All About Diego, figuring out a plan

[tanyalynn]

I'm hoping for input to help me prioritize my next steps for DS. Pros, cons, things I may not be considering.

For quick background, I figured out I got sick due to the mercury in my amalgam fillings and both my kids are affected. At this point, I'm feeling and doing a lot better, got my amalgams out and did Andy Cutler-style frequent, low dose chelation for a couple years, and now I'm starting to do some non-Cutler-approved stuff now that I'm a lot more robust than I was a few years ago.

DS just turned 4 in April. Everything has been slower going with the kids, partly because my brain was about as powerful as applesauce for a couple years there, but partly because, well, I'm not sure. DD has always seemed less affected, reducing liver stress a couple years ago really reduced her tantrums/overreactions, but some of the same concerns apply to her as well, usually less so (digestive moreso, everything else less but non-zero).

Things of concern:
-I know I'm not done chelating them, I can see the effects of medium-dose alpha lipoic acid, it still mobilizes a lot of metals
-both kids' digestion is iffy, we've been plagued by stomach bugs this spring
-I think DS's cognitive development is still being delayed relative to where he should be--it's not below typical, but I still see it being affected
-he needs a LOT of vitamin C every day, and this is resistant to coming down--it _did_ when he was little, say < 2yo, to maybe 500mg/day type levels, but either he's having a harder time clearing metals and junk, or it's not all due to circulating toxins, or something else?

I've been giving a long list of supps for a few years now. I am pretty sure that if I stopped them, DS would start spinning and/or walking in circles again, and after that I'm not sure what would crop up, maybe mouthing? Zinc's been involved there a couple times.

The current list, roughly:
regular-ish multivit w/ 400 mcg folic acid, 5mg zinc, typical other stuff
B-complex with 200 mcg folate and 200mg B6 (Thorne Bcomplex #6)
modifilan
vitamin C
cod liver oil (about 4,000 IU of vit A/day)
Carlsons D drops
Carlson vitamin K2 10mg (very high dose, specific to our weird family history)
zinc picolinate, 15mg
tissue salts (bioplasma, calc phos, kali phos, silica)
vegan DHA supp (recent addition)
lutein (recent addition)
melatonin 2mg
multi-mineral supp (cal, mag, various others)
mag citrate 300 mg
B12 hydroxy form, 2,000 mcg
biotin 8mg

Dang, that's a list.

Anyway... I'm not giving dmsa/ala now because their stomachs have been too sensitive. Last round caused DD stomach pains, stopped very quickly, and DS's stomach is fairly sensitive, whereas 2 years ago, it wasn't really. And a big part of how I use dmsa & ala is to ramp up the vitC I give them when they take the dmsa or ala... it seems to make a big difference in how they tolerate it, ditto for me--but when you're starting with as much as they need on a daily basis, it's hard to go even higher. But tracking vitC need while taking dmsa or ala is a very useful tool in figuring out appropriate dosage--it's how I did it for myself, I know how much I can take and feel ok vs feeling slagged out and icky-bad. And without getting their vitC needs down, this tool is lost to me.

I have slacked on probiotic foods, I've got kimchee on the way again right now. And I have the Yasko pancreas glandulars and digestive enzymes on order.

Tentatively, I'm thinking:
-get the kimchee made, start it
-get the glandulars in, figure out how to use them, start them
-re-find the Yasko page that discusses health/behavior issues with the various mutations, see which jump out at me as likely with my family history, look at the list
-read about latent viruses and what to do about them (DS got sick a lot as a little kid, and we're back in a cycle of getting sick a lot more than average--vitC trying to make up for backed-up methylation? but why would methylation almost seem slower than before?)

Where do I fit in mamafish's most recent advice? Which I'm going to re-post over here so I have it all together, which was the beginning Yasko supps (and blending Yasko's low doses with my high doses is, well, confusing... ) then something... yeah copy/paste next.

Things I'm overlooking? Opinions on what to learn first, implement first? Of course we're going to be travelling half the summer, so whatever I implement will be quite slow, while we're away from home I'll mostly be sticking with the basics and helping the kids deal with the stress of being away from dad for a month.

[mamafish9]

OK, heading at this with my Yasko hat on...

1) She's all about low dose B6. B6 can aggravate things for some genetics. Maybe experiment with the basic Thorne B complex and see if that makes any difference?

2) Guessing he's an undermethylator (COMT-- in Yasko speak), from the sickness stuff. Also, COMT++ or +- types detox well and fast - so that fits your daughter maybe more. COMT-- struggle more. They do well with lots of methyl groups. So maybe add in some methyl donors for him at some point (with good basic methylation supports in place - e.g. maybe some intrinsic factor and more B12, I'd try some SAMe and see what happens).

3) If he's COMT-- (depending on his VDR/taq status too), he could be low dopamine, which can have cognitive consequences. How is his blink rate? (<15/min is low dopamine, 15-30/min normal, 30+ high dopamine).

4) Glutamates. Pulling metals raises glutamate levels, and your DS might be sensitive to those (stimming behaviors are often glutamate related). Yasko has a list for this - I'd try gaba and/or valerian root, and grapeseed extract as my first two (pycnogenol is also very good for healing glutamate receptors, but it's more expensive - see if the grapeseed extract does anything first.

5) Melatonin - needing this could be a sign of needing more methyl groups (serotonin + methyl group = melatonin). Does he show signs of low serotonin too, or just sleep issues?

6) Oxidative stress. This is actually the first thing that popped for me. Pulling metals causes oxidative stress on the body, which does several things, including demyelinating brain neurons. Lots of people on Yasko's forums find her basic remyelinating supps helpful for bouncing back faster after detox (i.e. lossing the behavior/cognitive regressions faster). She does some aggressive remyelination in the last stage of her program, but the basic remyelinating supps are all inexpensive and very supportive - ora-placenta, ashwagandha, spingolin, and spirulina (yeah, I know that last one may be something you chose to avoid with mercury issues). Second part of reducing oxidative stress is taking some antioxidants. C is an antioxidant, as you know, and I'm wondering if that's what it's fighting for him? Yasko has a new antioxidant blend out, here it is so you can peruse the ingredients list.

[tanyalynn]

Originally Posted by mamafish9

OK, heading at this with my Yasko hat on...

1) She's all about low dose B6. B6 can aggravate things for some genetics. Maybe experiment with the basic Thorne B complex and see if that makes any difference?

I can try that.

2) Guessing he's an undermethylator (COMT-- in Yasko speak), from the sickness stuff. Also, COMT++ or +- types detox well and fast - so that fits your daughter maybe more. COMT-- struggle more. They do well with lots of methyl groups. So maybe add in some methyl donors for him at some point (with good basic methylation supports in place - e.g. maybe some intrinsic factor and more B12, I'd try some SAMe and see what happens).

From reading, the COMT-- stuff fits DS best, so I think that's a good guess. When you say methyl donors, the only ones that pop to my mind are methyl B12, TMG, and DMG. Adding SAMe to the mental list.

3) If he's COMT-- (depending on his VDR/taq status too), he could be low dopamine, which can have cognitive consequences. How is his blink rate? (<15/min is low dopamine, 15-30/min normal, 30+ high dopamine).

I'll check tomorrow, I haven't seen blatant things that I think of as dopamine-related (in him or my family history--for now, I'm basically assuming he's mostly taking after me, allowing for just a little bit of contribution from DH), but maybe I'd miss them.

4) Glutamates. Pulling metals raises glutamate levels, and your DS might be sensitive to those (stimming behaviors are often glutamate related). Yasko has a list for this - I'd try gaba and/or valerian root, and grapeseed extract as my first two (pycnogenol is also very good for healing glutamate receptors, but it's more expensive - see if the grapeseed extract does anything first.

I know diddly-squat about glutamates. I will read more about all those and see if I can get a working knowledge there.

5) Melatonin - needing this could be a sign of needing more methyl groups (serotonin + methyl group = melatonin). Does he show signs of low serotonin too, or just sleep issues?

I don't think I've seen low serotonin signs, but maybe I just don't know what it would look like in a 4-year old.

6) Oxidative stress. This is actually the first thing that popped for me. Pulling metals causes oxidative stress on the body, which does several things, including demyelinating brain neurons. Lots of people on Yasko's forums find her basic remyelinating supps helpful for bouncing back faster after detox (i.e. lossing the behavior/cognitive regressions faster). She does some aggressive remyelination in the last stage of her program, but the basic remyelinating supps are all inexpensive and very supportive - ora-placenta, ashwagandha, spingolin, and spirulina (yeah, I know that last one may be something you chose to avoid with mercury issues). Second part of reducing oxidative stress is taking some antioxidants. C is an antioxidant, as you know, and I'm wondering if that's what it's fighting for him? Yasko has a new antioxidant blend out, here it is so you can peruse the ingredients list.

Oxidative stress I think is part of it. He originally just needed 1mg of melatonin, back a while, I think when his vitC need first jumped, he started having trouble falling asleep and I eventually increased his melatonin to 3mg, and we've just recently reduced it to 2.

I think I did the same big jump in melatonin, then a later reduction--that seemed like a reflection of oxidative stress in me, so maybe the two fit together there.

Oh so depressing to think of demyelinating neurons. But that could be the thing for his cognitive stuff. When he was less than 2, he was counting out items up to almost 20, one at a time. Just recently (he just turned 4) he's back to being able to count almost as high--not quite, but close. That's not normal development--it didn't plateau, it went backwards. I'll check out those supps.

Thank you. ... and anyone with other hats they want to wear, throw 'em into the ring too!

[Koalamom]

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[tanyalynn]

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[Koalamom]

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[tanyalynn]

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[mamafish9]

Replying to your stuff in purple, which doesn't quote for some reason.

Methyl donors. DON'T do TMG (has to do with the short pathway around the methylation cycle, it feeds the wrong stuff). DMG is a methyl donor, but Yasko advises holding off on it until you have the rest of the methylation cycle supported (so at a minimum, in your case, I'd say more B12). Methyl B12, yeah, you could add some of that in. Other methyl donors she uses a lot (particularly for comt--) include curcumin & quercetin. Carnitine & theanine as well (good for some genetics), and melatonin (why melatonin doesn't work for some kids, I think).

SAMe is the big one though, and the most direct (it's the substance that actually donates methyl groups in most methylation reactions). If you order hers, start low, 1/4 tab at most, and give in the morning, it can be energizing. I have DS up to 1/2 tab now, and it's been very good for him. Note that before upping his B12 a ton, he had very little tolerance for methyl donors, now he's doing quite well on small amounts (he's comt +-).

Dopamine. DS doesn't have any of the typical signs of low dopamine (except maybe stimming sometimes, sort of like Parkinsons type more jerky movements). But he has a blink rate of 4x a minute, and clear test results that he is breaking down dopamine faster than ideal. Low dopamine is not unusual for comt--, and there are a list of supports to help, so check his blink rate - if it's low, I'd suggest you consider her comt-- supp . It has little bits of lots of methyl donors, and supps to support dopamine. You wouldn't need to use the full 2 caps/day likely, and it would let you try more methyl support. Don't use it if dopamine is normal though, in that case, just try adding methyl donors.

Serotonin. Low serotonin in my son looks like overemotional. He swings from high to low, which can also mess with melatonin. The fact that your son's melatonin needs went up when his C needs went up suggests to me that he has oxidative stress, and that's eating methyl groups, which means he doesn't have enough methyl groups for lots of things. So the first place I'd look to support him, based on the conversation here, would be add in some more B12, methyl groups, and maybe dopamine support if necessary, and see where that leaves him. I'd say if it's working well, you'd see his need for melatonin and/or C come down some.

Step 2, I'd add antioxidants and remyelinating supps (the counting is classic regression, typical of demyelination). But do that after adding the stuff above and waiting a couple of weeks. That way you'll know the impacts of each, so you can decide where to spend $$ moving forward.

[tanyalynn]

Wow, counting blinks is fascinating.

me: 23
DD: 13
DS: he _does_ blink, doesn't he? (I was sure I must've just blinked at the same time as him, many, many times) ... just re-counted, I saw 2.

Um, I will read more about low dopamine, and decide what I want to buy and order _more_ stuff.

[mamafish9]

Originally Posted by tanyalynn

Wow, counting blinks is fascinating.

me: 23
DD: 13
DS: he _does_ blink, doesn't he? (I was sure I must've just blinked at the same time as him, many, many times) ... just re-counted, I saw 2.

Um, I will read more about low dopamine, and decide what I want to buy and order _more_ stuff.

LOL. Welcome to my "...oh, shit..." #2 moment with DS. He has some minutes where he doesn't blink, I swear!!! Hurt my eyes trying to count his lack of blinks.

Yasko's general approach to low dopamine is to fix methylation and the neurotransmitters will rebalance themselves. However, with comt--, she directly supports dopamine a little as well. Check out that supp I linked to above, it seems tailor made to your son at the moment. For him, honestly, I might tackle that before digestion even (guessing the lack of methyl donors is messing with a lot of stuff for him).

[FireWithin]

low dopamine - my boys blinked less than 6x each - and that was a generous count. DH less than 9. Hard to count me, but I think around 12.

Off to try to learn something new. . . maybe we have a genetic comt-- thing going on now.

[chlobo]

How do you count yourself?

Gonna count the kids tomorrow. Low dopamine would not surprise me at all.

Ooops, sorry, did I hijak.

[tanyalynn]

DH couldn't count himself, I just did. Want to re-count, but initial count is 7. I need to figure this out a bit more--how much would be genes just expressing themselves, vs a very, very worn down person? Though I don't know that my approach should change either way.

I tried not to think too much about blinking or not blinking (like the pink elephant) but I just counted when I felt myself blink. May ask DH to count my blinks, see if it comes out fairly similar to my count.

Thinking again, DH, when he was little, had a rep at home for being "spacey," for not paying attention to all the details. Didn't affect schoolwork, wasn't a real problem, but I'm wondering if this is a long-standing thing for him--want to understand norepinephrine vs dopamine better than I do now. Interesting.

Need to read the adult part of the forum, see what adults do. Wouldn't it be _so_cool_ if this actually made him feel better?

[mamafish9]

Tanya, most of the adults on the forum are extremely sick, so I don't know how much you'll find in there to guide you for DH.

DS has low dopamine as well, and he's not comt--. It's not unusual. Here are some of the potential causes:

1) comt-- (the comt++ mutation actually slows dopamine breakdown, which is often a good thing in our kids)

2) too much activity through the "shortcut" in the methylation cycle (via BHMT) instead of the long way around (via mthfr and stuff). So if you have mthfr mutations, or mtrr, and aren't taking enough folate or B12 to bypass those mutations, the only way you can methylate is via the shortcut. And what you often get then is more dopamine turning into norepinephrine. That looks like ADHD type behaviors for some (if norepinephrine gets too high).

3) Pancreatic issues or low protein diet, where you don't have enough tyrosine (dopamine precursor). This is part of DS' issue, but just supping tyrosine hasn't addressed it, and neither has pancreatic support (yet - this is an area that can take time to improve).

4) Low BH4. BH4 clears ammonia from your body, amongst other things. Yasko believes mthf A1298C mutations don't recycle BH2 back to BH4 well. So things that run down BH4 - high protein diet, CBS+ mutations, chronic bacterial issues, A1298C mutations, NOS+ mutations. Basically, a lot of things can run down BH4.

Unfortunately, BH4 is very tough to come by. I have some, and it's causing lots of detox for DS in very small doses. But I hope it is a key to dopamine. For us low dopamine is an important nut to crack, it tends to be involved in low language. So along with GABA, it is one of the two key issues DS has that I hope will boost his understanding of language, and eventually language acquisition.

I'm amazed how many others here have low blink rates though! In could be genetics, but I bet for many it's like for DS - just another symptom of poorly functioning methylation. Yasko's basic approach to neurotransmitters, unless you have specific genetics, is to work on getting methylation working, and then the neurotransmitters often fall into line.

[tanyalynn]

There's probably no place that Yasko has this all laid out as nicely as you do, is there. You've read til your eyes are bleeding, figuratively I hope, and then put it all together to make sense in a big-picture kind of way.

Tonight I need to think a bit more about what to do for DH. I need an Agustin plan as well as a Diego plan.

1--need to check, overall his detox genes seem good, really good

2--doesn't seem likely, the thing that "looks" lower for him and DS is the norepinephrine side, in terms of spaciness, but not in an adhd (hyperactive) way, and I'm pretty sure he doesn't have mthfr mutations, and just from general health i'd say mtrr can't be a big issue but i need to read more

3--will definitely investigate this one--would be great, because I'd hope the enzymes would start working to fix this... but I think I need a backup plan as well

4--need to read more and understand, seems like it could factor in with #3, enzymes helping with bacterial balance which is a concern I have for him

So, got one more question. I need to read more about GABA and dopamine and language... cause DS talks well. He just took a big leap with language when we got his glasses, actually. I'm assuming his brain was so busy trying to navigate the world that it didn't have a lot left over--but even beforehand, I hadn't noticed him being "behind," just quieter than DD. His vocab was ok before, now it seems really good, sentence structure/complexity as well. Any hints on whether I should abandon gaba, or assume this is possible in the realm of less-affected kids?

Do I really just need to throw myself into the forums, read and read old posts, in order to absorb all this? Where did you learn the most? You've laid it out in such an orderly, easy fashion, but you probably had to pull together lots of places to get it like that, right?

[mamafish9]

Originally Posted by tanyalynn

There's probably no place that Yasko has this all laid out as nicely as you do, is there. You've read til your eyes are bleeding, figuratively I hope, and then put it all together to make sense in a big-picture kind of way.
...

So, got one more question. I need to read more about GABA and dopamine and language... cause DS talks well. He just took a big leap with language when we got his glasses, actually. I'm assuming his brain was so busy trying to navigate the world that it didn't have a lot left over--but even beforehand, I hadn't noticed him being "behind," just quieter than DD. His vocab was ok before, now it seems really good, sentence structure/complexity as well. Any hints on whether I should abandon gaba, or assume this is possible in the realm of less-affected kids?

Do I really just need to throw myself into the forums, read and read old posts, in order to absorb all this? Where did you learn the most? You've laid it out in such an orderly, easy fashion, but you probably had to pull together lots of places to get it like that, right?

Yes, I read until my eyes bled, sorry... it's not laid out well anywhere, for things like low dopamine or even "what are all the possible sources of pancreatic issues". The forum search is pretty good, the presentations are good, but Yasko's info has evolved over time, so older posts are sometimes out of date, which doesn't help. I'm really happy to answer any questions I can, but honestly, this is one of the reasons I just started executing the program. I assumed Yasko had some good reasons behind most of her choices, so I don't know the rationale behind every supp for every gene.

Don't worry about language being fine - there are lots of even ASD kids with low dopamine, low gaba, and fine language. But for those of us with kids with stuck language, it can be an important key.

[tanyalynn]

It makes sense that you'd go with things and figure it out along the way. I'm not sure that's necessary for us--really, I want to get their digestion stabilized, sounds like I may have enough to do to keep us busy for the summer, given the amount of travel we're doing, and then keep going with the dmsa and ala. I just want to finish more ala rounds, yk? I think it's do-able, they tolerated it well before when their digestion was better.

[tanyalynn]

Supps came in (my letter e is still intermittently wonky, apologies in advance), started th comt-- supp this morning. DH took th kids on thir normal outing and said that if I hadn't givn him a warning, h would'v thought it was a vry bad day, but sinc w anticipatd issus, it was managabl. Will continu it, watch how DS's hypractivity go, hopfully improv.

Want to allow mor tim for DD's digstion to stabiliz on th spcial digstiv nzyms and loads of kimchi, thn dcid on a plan for hr.

no mor posting for m--th lttr aftr d tauntd m with th promis of working and thn stoppd working so fast. how ugly.

[mamafish9]

LOL! Tanya, did you start him on a full one of the comt-- supp? If so, you'll likely get a few fairly bad days before things level out, that's a lot to start out with (lots of methyl donors, and it sounds to me like his body was short of them, so you'll likely see some junk getting cleared - e.g. viral detox). If it gets too bad, back off on the dose. I also find it helps to split the dose up (e.g. same amount, but 3x/day instead of 1x). Don't give after about 3pm though, there is enough methyl donors in there to keep him awake at this stage.

[tanyalynn]

did 1/2, considered 1/4 but chose 1/2. Partly because I've never noticed a reaction to methyl-B12, I have some and started giving it last wk, 2 mg pr day and nothing changed, in addition to extra hydroxy-B12. So I hoped 1/2 would b not-too-bad.

Hadn't occurred to m to split the dose, that could be very helpful. My goal is to gt to 1 cap/day and stay there, is that reasonable to you?

DS had a rally runny nos mid-afternoon, very atypical, but doesn't seem sick today.

so far, today, 1/2 and things look ok but it's too early to tell yet I think.

And thanks for the advice/suggestions/everything, I'm mostly good on this new stuff to try, but still a bit uncertain, yk?