How to reduce stimming

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FatherOf2
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How to reduce stimming

Postby FatherOf2 » Wed Dec 21, 2016 12:29 pm

My son likes to pinch his fingers in front of his eyes when he gets excited, which is pretty much every time he draws pictures or plays on iPad or sees a passing truck. In the past, he stimmed with his voice, repeating lines from his favorite cartoons. The only time we saw these stimmings to stop is when we gave him Namenda 3 years ago. Namenda made him more social, talk more appropriately, notice his brother, etc. But, the response was transient: it happened with each dose increase followed by a regression. At high dose (15mg/day), he became irritable and we gradually took him off Namenda, which restored his mood, but also his stimming. Namenda is a drug for Alzheimer's, it binds to NMDA receptors, blocking glutamate activity (just like magnesium). I thought that Lamictal, an anti-seizure med which blocks the release of glutamate, will have a similar effect to Namenda. It did, it made my son more social, use more language appropriately, etc. But stimming has remained or even got worse. We could try adding Namenda to Lamictal, which is commonly done in patients with depression, but I am afraid we will see reduced stimming only while raising the Namenda dose.

What other things reduce stimming? I searched through this and other websites and found the following suggestions:
- B1 as Benfotiamine at 150mg/day (JeniB). We are giving B complex with B1 at 60mg and so far nothing. Perhaps I need to give specifically Benfotiamine.
- Cod liver oil. It is supposed to reduce brain inflammation, which results in high levels of glutamate. We used it in the past. Nothing. In fact, any anti-inflammatory supplements should help to reduce glutamate and stimming, such as NAG or Circumin. We never tried NAG, but Circumin caused huge irritability.
- Spironolactone (Kastania) also reduces brain inflammation. We never tried it.
- L-Theanine or Taurine to boost GABA and thus reduce glutamate. We are giving Taurine at night because of its seizure-reducing properties. It helps my son sleep well. We never really tried L-Theanine for a long time, bit it is an interesting supplement which restores alpha cycle in the brain (feeling of tranquility).
- NAC is an oxidant that increases glutathione levels. Animal studies showed that NAC reduces glutamate in the brain. In some cases adding glycine to NAC helps. Perhaps NAC will be our next thing to try but have to watch for yeast and behaviors because my son doesn't tolerate sulfur-based supplements or drugs. 4Bryce said that he used Namenda + NAC in his son and saw great improvements.

AspieGenes
Posts: 114
Joined: Wed Sep 28, 2016 12:32 pm

Re: How to reduce stimming

Postby AspieGenes » Wed Dec 21, 2016 3:12 pm

If you understand why Namenda stopped working you will get closer to the issue.

Since it blocks the glutamate receptor, in the continued presence of glutamate the body will just make more NMDA receptors. So blocking the receptors will always fail. And stopping the medication will make symptoms worse than when you started until the NMDA receptors "die off".

Again I will point out that sulfites will inhibit glutamate dehydrogenase and cause a build of of glutamate. The fact that your sone does not do well on sulfur aminos is proof of that something is wrong with either his SUOX genetics or his molybdenum cofactor genes (MOCS1, MOCS2, GPHN).

http://www.jbc.org/content/279/41/43035.short

And if curcumin (an MAO inhibitor) causes issues I think he might already have too many catecholamine bouncing around.

https://www.ncbi.nlm.nih.gov/pubmed/18766332

Lowering glutamate will lower the release of catecholamines. Riboflavin might help stimulate MAO to get rid of the neurotransmitters.

Nikkie111
Posts: 321
Joined: Thu Sep 24, 2015 6:26 am

Re: How to reduce stimming

Postby Nikkie111 » Wed Dec 21, 2016 5:38 pm

Fo2 our stimming disappeared out of nowhere, hubby and I were trying to figure out what we did exactly that stopped it as we did so many stuff simultaneously (my boy was spinning anything he could get his hands on and on top of that he was doing funny things with his eyes)
I assume it was the introduction of B1 but it wasn't the one you mentioned it was this one http://www.metabolics.com/vitamin-b1-th ... 100ml.html which doesn't have to be converted- same form as JeniB's but different brand although I did use the one that Jeni mentioned as well at the same time... Prob worth trying .....

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: How to reduce stimming

Postby FatherOf2 » Wed Dec 21, 2016 9:14 pm

AspieGenes wrote:Since it blocks the glutamate receptor, in the continued presence of glutamate the body will just make more NMDA receptors. So blocking the receptors will always fail.

I agree.

AspieGenes wrote:Again I will point out that sulfites will inhibit glutamate dehydrogenase and cause a build of of glutamate. The fact that your sone does not do well on sulfur aminos is proof of that something is wrong with either his SUOX genetics or his molybdenum cofactor genes (MOCS1, MOCS2, GPHN).

I had similar thoughts about messed up sulfur processing genes.

AspieGenes wrote:Riboflavin might help stimulate MAO to get rid of the neurotransmitters.

How much of Riboflavin is really needed for a 7yo boy? Currently, my son takes 75mg as part of Doctor's Best Fully-Active B-complex.

You posted several times about glutamate, but how do we reduce glutamate? Lamictal seems to be working - it controls seizures by reducing glutamate release, and, as a side effect, it reduces depression and anxiety, which is why this med is so powerful. But it doesn't do anything for stimming, at least in my son. My thoughts were that I need to add something that either converts glutamate to glutathione (need cysteine, e.g. NAC) or to GABA (Taurine - stimulates GABA receptors, Theanine - increases GABA production, B6 - cofactor). B6 always resulted in higher irritability in my son, so did zinc. Taurine was great and helped with sleep. Theanine at one point caused huge mood swings, from laughing to crying. We never tried NAC. What else can reduce glutamate and stimming?

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: How to reduce stimming

Postby FatherOf2 » Wed Dec 21, 2016 9:25 pm

Nikkie111 wrote:Fo2 our stimming disappeared out of nowhere, hubby and I were trying to figure out what we did exactly that stopped it as we did so many stuff simultaneously (my boy was spinning anything he could get his hands on and on top of that he was doing funny things with his eyes)
I assume it was the introduction of B1 but it wasn't the one you mentioned it was this one http://www.metabolics.com/vitamin-b1-th ... 100ml.html which doesn't have to be converted- same form as JeniB's but different brand although I did use the one that Jeni mentioned as well at the same time... Prob worth trying .....

Thanks, Nikkie. We will try Benfotiamine. Is it possible to list things that you tried that might have resulted in elimination of stimming. I would like to cross-correlate with what we did 3 years ago that resulted in temporary elimination of stimming (just for 1 month). Back then we did the following new things (I wish we did one at a time):
- Namenda (I think it is the one)
- MB12 injections from Hopewell pharmacy. We tried MB12 from other pharmacies and never saw any effects. But this was the first time we tried Hopewell pharmacy, which somebody claimed is the only pjarmacy that prepares MB12 "the right way", whatever that means.
- Lutimax
- Increased iron from 15mg/day to 60mg/day (my son is deficient)

AspieGenes
Posts: 114
Joined: Wed Sep 28, 2016 12:32 pm

Re: How to reduce stimming

Postby AspieGenes » Wed Dec 21, 2016 9:43 pm

FatherOf2 wrote:You posted several times about glutamate, but how do we reduce glutamate? Lamictal seems to be working - it controls seizures by reducing glutamate release, and, as a side effect, it reduces depression and anxiety, which is why this med is so powerful. But it doesn't do anything for stimming, at least in my son. My thoughts were that I need to add something that either converts glutamate to glutathione (need cysteine, e.g. NAC) or to GABA (Taurine - stimulates GABA receptors, Theanine - increases GABA production, B6 - cofactor). B6 always resulted in higher irritability in my son, so did zinc. Taurine was great and helped with sleep. Theanine at one point caused huge mood swings, from laughing to crying. We never tried NAC. What else can reduce glutamate and stimming?


Endogenous glutamate will depend on the childs genetics. If you have his genetics I can take a look at them and look at the Molybdenum genes. I have a program that extracts the SNPs. But there could be other places it might come from. I would say to try molybdenum but not without seeing the genetics. Taking molybdenum will lower sulfite and let glutamate dehydrogenase lower glutamate.

The trouble with ribofalvin is that to turn into the cofactors it need to go through RFK and FLAD1, both of which use magnesium as a cofactor. So how much depends on how much he needs, his level of magneisum, and how much he absorbs. So it is hard to say, but you could try to get a riboflavin test from a doctor called "erythrocyte Riboflavin".
http://clinchem.aaccjnls.org/content/51/11/2162

B6 and zinc will both raise catecholamines. Have you tried a low protein diet? That will lower all the aminos and lower catecholamine production which helps me.

The lamictal is a sodium channel blocker and not all glutamate release is triggered by glutamate. It also stops serotinin release and the stimming might come from dopamine or norepinepherine? http://autismgadfly.blogspot.com/2009/0 ... utism.html

I am wondering if klonopin would help with the stimming?

I do not know why you would give theanine since it turns into glutamate which would explain the mood swings.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: How to reduce stimming

Postby FatherOf2 » Thu Dec 22, 2016 2:06 am

AspieGenes wrote:If you have his genetics I can take a look at them and look at the Molybdenum genes. I have a program that extracts the SNPs. But there could be other places it might come from. I would say to try molybdenum but not without seeing the genetics. Taking molybdenum will lower sulfite and let glutamate dehydrogenase lower glutamate.
...
I am wondering if klonopin would help with the stimming?

I have a whole exome sequencing data for my son, but it is in FASTQ TXT format 20GB raw, 5GB archived. I also have 23&me results, which I can search online if I know a gene name. But it is hard for me to understand these results. For instance, what does this mean?

Genes Marker (SNP) Genomic Position Variants Your Genotype
IQSEC3 rs11063263 191619 A or G G / G

Why Klonopin? It is a benzodiazepine, heavy duty stuff that would make you sleepy. I tried this class of drugs (Ativan) on myself when I had panic attacks. It knocked me out pretty fast. I prefer non-sedating drugs. I didn't know that Theanine increases glutamate. Then it is off my list.

Here is my list of anti-glutamate drugs/supplements:
- Magnesium, a weak blocker of NMDA receptors
- Namenda, a non-competitive NMDA antagonist (as you pointed, the brain counteracts by creating more NMDA receptors)
- Dextromethorphan, stuff in cough medicine, also a non-competitive NMDA antagonist.
- D-Cycloserine, partial agonist of NMDA receptors, acting as an antagonist in large doses
- Lamictal, most sources state that it modulates glutamate release
- Riluzole, very similar to Lamictal
- NAC, helps converting glutamate to glutathione

Anything I missed?

Nikkie111
Posts: 321
Joined: Thu Sep 24, 2015 6:26 am

Re: How to reduce stimming

Postby Nikkie111 » Thu Dec 22, 2016 5:38 am

FatherOf2 wrote:
Nikkie111 wrote:Fo2 our stimming disappeared out of nowhere, hubby and I were trying to figure out what we did exactly that stopped it as we did so many stuff simultaneously (my boy was spinning anything he could get his hands on and on top of that he was doing funny things with his eyes)
I assume it was the introduction of B1 but it wasn't the one you mentioned it was this one http://www.metabolics.com/vitamin-b1-th ... 100ml.html which doesn't have to be converted- same form as JeniB's but different brand although I did use the one that Jeni mentioned as well at the same time... Prob worth trying .....

Thanks, Nikkie. We will try Benfotiamine. Is it possible to list things that you tried that might have resulted in elimination of stimming. I would like to cross-correlate with what we did 3 years ago that resulted in temporary elimination of stimming (just for 1 month). Back then we did the following new things (I wish we did one at a time):
- Namenda (I think it is the one)
- MB12 injections from Hopewell pharmacy. We tried MB12 from other pharmacies and never saw any effects. But this was the first time we tried Hopewell pharmacy, which somebody claimed is the only pjarmacy that prepares MB12 "the right way", whatever that means.
- Lutimax
- Increased iron from 15mg/day to 60mg/day (my son is deficient)


sure, here is what I think helped:
- virastop+OLE + monolaurin (my boy kept on getting croup constantly to a level of hospitalisation+steroids for him to be able to breath and only when I did these antivirals he never got it again)
- IMD microsilica - I suspect it's strong binder and takes some metals out of the gut
- 5 rounds of DMSA but I know you're not a fan
- GAPS diet with kefir - but stopped all dairy recently due to glutamate concerns
- molybdenum
- quite a lot of B1 but not Benfotiamine!
- celery juicing just to keep liver happy

what I added recently and saw even more progress especially playing with others, speech and academically (he's 4 but has started reading pretty well!)
- Symprove probiotic - it's liquid and goes all the way down to the gut BUT it's very expensive! We tried hundreds of probiotics and nothing ever helped
- MB12 shots from coastal pharmacy + methyl folate+ some Bs
- just started valtrex a week ago
- Buhner's herbal protocols for his gut infection - BUT I am new to this so I 'd hate to recommend something that I don't have much experience on. These are very strong herbs! We started Japanese knotweed few days ago which is for overall inflammation incl brain, ad my boy came up with some fantastic stuff, so I am extremely positive for this one already..... Herbs include the ones for antibacterial action and more on immune support, to increase the white blood cells and especially CD 57 which is a good marker for immune
- lubrokinase to break the biofilm just before the antibacterial herbs
- just a bit of no fenol with all the herbs as they are very high phenol
- diflucun when we are killing stuff and yeast is all over the place

Just a little note, as I see you're giving proper drugs, not sure if you give anything herbal for yeast etc, but don't give it too close to drugs as they can be P450 inhibitors which means more or less of that drug can stay in your boy's system (diflucun does the same). Personally I do all herbs many hours away from any drugs
Also maybe give tiny bit of no fenol with your Lutimax as it's high in salicylates I think (is the diet low phenol?).

FWIW you can lower glutamate with taurine and NAC, or try not to give high glutamate foods. Start eliminating they key artificial ones and the fermented ones and stuff like milk and yogurt

AspieGenes
Posts: 114
Joined: Wed Sep 28, 2016 12:32 pm

Re: How to reduce stimming

Postby AspieGenes » Thu Dec 22, 2016 10:58 am

FatherOf2 wrote:
AspieGenes wrote:If you have his genetics I can take a look at them and look at the Molybdenum genes. I have a program that extracts the SNPs. But there could be other places it might come from. I would say to try molybdenum but not without seeing the genetics. Taking molybdenum will lower sulfite and let glutamate dehydrogenase lower glutamate.
...
I am wondering if klonopin would help with the stimming?

I have a whole exome sequencing data for my son, but it is in FASTQ TXT format 20GB raw, 5GB archived. I also have 23&me results, which I can search online if I know a gene name. But it is hard for me to understand these results. For instance, what does this mean?

Genes Marker (SNP) Genomic Position Variants Your Genotype
IQSEC3 rs11063263 191619 A or G G / G

Why Klonopin? It is a benzodiazepine, heavy duty stuff that would make you sleepy. I tried this class of drugs (Ativan) on myself when I had panic attacks. It knocked me out pretty fast. I prefer non-sedating drugs. I didn't know that Theanine increases glutamate. Then it is off my list.

Here is my list of anti-glutamate drugs/supplements:
- Magnesium, a weak blocker of NMDA receptors
- Namenda, a non-competitive NMDA antagonist (as you pointed, the brain counteracts by creating more NMDA receptors)
- Dextromethorphan, stuff in cough medicine, also a non-competitive NMDA antagonist.
- D-Cycloserine, partial agonist of NMDA receptors, acting as an antagonist in large doses
- Lamictal, most sources state that it modulates glutamate release
- Riluzole, very similar to Lamictal
- NAC, helps converting glutamate to glutathione

Anything I missed?


Ativan is much different tan Klonopin in its mechism of action. Klonopin affects glutamate decarboxylase activity while Ativan does not. And Ativan is much stronger, in my experience. When I have a panic attack and I take Klonpin it only brings me back to normal. Ativan would knock me out. If I am not having a panic attack and I take Klonopin I usually fall asleep. To me the effect of klonopin is much more related to the amount of glutamate I have surging in my body.

On your list, I would avoid NAC, Dextromethorphan, and the Cycloserine.

On the genetics.

I spend the last 10 years understanding genetic stuff and it was a full time jobs and I was living in a university health sciences library most of the time so I get it. i am afraid people were thinking this genetics stuff was going to lead to some easy results. The results cam be found but it takes a lot of knowledge and work.

You can send them to me if you want and I can tell you what I see for what it is worth. i have several other peoples genetics with four others who have autism.

On the meaning of 23andme...

Genes Marker (SNP) Genomic Position Variants Your Genotype
IQSEC3 rs11063263 191619 A or G G / G

The gene (enzyme) name is IQSEC3. Genes are made up of SNPs. So IQSEC3 might have 10 SNPs lets say, and rs11063263 is one of them. SNPs are made up of two nucleotides (alleles or variants), like AA or CT, ect. Every SNP will have a common allele that is present in a large amount of the population, and a lesser occurring allele (minor allele) that occurs less frequently. Changes in these alleles in a SNP (most times) change the function of the enzyme. This is what leads to diversity of gene expression.

So above we see that for the SNP rs11063263 in gene IQSEC3 it can have alleles of either A or G. Your have two G alleles.

So you can first look up the function of the gene at http://www.uniprot.org/

http://www.uniprot.org/uniprot/Q9UPP2 (Boy you picked a weird one)

And then you can look up the SNP to find out what the minor allele at https://www.ncbi.nlm.nih.gov/projects/SNP/

https://www.ncbi.nlm.nih.gov/projects/S ... s=11063263

If you look under "MAF/MinorAlleleCount:" it says "A=0.3628" And that means that A is the minor allele and it shows up in 36% of the populations.

So you have the most common form of the SNPs.

I have found that when a SNP shows up in less than 20% of the population it is a gene you should take note of. Rare SNPs, like under 4% are crucial to understand.

AspieGenes
Posts: 114
Joined: Wed Sep 28, 2016 12:32 pm

Re: How to reduce stimming

Postby AspieGenes » Thu Dec 22, 2016 11:04 am

Nikkie111 wrote:
sure, here is what I think helped:
- virastop+OLE + monolaurin (my boy kept on getting croup constantly to a level of hospitalisation+steroids for him to be able to breath and only when I did these antivirals he never got it again)
- IMD microsilica - I suspect it's strong binder and takes some metals out of the gut
- 5 rounds of DMSA but I know you're not a fan
- GAPS diet with kefir - but stopped all dairy recently due to glutamate concerns
- molybdenum
- quite a lot of B1 but not Benfotiamine!
- celery juicing just to keep liver happy

what I added recently and saw even more progress especially playing with others, speech and academically (he's 4 but has started reading pretty well!)
- Symprove probiotic - it's liquid and goes all the way down to the gut BUT it's very expensive! We tried hundreds of probiotics and nothing ever helped
- MB12 shots from coastal pharmacy + methyl folate+ some Bs
- just started valtrex a week ago
- Buhner's herbal protocols for his gut infection - BUT I am new to this so I 'd hate to recommend something that I don't have much experience on. These are very strong herbs! We started Japanese knotweed few days ago which is for overall inflammation incl brain, ad my boy came up with some fantastic stuff, so I am extremely positive for this one already..... Herbs include the ones for antibacterial action and more on immune support, to increase the white blood cells and especially CD 57 which is a good marker for immune
- lubrokinase to break the biofilm just before the antibacterial herbs
- just a bit of no fenol with all the herbs as they are very high phenol
- diflucun when we are killing stuff and yeast is all over the place

Also maybe give tiny bit of no fenol with your Lutimax as it's high in salicylates I think (is the diet low phenol?).

FWIW you can lower glutamate with taurine and NAC, or try not to give high glutamate foods. Start eliminating they key artificial ones and the fermented ones and stuff like milk and yogurt


The things I like on here: Molybdenum which I think is soooo underrated and over looked in the ASD community, and Japanese Knotweed. Knotweed has a ton of resveratrol and resveratrol seems to have a bunch of different effects on the damage that glutamate can cause.

https://www.ncbi.nlm.nih.gov/pubmed/17554623

Reseveratrol was one of my first AHA supplements. But I think of it more as a drug and since I fied everything else I do not take it but for some wine now and then.

IF anyone is concerned about candida or yeast you need to look at biotin and maganese. These will help the body break down the fatty acids that the yeast like to eat. I had horrible seb derm on my scalp and face that was hideous. No dermatologist could fix it. Taking biotin and cutting out certian fats from my diet (palm oil) cured it 100%.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: How to reduce stimming

Postby FatherOf2 » Thu Dec 22, 2016 12:00 pm

Nikkie111 wrote:sure, here is what I think helped:
- virastop+OLE + monolaurin (my boy kept on getting croup constantly to a level of hospitalisation+steroids for him to be able to breath and only when I did these antivirals he never got it again)
- IMD microsilica - I suspect it's strong binder and takes some metals out of the gut
- 5 rounds of DMSA but I know you're not a fan
- GAPS diet with kefir - but stopped all dairy recently due to glutamate concerns
- molybdenum
- quite a lot of B1 but not Benfotiamine!
- celery juicing just to keep liver happy

what I added recently and saw even more progress especially playing with others, speech and academically (he's 4 but has started reading pretty well!)
- Symprove probiotic - it's liquid and goes all the way down to the gut BUT it's very expensive! We tried hundreds of probiotics and nothing ever helped
- MB12 shots from coastal pharmacy + methyl folate+ some Bs
- just started valtrex a week ago
- Buhner's herbal protocols for his gut infection - BUT I am new to this so I 'd hate to recommend something that I don't have much experience on. These are very strong herbs! We started Japanese knotweed few days ago which is for overall inflammation incl brain, ad my boy came up with some fantastic stuff, so I am extremely positive for this one already..... Herbs include the ones for antibacterial action and more on immune support, to increase the white blood cells and especially CD 57 which is a good marker for immune
- lubrokinase to break the biofilm just before the antibacterial herbs
- just a bit of no fenol with all the herbs as they are very high phenol
- diflucun when we are killing stuff and yeast is all over the place

Just a little note, as I see you're giving proper drugs, not sure if you give anything herbal for yeast etc, but don't give it too close to drugs as they can be P450 inhibitors which means more or less of that drug can stay in your boy's system (diflucun does the same). Personally I do all herbs many hours away from any drugs
Also maybe give tiny bit of no fenol with your Lutimax as it's high in salicylates I think (is the diet low phenol?).

FWIW you can lower glutamate with taurine and NAC, or try not to give high glutamate foods. Start eliminating they key artificial ones and the fermented ones and stuff like milk and yogurt

Actually, the only things I am giving my son are:
- Lamictal for abnormal EEG
- Trileptal for abnormal EEG (minimum dose, most likely will stop this one after we reach our target dose of Lamictal)
- ornitihine (my son has high ammonia in blood)
- carnosine (has some anti-seizure properties)
- vit B complex (my son doesn't eat greens or any vegitables, so this is a substitute)
- vit C (anti-oxidant, chelates lead at high doses)
- vit E (anti-oxidant)
- selenium (anti-oxidan, works in combination with vit E)
- taurine (has anti-seizure properties, helps with sleep)
- phosphatidylserine (evens out the mood, but I am skeptic)
- sulphoraphane (anti-oxidant, in clinical trials for autism)
- branched chain amino acids (no strong reason except some autistic children have abnormal processing of BCAA's)
- claritin + singulair (for his seasonal allergies, but I don't think they do anything)
- casein-free diet (my son is allergic to milk according to his blood test, he also consumes minimum gluten)

I will start Benfotiamine in a few weeks. Right now my son is enjoying a good boost of socialization and happiness from building up the Lamictal dose, which I don''t want to interfere with unknowns. Moly would be another thing to try. I am thinking that stimming could also be related to yeast. So, may be I will try another course of Amphotericin B to reduce yeast. These days I am very conservative about what I give to my son. The fewer things the better. Any additional drug or supplement will have to earn their place. Visual stimming is my biggest concern right now, it prevents him from focusing. OCD is too (obsessed with trucks, DVD menus)

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: How to reduce stimming

Postby FatherOf2 » Thu Dec 22, 2016 2:04 pm

AspieGenes wrote:Ativan is much different tan Klonopin in its mechism of action. Klonopin affects glutamate decarboxylase activity while Ativan does not. And Ativan is much stronger, in my experience. When I have a panic attack and I take Klonpin it only brings me back to normal. Ativan would knock me out. If I am not having a panic attack and I take Klonopin I usually fall asleep. To me the effect of klonopin is much more related to the amount of glutamate I have surging in my body.

On your list, I would avoid NAC, Dextromethorphan, and the Cycloserine.

On the genetics.

I spend the last 10 years understanding genetic stuff and it was a full time jobs and I was living in a university health sciences library most of the time so I get it. i am afraid people were thinking this genetics stuff was going to lead to some easy results. The results cam be found but it takes a lot of knowledge and work.

You can send them to me if you want and I can tell you what I see for what it is worth. i have several other peoples genetics with four others who have autism.

On the meaning of 23andme...

Thanks for explaining genetics. I wish 23&me summarized all that data and reported all mutated genes.
Why would you avoid NAC? I am slowly converging to no choices left to fight glutamate except the one am I am already using - Lamictal. Klonopin can help a lot in Landau-Kleffner Syndrome, which is often misdiagnosed as autism. For example, this story: http://community.babycenter.com/post/a39321253/dd_and_her_new_dx..._partly_a_game_changer_partly_the_same..._very_long
Then, she was given clonazepam (a benzo) as a last ditch effort to try to gain some traction. OVERNIGHT, she started speaking. She started hearing/listening to instructions. She went from no words to full sentences in the matter of days. Because she could read, it all fell into place for her. Six months later, she graduated out of speech therapy (!!!!!!!) with no issues at all -- testing within her age group or beyond it. This child had no functional speech and untestable receptive skills before. We'd worked hard through DIR to gain some kind of communication, and we did... but this? This was incredible...
Her EEGs were always suspicious, but one key feature was missing: ESES -- a very specific pattern that shows up in sleep. What did show up was a slowing in one part of her brain. No one knew why... but this doc did. It was showing us what we'd been looking for all along: a deep, deep foci for her seizures and, really, ESES which had stopped when we gave her clonazepam. Diagnosis? Landau-Kleffner Syndrome.

I will consider it in the future if we discover that Lamictal doesn't control his night-time spiking. I think most doctors incorrectly ignore abnormal EEG during sleep if it doesn't technically qualify as LKS. Any abnormalities in EEG, even though not seizures, will have a similar but may be milder effect than LKS, but will still manifest themselves as autism.
Could you look at my list of current supplements in the previous post and see if something doesn't make sense.

AspieGenes
Posts: 114
Joined: Wed Sep 28, 2016 12:32 pm

Re: How to reduce stimming

Postby AspieGenes » Thu Dec 22, 2016 2:25 pm

FatherOf2 wrote:
Nikkie111 wrote:sure, here is what I think helped:
- virastop+OLE + monolaurin (my boy kept on getting croup constantly to a level of hospitalisation+steroids for him to be able to breath and only when I did these antivirals he never got it again)
- IMD microsilica - I suspect it's strong binder and takes some metals out of the gut
- 5 rounds of DMSA but I know you're not a fan
- GAPS diet with kefir - but stopped all dairy recently due to glutamate concerns
- molybdenum
- quite a lot of B1 but not Benfotiamine!
- celery juicing just to keep liver happy

what I added recently and saw even more progress especially playing with others, speech and academically (he's 4 but has started reading pretty well!)
- Symprove probiotic - it's liquid and goes all the way down to the gut BUT it's very expensive! We tried hundreds of probiotics and nothing ever helped
- MB12 shots from coastal pharmacy + methyl folate+ some Bs
- just started valtrex a week ago
- Buhner's herbal protocols for his gut infection - BUT I am new to this so I 'd hate to recommend something that I don't have much experience on. These are very strong herbs! We started Japanese knotweed few days ago which is for overall inflammation incl brain, ad my boy came up with some fantastic stuff, so I am extremely positive for this one already..... Herbs include the ones for antibacterial action and more on immune support, to increase the white blood cells and especially CD 57 which is a good marker for immune
- lubrokinase to break the biofilm just before the antibacterial herbs
- just a bit of no fenol with all the herbs as they are very high phenol
- diflucun when we are killing stuff and yeast is all over the place

Just a little note, as I see you're giving proper drugs, not sure if you give anything herbal for yeast etc, but don't give it too close to drugs as they can be P450 inhibitors which means more or less of that drug can stay in your boy's system (diflucun does the same). Personally I do all herbs many hours away from any drugs
Also maybe give tiny bit of no fenol with your Lutimax as it's high in salicylates I think (is the diet low phenol?).

FWIW you can lower glutamate with taurine and NAC, or try not to give high glutamate foods. Start eliminating they key artificial ones and the fermented ones and stuff like milk and yogurt

Actually, the only things I am giving my son are:
- Lamictal for abnormal EEG
- Trileptal for abnormal EEG (minimum dose, most likely will stop this one after we reach our target dose of Lamictal)
- ornitihine (my son has high ammonia in blood)
- carnosine (has some anti-seizure properties)
- vit B complex (my son doesn't eat greens or any vegitables, so this is a substitute)
- vit C (anti-oxidant, chelates lead at high doses)
- vit E (anti-oxidant)
- selenium (anti-oxidan, works in combination with vit E)
- taurine (has anti-seizure properties, helps with sleep)
- phosphatidylserine (evens out the mood, but I am skeptic)
- sulphoraphane (anti-oxidant, in clinical trials for autism)
- branched chain amino acids (no strong reason except some autistic children have abnormal processing of BCAA's)
- claritin + singulair (for his seasonal allergies, but I don't think they do anything)
- casein-free diet (my son is allergic to milk according to his blood test, he also consumes minimum gluten)

I will start Benfotiamine in a few weeks. Right now my son is enjoying a good boost of socialization and happiness from building up the Lamictal dose, which I don''t want to interfere with unknowns. Moly would be another thing to try. I am thinking that stimming could also be related to yeast. So, may be I will try another course of Amphotericin B to reduce yeast. These days I am very conservative about what I give to my son. The fewer things the better. Any additional drug or supplement will have to earn their place. Visual stimming is my biggest concern right now, it prevents him from focusing. OCD is too (obsessed with trucks, DVD menus)



Just my thoughts. Vitamin C may increase the production of BH4. More BH4 means more catecholamines which might mean more stimming.
https://www.ncbi.nlm.nih.gov/pubmed/12522125

Your sone might not be eating greens for a reason, one of them might be the high folate or something else bothers him. Children's bodies are smart.

Selenium is one to be careful with since it might lower blood sugar and therefore increase norepineherine.

Nikkie111
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Re: How to reduce stimming

Postby Nikkie111 » Fri Dec 23, 2016 5:47 pm

Aspie great stuff about Japanese knotweed, yes I see it already it's odd it's like something is unblocked on him. I'd love to try it as well but don't want to waste this gems on me :lol: also thanks for he molybdenum/biotin tip that's exactly what my doc said as well!! I give daily just molybdenum and biotin on and off but I ll add this in more consistently!

Fo2 it's great you re taking it easy and don't want to give more stuff however tempting it might be, and it's even more fantastic that he's doing great socially!! Personally I'd be careful of Branched Amino Acids, I was giving them as well till I read in quite a few articles about them increasing toxicity in the brain/glutamate and plasma ammonia in high doses
I'd be a bit weary of selenium as well either I'd give it with other minerals or at least not very often
Stimming/OCD is a symptom, I personally would focus bit more in the cause, if you could see his Cd57 marker that would probably be helpful to to understand what his immune is like

Good luck :wink:

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sat Dec 24, 2016 2:55 am

Nikkie111 wrote:Personally I'd be careful of Branched Amino Acids, I was giving them as well till I read in quite a few articles about them increasing toxicity in the brain/glutamate and plasma ammonia in high doses
I'd be a bit weary of selenium as well either I'd give it with other minerals or at least not very often
Stimming/OCD is a symptom, I personally would focus bit more in the cause, if you could see his Cd57 marker that would probably be helpful to to understand what his immune is like

It is amazing how every supplement or drug has two sides to it. Vit C is an anti-oxidant on one hand and promotes cancerous growth in tumors on the other hand. Vit E + selenium are also anti-oxidants but also increase risk of prostate cancer. BCAA indeed contribute to glutamate production, but also to GABA production. What made me give it to my son is this article http://www.news-medical.net/news/20120907/BCAA-supplementation-may-treat-autism-andor-epilepsy.aspx which states that BCAA can have anti-epileptic properties in some autistic patients. Selenium is on my list because it reduces seizures and chelates mercury probably very weakly in both cases.

AspieGenes
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Re: How to reduce stimming

Postby AspieGenes » Sat Dec 24, 2016 10:13 am

FatherOf2 wrote:
Nikkie111 wrote:Personally I'd be careful of Branched Amino Acids, I was giving them as well till I read in quite a few articles about them increasing toxicity in the brain/glutamate and plasma ammonia in high doses
I'd be a bit weary of selenium as well either I'd give it with other minerals or at least not very often
Stimming/OCD is a symptom, I personally would focus bit more in the cause, if you could see his Cd57 marker that would probably be helpful to to understand what his immune is like

It is amazing how every supplement or drug has two sides to it. Vit C is an anti-oxidant on one hand and promotes cancerous growth in tumors on the other hand. Vit E + selenium are also anti-oxidants but also increase risk of prostate cancer. BCAA indeed contribute to glutamate production, but also to GABA production. What made me give it to my son is this article http://www.news-medical.net/news/20120907/BCAA-supplementation-may-treat-autism-andor-epilepsy.aspx which states that BCAA can have anti-epileptic properties in some autistic patients. Selenium is on my list because it reduces seizures and chelates mercury probably very weakly in both cases.


Everything in life has two sides. Do not forget this in your child's health. The body will naturally seek out balance, because health it is not one side or the other, but in a balance between the opposing sides. This is why kids are "picky eaters". The listen more to their bodies than adults do and you can learn alot by understanding why they do not want certain foods. Look for the things that tie them together.

I have leaned about this balance the hard way and it has changed the way I take supplements and eat. All of my supplements now I take as needed, always balancing my energy. Not to high or not to low based on the time of day.

The great yin and yangs I see in the body are GABA/Glutamate and Hydrogen Perioxide/Superoxides respectivly. Learn to balance those and you will feel almost invisible. Yeah, that is a weird term, but I have found that feeling too good is just as unhealthy as feeling too bad.

High Glutamate and high Superoxides lead to over active nervous system disorders and autoimmune disorders. High GABA and high Hydrogen Perioxides lead to depressive disorders and cancers. These can cycle in days as well, making someone look "bipolar".

So while Vitamin C will lower superoxides it will also create H2O2 (and perhydroxyl radicals). So if you are not able to get rid of H2O2 and you have take Vitamin C you could be making yourself feel worse and making it more likely to get cancers.

Me? I am huge on the superoxide side. I have so many enzymes in my body that are slow that are supposed to turn superoxides into H2O2, like MAOA and Sulfite Oxidase. Hence my lifelong nervous system issues and autoimmune disorders.

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sat Dec 24, 2016 2:27 pm

Aspie, I downloaded my son's data to Genetic Genie website and it told me the following methylation mutations:
MAO A R297R +/+ (warrior gene)
MTHFR A1298C +/+ (I already knew about it)
MTHFR 03 P39P +/+ (need to investigate further)
BHMT-02 +/+

I suspected that my son had the warrior gene due to his anger and SIBs but this is the first time I confirmed it. From Yasko:
rs6323 - MAOA R297R (Risk Allele: T): Slower breakdown of Serotonin. Can lead to high/low cycling of neurotransmitter. This enzyme requires B2 (riboflavin) in sufficient levels to function normally. Mutations are associated with mood swings, aggressive behavior, depression, anxiety, OCD and intolerance of methylfolate (which increases neurotransmitters that can't be broken down by MAO A,causing feelings of overstimulation).

So, no SSRI's for my son and no methylfolate. But yes to B2, Progesterone, and anything that promotes MAOA activitity (drug Respen-A and herb Rauvolfia serpentina are mentioned on warriorgene.info website and also here http://www.naturalnews.com/031525_Respen-A_autism.html). By the way, on the OAT test, my son showed low B2.

You mentioned MAOA mutation in you too. Is it homozygous? What would you advise for drugs or supplements. You mentioned Klonopin, molybdenum, B2 (from my memory). What else helps you?

AspieGenes
Posts: 114
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Re: How to reduce stimming

Postby AspieGenes » Sat Dec 24, 2016 4:38 pm

FatherOf2 wrote:Aspie, I downloaded my son's data to Genetic Genie website and it told me the following methylation mutations:
MAO A R297R +/+ (warrior gene)
MTHFR A1298C +/+ (I already knew about it)
MTHFR 03 P39P +/+ (need to investigate further)
BHMT-02 +/+

I suspected that my son had the warrior gene due to his anger and SIBs but this is the first time I confirmed it. From Yasko:
rs6323 - MAOA R297R (Risk Allele: T): Slower breakdown of Serotonin. Can lead to high/low cycling of neurotransmitter. This enzyme requires B2 (riboflavin) in sufficient levels to function normally. Mutations are associated with mood swings, aggressive behavior, depression, anxiety, OCD and intolerance of methylfolate (which increases neurotransmitters that can't be broken down by MAO A,causing feelings of overstimulation).

So, no SSRI's for my son and no methylfolate. But yes to B2, Progesterone, and anything that promotes MAOA activitity (drug Respen-A and herb Rauvolfia serpentina are mentioned on warriorgene.info website and also here http://www.naturalnews.com/031525_Respen-A_autism.html). By the way, on the OAT test, my son showed low B2.

You mentioned MAOA mutation in you too. Is it homozygous? What would you advise for drugs or supplements. You mentioned Klonopin, molybdenum, B2 (from my memory). What else helps you?


The warriror SNP, which I hat to use that name because how we act will depend on transporters and receptor genetics as well, is a pretty common SNP. The SNP I have is very rare, like only 3% of Caucasians have it.

But that MAOA and the MTHFR tells me he might need B2 like me.

I would stay away from herbs for a lot of reasons but mainly because he does not need them.

I will have more after I go through the genetics.

FatherOf2
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Re: How to reduce stimming

Postby FatherOf2 » Sun Dec 25, 2016 5:01 pm

Thanks, Aspie. I have been reading my son's mutations: "When a (+/+) MAO-A mutation is combined with a (+/+) or (+/-) COMT V158M mutation, imbalances in neurotransmitters may be more severe. These imbalances can potentially lead to neuropsychiatric conditions and symptoms such as Obsessive Compulsive Disorder (OCD), mood swings, and aggressive and/or violent behavior." He has MAO-A (+/+) and COMT V158M (+/-).

According to nutrahacker analysis of these two genetic mutations in my son:
MAO-A rs6323 - Oxidizes serotonin, dopamine, epinephrine, norepinephrine - need Progesterone - avoid Curcumin, Estrogens, Androgens (this explains why Enhansa/Curcumin increased irritability in my son)
COMT rs4680 - Degrades catecholamines, Phase II, inactivates hydroxy-estrogens - need Hydroxy B12 - avoid Methyl B12, methyl donors (this explains why we never saw positives from MB12 shots)

For his MTHFR mutations (MTHFR A1298C +/+ and MTHFR 03 P39P +/+), which nutrahacker recommends methylfolate, B12, B2, Ornithine (to reduce ammonia due to low BH4), Potassium. Methylfolate may not be good due to the MAO-A mutation and interaction with Lamictal, shich he is taking. But Hydroxy B12, B2 R-5-P, Ornithine and Potassium might be god for several of his mutations.

Another interesting mutation is heterozygous GSTP1 rs1695 AG: Conjugation toxins to glutathione. Persons, having the alleles AA orAG had an increase ininflammatory interleukin-6 (IL-6)upon supplementing alpha-tocopherol (the most common form of Vitamin E in a North American diet) while those with GG saw a decrease. Need NAC, Whey. Avoid vit E. I guess that means that I have to stop vit E.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: How to reduce stimming

Postby FatherOf2 » Sun Dec 25, 2016 5:48 pm

I ended up purchasing the complete mutation report from nutrahacker. The neurotransmitter section is quite interesting and explains a lot of things I see in my son. In addition to the homozygous MOA-A mutation, he has:

DAOA rs701567 (+/+) - D-amino acid oxidase activator, which degrades D-serine, a potent activator of NMDA receptors. Associated with cognitive manic symptoms, Need Idebenone, Piracetam, Magnesium, Taurine, Lithium orotate. I see my old friends Piracetam and Taurine on this list.

GAD1 rs3749034 (+/+), GAD1 rs3828275 (+/+) - Catalyzes production of GABA from glutamate. High glutamate, low GABA. Need Taurine, Theanine, NAC, Glycine, Vitamin B3. Avoid MSG.

Basically, these mutations tell me that my son has high glutamate, which probably explains his hyperactivity, stimming, abnormal EEG. He also have high serotonin, dopamine, epinephrine, and norepinephrine which explain his anger issues. So, the stuff he needs:

- B2 R-5-P (promote MAO-A)
- Hydroxy B12 (degrade catecholamines)
- Ornithine (to reduce ammonia due to MTHFR mutation, already taking it)
- Taurine (help with GABA, already taking it, perhaps I will start giving it twice a day)
- NAC (need for his affected detox genes)

Progesterone can help with his MAO-A mutation. He also has two homozygous mutations leading to high estrogen. Nutrahacker recommends DIM (Diindolylmethane), which is an interesting hormone-balancing supplement. I am a bit scared messing with hormones at this time.


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