interesting. There is a new drug (AB 2004) in the research that also targets harmful substances that are produced by gut bacteria, so the idea makes good sense.
Deletehttps://www.axialtx.com/newsfeed/nature-medicine-publishes-full-results-from-axial-therapeutics%E2%80%99-phase-1b%2F2a-clinical-trial-in-autism-spectrum-disorder-(asd)
For other readers, here is a link to the Enterosgel product.
https://enterosgel.eu/?l=en&m=co-je-to-enterosgel
Does Stefan have intestinal problems?
In the drug trial I mentioned above they target people with autism + intestinal problems + anxiety. Their therapy is supposed to cure the anxiety, but only for those with GI problems.
Are you still wanting to use Galavit? or is it no longer needed?
Enterosgel looks well worth a try for those with autism + autoimmune issues.
Hello Dragos,
DeleteI'm happy to read that you've found a working solution. May I ask if you are using the recommended doses of Enterosgel or a bit more? I want to give it a try for my 5.5 year old son. The package says for kids 1-6 years old, the recommended dose is 5 g x 3 times a day. Are you giving 15-20 g in total a day or it's just a single dose?
Thanks in advance,
Oktay
Hello, we give him 15gr twice a day, and after 2 hours Allergoval 4 capsules a day divided into 2 doses, my boy is 18 years old and 95 kg, now you can see how you dose it ....
DeletePeter, Denis has had bowel problems since he was a year old, then he had soft and frequent stools, practically everything he ate did not have time to digest, now we face constipation and food selection, but since we use allergoval (cromolyn) and enterosgel, constipation is gone. This gel is a miracle for us, I think it detoxifies aluminum from the MMR vaccine, or other toxins.I think a major problem is the damaged intestine, and the enterosgel comes and repairs.
ReplyDeleteGalavit we couldn't buy the problem anymore (Putin), but thanks to the Australian for the article, Enterosgel I think is much better than what they are trying to make now, thanks to the Russians for making it.
Hi Peter, kindly accept my gratitude and thanks. I finally see a ray of hope in this dark Dungun of autism. Your blogs have given so much that it simply cannot be expressed in words. I live in Toronto let me if I could be of any help. My son's story some other time.
ReplyDeleteRegards
Peerani
Hi Peter if I take rivotril 2.5 mg /ml according to my calculations 1ml is 25 drops so one drop will be 0.04 mg can I and is this right? Can I try this dose for him who is 14 years old and weighs 59 kg?
ReplyDeleteAccording to the producer one drop of your drug contains 0.1 mg. I think you would need 0.03 to 0.04 mg. So you would need another bottle and make a weaker solution using water. If you add one drop of clonazapam to 9 drops of water you will have 0.01mg per drop.
ReplyDeleteYou will need a syringe to measure things.
Hi Peter we had success with clonazepan it work well on my son mood and hyperactivity now i would like to try amantadine do yuo think 100 mg a day is ok this is the dose that dr o'hara use i read that yuo use 0.7 my son
ReplyDeleteHas 14 years old.
That is great news.
DeleteAmantadine blocks the effects of glutamate and so may help with hyperactivity and irritability. You normally start with a low dose of 25mg and then every 5 days increase by 25mg. You observe the effect and stop increasing the dose when the effect is see. A typical dose is 100mg and it is best to stay at that dose or a lower one.
This is another therapy that will work well for some and not benefit others. It does have clinical trials to support its use.