How to reduce stimming

Discuss autism diets and biomedical treatments of autism.

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FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Fri Dec 30, 2016 12:38 am

Nikkie111 wrote:This info is very useful!!!! Thank you!
Ok the rs2710102 is a funny one, apparently the GG is the autism allele, the AA is selective mutism or anxiety so different and it's odd cause it doesn't apply to us
Have a look here, there are many SNPs associated with autism but these are the key ones
https://www.23andme.com/you/community/thread/14291/
Admittedly the Rs1858830 is really a dodgy one! But strong antioxidants, antiinflamatory, and antibacterials/diet should sort the issue
Fwiw it can get depressing reading this but I think as long as our issue is not a brain structural thing, it ll be ok :wink:

My son has CC mutation in Rs1858830 (MET gene). I ignored it because it is present in 47% of population (http://www.jclinbioinformatics.com/content/2/1/17). But now I am reading that a combination of this mutation and air pollution (specifically polycyclic aromatic hydrocarbon) is what really increases the ASD risk. A detail description of the MET gene function and its implication in autism can be found here: https://passionlessdrone.wordpress.com/2011/02/25/autism-alphabet-soup-met-hgf-plaur-serpine/ IT IS A MUST READ! That post goes through explaining that SNP's are not really dooming and that our bodies always find a way to modify other things to compensate for low or high expressions of SNP genes.

I checked all genes relevant to my son's autism (methylation, detoxification, neurotransmitter, mental, etc). The ones that I think are important are:

rs1801131 MTHFR A1298C (G/G) - occurs in 0.01% population, leads to low BH4 and high ammonia

rs3749034 GAD1 (G/G) - occurs in in 68.6%, rs3828275 GAD1 (T/T) - occurs in 7.5%, both lead to high glutamate levels and seizures

rs6323 MAOA (T/T), rs2270641 SLC18A1 (G/G) - occurs in 13.3%, both lead to high monoamines (norepinephrine, epinephrine, dopamine, and serotonin) and psychiatric disorders, anger

They should guide me in proper selection of supplements (avoid inhibition of MAO-A and GAD, reduce glutamate and ammonia, avoid stimulants and anything that raises dopamine to prevent schizophrenia).

Nikkie111
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Re: How to reduce stimming

Postby Nikkie111 » Fri Dec 30, 2016 6:48 pm

We have the same mutation for Rs1858830 but the article you posted made me feel better :wink: ... Extremely useful !
If you find anything that stops dopamine going up do let us know we have the same issue!
I do hope you try Japanese knotweed at some point (good brand if possible) ..... :)

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Fri Dec 30, 2016 8:37 pm

Nikkie111 wrote:We have the same mutation for Rs1858830 but the article you posted made me feel better :wink: ... Extremely useful !
If you find anything that stops dopamine going up do let us know we have the same issue!
I do hope you try Japanese knotweed at some point (good brand if possible) ..... :)

I was excited by Japanese Knotweed and already bought it online, but then I read that Resveratrol inhibits MAO-A, which is mutated in my son. Does your son have warrior gene too? I am planning to try Butenamide next. The more I read about it, the more I feel that it fits my son (reduces ammonia, balances neurotransmitters, increases cognition)

Nikkie111
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Re: How to reduce stimming

Postby Nikkie111 » Sat Dec 31, 2016 6:47 am

FatherOf2 wrote:
Nikkie111 wrote:We have the same mutation for Rs1858830 but the article you posted made me feel better :wink: ... Extremely useful !
If you find anything that stops dopamine going up do let us know we have the same issue!
I do hope you try Japanese knotweed at some point (good brand if possible) ..... :)

I was excited by Japanese Knotweed and already bought it online, but then I read that Resveratrol inhibits MAO-A, which is mutated in my son. Does your son have warrior gene too? I am planning to try Butenamide next. The more I read about it, the more I feel that it fits my son (reduces ammonia, balances neurotransmitters, increases cognition)

Didn't we say to be careful of how much consideration we give to the genes as they work with others in parallel etc :)
How do you know he's not angry because he's too inflamed, because he has a certain bacteria in a specific location in gut, because of too much toxins/oxidative stress, thin brain cortex etc ? you could really miss on some key antioxidants here that could bring some of the inflamation down! And I'm saying could as I don't know either, it's all a gamble but sometimes it does pay off
Me personally I would try it (which brand did you get), I'd give it a chance and if he gets more angry id stop it - I'd observe for any signs of progress though even within his anger. My 4yo boy is doing great, just learning to spell now as well (only 3 letter words though 8) ) and just 3 weeks ago I'd ask him what letter does a certain word start with and he just wouldn't get it... but not gonna lie he's very yeasty to the point that I just had to give fluconazole!! But yes the progress is there and it's quite obvious! But it's extremely important you identify and treat yeast as it can hide the real progress...

As for the drug you mentioned it sounds good but it says it's dieuretic, won't this make him have toilet accidents in the night?

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sat Dec 31, 2016 11:54 am

You are right about advising not to pay attention to genetics too much. I ordered this one https://www.seekinghealth.com/resveratrol-plus-60-capsules What is a reputable brand for Japanese Knotweed? Do they have third party Certificate of Analysis? I am very careful about herbs because plants accumulate environmental toxins like lead and mercury.

About diuretics. As you may know from my posts, I have two sons, they are twin brothers. The autistic one, who I am talking here most of the time, doesn't sweat, and sweating is an important detox mechanism. I suspect that poor blood circulation in his brain is the problem, but it is a long story. His neurotypical twin brother sweats, and the sweat smells like ammonia. In fact, his teacher once complained that we should do something about his ammonia smell. So, I think encouraging natural detox mechanism like sweating is important. At one point I bought Dandelion Root extract, which is diuretic, but never gave it to my son. Now reading all this scientific research and clinical trials about Bumetanide made me think that I should try a diuretic. I would rather deal with peeing accidents if his mental fog from ammonia lifts.

Nikkie111
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Re: How to reduce stimming

Postby Nikkie111 » Sat Dec 31, 2016 6:42 pm

FatherOf2 wrote:You are right about advising not to pay attention to genetics too much. I ordered this one https://www.seekinghealth.com/resveratrol-plus-60-capsules What is a reputable brand for Japanese Knotweed? Do they have third party Certificate of Analysis? I am very careful about herbs because plants accumulate environmental toxins like lead and mercury.

About diuretics. As you may know from my posts, I have two sons, they are twin brothers. The autistic one, who I am talking here most of the time, doesn't sweat, and sweating is an important detox mechanism. I suspect that poor blood circulation in his brain is the problem, but it is a long story. His neurotypical twin brother sweats, and the sweat smells like ammonia. In fact, his teacher once complained that we should do something about his ammonia smell. So, I think encouraging natural detox mechanism like sweating is important. At one point I bought Dandelion Root extract, which is diuretic, but never gave it to my son. Now reading all this scientific research and clinical trials about Bumetanide made me think that I should try a diuretic. I would rather deal with peeing accidents if his mental fog from ammonia lifts.


Buhner uses Green Dragon Botanicals or Source Naturals but the brand you got is good too. You do have a point abou plant toxicity but a) mostly it's accumulated at the leaves and CdB confirmed today that it's the roots we are using mostly as per Buhner (I called up my supplier and he said he uses roots as well on most cases) and b) Mercury/metals are not everywhere- a reputable brand will grow the plants in healthy,green,pure organic fields and not close to mines. Also it won't use plants that look unhealthy and plant toxicity looks unhealthy ... hence brand is extremely important

Wrt to the dieuretic drug I hear what you saying and I get you. If he's not sweating at all id probably go down the herbs roots as there are loads that cause this effect(ginger which I've used loads of times, cayenne pepper etc ) or rent an infrared sauna to have it at home and use it once a week. I personally wouldn't go down the drugs root straight away but I'm quite scared of too many drugs antibiotics etc so maybe you shouldn't follow my example ... 8)

Why didn't you use the dandelion root? Great for liver!! If you do use them though please remember to give them away from drugs:-)

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Mon Jan 02, 2017 12:11 am

Nikkie111 wrote:Why didn't you use the dandelion root? Great for liver!! If you do use them though please remember to give them away from drugs:-)

Andy Cutler, the chelation propagandist, poo pooed dandelion by claiming that it is toxic on liver (http://onibasu.com/archives/am/1086.html).
Here are his exact words:

AC: The harmful stuff to watch out for is beet green, dandelion, lemon
rind, etc.

Q: Why?

AC: It irritates the liver by being slightly toxic and that increases bile flow.
Toxic livers often can't handle a bit more toxic stress - these liver flushes
make a lot of mercury poisoned people really sick. Others tolerate them,
but you can get the same effect without the risk by using milk thistle,
taurine and glycine.


Analysis - paralysis :)

Nikkie111
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Re: How to reduce stimming

Postby Nikkie111 » Mon Jan 02, 2017 4:39 pm

FatherOf2 wrote:
Nikkie111 wrote:Why didn't you use the dandelion root? Great for liver!! If you do use them though please remember to give them away from drugs:-)

Andy Cutler, the chelation propagandist, poo pooed dandelion by claiming that it is toxic on liver (http://onibasu.com/archives/am/1086.html).
Here are his exact words:

AC: The harmful stuff to watch out for is beet green, dandelion, lemon
rind, etc.

Q: Why?

AC: It irritates the liver by being slightly toxic and that increases bile flow.
Toxic livers often can't handle a bit more toxic stress - these liver flushes
make a lot of mercury poisoned people really sick. Others tolerate them,
but you can get the same effect without the risk by using milk thistle,
taurine and glycine.


Analysis - paralysis :)


Good one never heard of this... Have to say though.... AC::: not my cup of tea 8)

Thanks for the info on this thread Fo2 very useful ...

Pink
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Re: How to reduce stimming

Postby Pink » Fri Jan 06, 2017 5:10 pm

First of all, I think you should take your son to get a medical exam to eliminate the possibility of physical causes for stims, such as ear infections, chronic pain, migraines and retinal detachment. Then, vigorous exercise can help to reduce the need to stim, probably because exercise is associated with beta-endorphins just like stimming. And as I read, you need to try interacting with him more when stimming occurs. According to the book Communicating Partners, individuals with autism tend to perceive the world through sensation and action, while most neurotypicals perceive through thought and language. MacDonald, the author of this book, also recommends turn-taking activities to engage a child without trying to stop stimming during the activity; the activity will gradually become increasingly comfortable and attractive, naturally reducing the stim. Besides, it's imporatant to create a positive association between stimming and relationship-building.

makingitpossible
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Re: How to reduce stimming

Postby makingitpossible » Fri Jan 20, 2017 9:09 am

FatherOf2 wrote:You are right about advising not to pay attention to genetics too much. I ordered this one https://www.seekinghealth.com/resveratrol-plus-60-capsules What is a reputable brand for Japanese Knotweed? Do they have third party Certificate of Analysis? I am very careful about herbs because plants accumulate environmental toxins like lead and mercury.

About diuretics. As you may know from my posts, I have two sons, they are twin brothers. The autistic one, who I am talking here most of the time, doesn't sweat, and sweating is an important detox mechanism. I suspect that poor blood circulation in his brain is the problem, but it is a long story. His neurotypical twin brother sweats, and the sweat smells like ammonia. In fact, his teacher once complained that we should do something about his ammonia smell. So, I think encouraging natural detox mechanism like sweating is important. At one point I bought Dandelion Root extract, which is diuretic, but never gave it to my son. Now reading all this scientific research and clinical trials about Bumetanide made me think that I should try a diuretic. I would rather deal with peeing accidents if his mental fog from ammonia lifts.


Fatherof2
In case you decide to go with dandelion I thought I would mention that the dandelion root is more for bile flow and liver support. The dandelion leaf is more for the kidneys and diuretic action. I have been using the root and just recently found this out so now I am going to do both. I wouldn't put much stock on what Andy Cutler says. Dandelion is one of the herbs they even recommend for cancer and is safe during pregnancy.

nonov
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Re: How to reduce stimming

Postby nonov » Fri Jan 20, 2017 8:14 pm

Just thought I would chime in about butenamide, as I trialed it last summer with some success. My son is severely apraxic and also has serious SPD but doesn't exhibit classic autism in regards to social interaction, cognitive ability, or non verbal communication. So these results may not apply to a kiddo with true autism. That being said, I think it really helped regulate his GABA/Glutamate, big time. His sleep cycle had been terrible since he was a baby and within two days he was MUCH calmer and started taking naps in the daytime in addition to 8 hours at night (he was just turned 3 att) I could definitely see a switch over occur. HOWEVER, after a few months I had to take him off of it because of the intense diuretic effects. At first it was just a few extra wet diapers but after 4 months on it (1 mg a day, less had no effect) he was starting to have symptoms of liver distress and was always extremely thirsty. I also supplemented potassium but it seemed that the drug almost became too strong for him and the calming effects had not changed for good or bad. I didn't notice any effect on stimming, as he exhibits that more with seasonal allergies, food allergies, yeast or SIBO, etc.
And for us, quercetin works great for stimming. We tried it after NAC caused a big yeast breakout. Never had any luck with NAC, we gave PharmaNAC a try but it was a waste of money and it stunk. Quercetin works for all of us though, it tastes citrusy, mixes well into liquids, though I am cautious with his dose as it can exacerbate yeast like NAC, but the effects for my son are worth the risk. There are MANY purported benefits to quercetin. So far it's been a winner and I can't really say that about many other supps. Heavy duty probiotics, GFCF, and lots of therapy are our only other big guns in this fight.

I would recommend trialing butenamide with the same old adage of caution as I'm sure you are familiar with. EpiphanyASD definitely recommends it and has seen long term benefit in his son who has classic autism. I got all my info from his blog.

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sat Jan 21, 2017 2:07 pm

nonov wrote:Just thought I would chime in about butenamide, as I trialed it last summer with some success. My son is severely apraxic and also has serious SPD but doesn't exhibit classic autism in regards to social interaction, cognitive ability, or non verbal communication. So these results may not apply to a kiddo with true autism. That being said, I think it really helped regulate his GABA/Glutamate, big time. His sleep cycle had been terrible since he was a baby and within two days he was MUCH calmer and started taking naps in the daytime in addition to 8 hours at night (he was just turned 3 att) I could definitely see a switch over occur. HOWEVER, after a few months I had to take him off of it because of the intense diuretic effects. At first it was just a few extra wet diapers but after 4 months on it (1 mg a day, less had no effect) he was starting to have symptoms of liver distress and was always extremely thirsty. I also supplemented potassium but it seemed that the drug almost became too strong for him and the calming effects had not changed for good or bad. I didn't notice any effect on stimming, as he exhibits that more with seasonal allergies, food allergies, yeast or SIBO, etc.
And for us, quercetin works great for stimming. We tried it after NAC caused a big yeast breakout. Never had any luck with NAC, we gave PharmaNAC a try but it was a waste of money and it stunk. Quercetin works for all of us though, it tastes citrusy, mixes well into liquids, though I am cautious with his dose as it can exacerbate yeast like NAC, but the effects for my son are worth the risk. There are MANY purported benefits to quercetin. So far it's been a winner and I can't really say that about many other supps. Heavy duty probiotics, GFCF, and lots of therapy are our only other big guns in this fight.

I would recommend trialing butenamide with the same old adage of caution as I'm sure you are familiar with. EpiphanyASD definitely recommends it and has seen long term benefit in his son who has classic autism. I got all my info from his blog.

Thanks, nonov. Your experience is very valuable to me. I got a prescription for Butenamide, but not hurrying to start it yet because so far my son is improving every week since we reached our target dose of Lamictal. Thank you for suggesting Quercetin for stimming. It is a great suggestion! I just found several articles mentioning that it reduces glutamate release, which is probably the reason for reducing stims. It is interesting that Luteolin also blocks the glutamate release through the same action as quercetin (https://www.ncbi.nlm.nih.gov/pubmed/21721589). And luteolin helped my son 3 years ago when we tried it in parallel with Namenda, which I thought was responsible for stopping the stims. Perhaps it was Luteolin, or may be both. Before I start Bumetanine, I am going to try Luteolin again.

nonov
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Re: How to reduce stimming

Postby nonov » Fri Jan 27, 2017 11:06 pm

Glad I could help and thanks for your suggestion, Fatherof2 :) I actually just bought some neuroprotek lo phenol, thought we'd give it a try. He does great on quercetin but I'm so scared of yeast-it's such a boogeyman for us! I've heard mixed reviews though. Do you have a brand of luteolin you prefer? Stimming is always an issue with my son. We're thinking of going for AC chelation pretty soon. My son actually was never vaxxed (despite many a brow beating from pediatricians, etc) but had 3 surgeries in his first year and was hospitalized...antibiotics, IV fluids, narcotics, sedation, you name it, he got it. I'm pretty sure that AC chelation will do us some good. NAC sounded great on paper but triggered gut issues though it's done some good things for me with my nail biting ...really wanted it to work for my little guy with his hand and vocal stimming (often hard to differentiate with his apraxia, but it can be a problem). Perhaps once we do some chelating NAC may work again. Just glad that quercetin does have an effect...it's been my only real "calming" agent for the sensory overloads, allergy outbursts, etc. Magical stuff.

jaumeb
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Re: How to reduce stimming

Postby jaumeb » Sat Jan 28, 2017 6:13 am

Thanks nonov for your report on quercetin.

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sat Jan 28, 2017 12:37 pm

nonov wrote:Glad I could help and thanks for your suggestion, Fatherof2 :) I actually just bought some neuroprotek lo phenol, thought we'd give it a try. He does great on quercetin but I'm so scared of yeast-it's such a boogeyman for us! I've heard mixed reviews though. Do you have a brand of luteolin you prefer? Stimming is always an issue with my son. We're thinking of going for AC chelation pretty soon. My son actually was never vaxxed (despite many a brow beating from pediatricians, etc) but had 3 surgeries in his first year and was hospitalized...antibiotics, IV fluids, narcotics, sedation, you name it, he got it. I'm pretty sure that AC chelation will do us some good. NAC sounded great on paper but triggered gut issues though it's done some good things for me with my nail biting ...really wanted it to work for my little guy with his hand and vocal stimming (often hard to differentiate with his apraxia, but it can be a problem). Perhaps once we do some chelating NAC may work again. Just glad that quercetin does have an effect...it's been my only real "calming" agent for the sensory overloads, allergy outbursts, etc. Magical stuff.

We used LutiMax brand of luteolin. Neuroprotek never worked. We tried LutiMax again this week for just two days, and the school reported behaviors like refusal to work. At the same time we gave Magnesium Taurate. Those days he had liquid stool, which stopped after stopping LutiMax and Mg Taurate. The liquid stool was probably caused by Ng Taurate. So, we will be trying LutiMax again alone. I am also going to buy quercetin and try that. For us, anything that leads to behaviors is pretty much a 'no'. That is why we stopped AC chelation. I hope your trial of it will go smoothly. Just keep the dose low (no higher than 5mg of DMSA) and supplement with minerals.

Also, to report another observation. We have been giving our son phosphatidyl serine for more than 6 months. We stopped it a few weeks ago and I thought I noticed a reduction in stimming. This Friday, I gave him phosphatidylserine again and my wife said that she saw a definite increase in his stimming. So, we are stopping phosphatidyl serine for good.

Ivia
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Re: How to reduce stimming

Postby Ivia » Sat Jan 28, 2017 2:31 pm

Phosphatidylserine increases dopamine... Unfortunately, quercetin too. These supplements can be problematic for people with COMT gene mutations...

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sun Jan 29, 2017 1:13 am

Ivia wrote:Phosphatidylserine increases dopamine... Unfortunately, quercetin too. These supplements can be problematic for people with COMT gene mutations...

Thank you for warning about PS and quercetin. I didn't know that they increase dopamine. I found that PS not only increases Dopamine, but it also increases testosterone to cortisol ratio, which can cause behaviors. I also found that some other commonly used supplements increase dopamine:
B6 (co-factor in dopamine synthesis, always caused irritability in my son)
L-Theanine (caused huge mood swings in my son)
Circumin (caused irritability)
Gingko Biloba (never tried)
SAM-E (never tried)
Bacopa (wanted to try due to anti-seizure properties)

Dopamine is a controversial neurotransmitter. There are two types of dopamine receptors: D1 and D2. In schizophrenia, these receptors are imbalanced: D1 activity is low, which produces the feeling of apathy, social withdrawal and loss of motivation, whereas D2 activity is high, which causes the hallucinations. Fish oil, but only in very large quantities, tips the balance between these two activities in the right direction. Uridine also modulates this balance in the right way. You can take it orally as UMP or as Citicoline, which is converted to Uridine. It appears that the stack fish oil + uridine + citicoline (optional) is popular among people suffering from the dopamine imbalance. Has anyone tried Uridine?

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Mon Jan 30, 2017 10:38 am

Another update: we tried MCT oil (actually XCT Oil from Bulletproof) on this weekend and it caused a lot of stimming and self-injurious behaviors (hitting his head) in my son. His ABA therapist said she never saw my son worse than that day. MCT oil gives ketone fuel to the brain. I think my son doesn't need extra fuel. All my new trials of different things (Creatine, LutiMax, XCT oil) have increased stimming, irritability and SIB. Next is Molybdenum as a co-factor in breaking sulfates. I still want to see what Quercetin does even though it increases dopamine. I am expecting its effect to be similar to Luteolin (higher irritability).

Nikkie111
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Re: How to reduce stimming

Postby Nikkie111 » Mon Jan 30, 2017 5:10 pm

FatherOf2 wrote:Another update: we tried MCT oil (actually XCT Oil from Bulletproof) on this weekend and it caused a lot of stimming and self-injurious behaviors (hitting his head) in my son. His ABA therapist said she never saw my son worse than that day. MCT oil gives ketone fuel to the brain. I think my son doesn't need extra fuel. All my new trials of different things (Creatine, LutiMax, XCT oil) have increased stimming, irritability and SIB. Next is Molybdenum as a co-factor in breaking sulfates. I still want to see what Quercetin does even though it increases dopamine. I am expecting its effect to be similar to Luteolin (higher irritability).

Oh dear me Fo2 sorry to hear that! Is he any better now?
Just pls bear in mind luteolin, and Mct are high salycilates so could be that? Is his diet low phenol anyway?
You migh need to look into viruses Fo2- not sure what you've done so far on this but you might need to bring the load down - the brain inflammation they cause is just mad!
Hope your little one picks up soon !

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Tue Jan 31, 2017 1:59 am

Nikkie111 wrote:Oh dear me Fo2 sorry to hear that! Is he any better now?
Just pls bear in mind luteolin, and Mct are high salycilates so could be that? Is his diet low phenol anyway?
You migh need to look into viruses Fo2- not sure what you've done so far on this but you might need to bring the load down - the brain inflammation they cause is just mad!
Hope your little one picks up soon !

Thanks, Nikkie. I tend to get used to improvements and start experimenting with new stuff just to understand how lucky I was to have what I had before the experimentation. We returned to our core supp,emts, and he is getting better. I should have introduced XCT oil slowly instead of going straight to one tablespoon. XCT oil turned out to be quite a powerful stuff. We saw irritability from MCT oil in the past, but it would take 1-2 weeks to get it to the unbareable level. XCT oil gave it in one day.

We have tested blood for viruses and it was negative. We could assume that he has some viruses and start him on Valtrex or Famciclovir. I took Valtrex in the past and then switched to Famciclovir for my cold sores. Every time I take either one, they cause a headache. That proves to me that they are pro-inflammatory, but all studies I saw claim that they are not. Then what is the cause of the headaches? These drugs don't even kill viruses. They just stop them from multiplying. So, in a dormant (non-multiplying) viral infection, they are pretty useless. IMO. Then there are herbal alternatives and immune boosters like Echinacea, Goldenseal, Cats Claw, Ginseng, etc. I tried Goldenseal and saw improvements in my son every time I gave it to him. But you can't take it for more than 10 days. Goldenseal is not really an immune booster, but rather a weak antifungal (thanks to Berberine) and anti-inflammatory. That's why I felt comfortable giving it to my son. I am still scared of Echinacea, Cats Claw and Ginseng, and anything that boosts or weakens immune system. I need to study them more to feel comfortable.


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