All About Diego, figuring out a plan - Page 3

[mamafish9]

Tanya, one quick thought. If you're on the perque perkies anyhow, and not actively chelating, try seriously cutting back the B complex maybe. B6 speeds up the CBS enzyme, which can increase ammonia and taurine. Ammonia in particular can sometimes cause tummy aches.

Shannon saw her B needs go down with the pancreatic enzymes, and I have DS completely off B6 now (except for a tiny little bit in his megafoods B complex). Just wondering if the combo of not actively chelating (so lower B needs), better protein digestion (so more ammonia from that) and high B6 (more ammonia) might be causing digestive issues.

[tanyalynn]

That's a thought, I can do that. I've wondered if having such long stretches as it turns out we're having between actively chelating, does everything still make sense? The zinc and mag, yeah, but I've wondered about the B6. I can drop it for a while and actually remember to give them the Perkies every day.

I asked in Chat, which was the wrong place (imagining Shannon slapping my hand), how long do you stay at one level of GABA before bumping it up? 1 today for each, no sleepiness or anything that looked odd.

I counted blinks for both just now, DS is unchanged, I counted 11 for DD in a half a minute. I want to see how that looks tomorrow, just to see if it was a fluke (I have no idea how stable it is, what with right-before-bed, A/C and fans blowing, who knows what else), but that could be good.

[tanyalynn]

Originally Posted by mamafish9

I mix supps in 6 day batches, so I give him a supp separately at first for 2-3 days, and if nothing awful happens, I mix a low dose in his 6 day blend, and then increase every 6 days.

However, gaba is calming with no downside for 90% of people. So there I'd give a small dose, just to make sure you're not in the 10% with my DS who react strongly. Then I'd march up the dose fairly quickly until you see overemotional and/or sleepy daytime behaviors. That's kind of like "bowel tolerance" - you've overshot, back off a bit, and then hold that dose.

Copied from Chat, cause I like the idea of keeping everything together so nicely.

And thank you! It's so nice to have you hold my hand through this, makes it a lot less stressful to be trying to switch things up quite a bit right before a major trip.

I think tomorrow I'll try 2 GABA, see what happens.

So... Deb, do you avoid gelatin? Since it's on the glutamate list? And homemade stock? Most of the stuff, I am fine avoiding, it's a lot of really processed stuff anyway, but some of the real foods are, well, like stock.

[mamafish9]

Thanks for keeping us all in one place .

Yeah, if you aren't actively chelating, you might experiment with what's really necessary right now. Yasko's approach to supporting metals detox is organ support and minerals support, and it's working well for DS (better than high dose B vites I think). Although he gets liver in some of his supps, so probably just gets his B's that way!

I hear you on changing things up before traveling - I pushed hard to get things on board for DS before we go to the lake this summer (of course, that meant I did it while MIL was here, so...)

If DD's blink rate is going up, watch for a day or two - if it doesn't keep going up, maybe move her to 2 digestive enzymes, at least with her larger meals?

I don't worry overly much about glutamates in foods (other than the fake stuff - but tomatoes, stuff like that, we just eat). If he ends up high glutamate on testing, I'll worry about it then. But he's always reacted badly to stock, that's one we don't do. Anything like that which really concentrates the glutamates, I did take out (fermented CLO as well, that's basically a spoonful of glutamate - other great things too, but I did pull it). And I give him 40 gelatin capsules a day .

[FireWithin]

thanks again.
I am going to try the comp-- support. It makes sense for my boys. With our histamine, detox, dopamine, serotonin, illness issues, it makes sense to try it.

I am considering the remythelation supps, but think I will hold off, or maybe it would be worth it to have in my cabinet.

I can easily test supps energetically when they are in my hand, but I'm not as successful when they are over the internet. Life would be easier if I could.

[tanyalynn]

Originally Posted by mamafish9

Thanks for keeping us all in one place .

Yeah, if you aren't actively chelating, you might experiment with what's really necessary right now. Yasko's approach to supporting metals detox is organ support and minerals support, and it's working well for DS (better than high dose B vites I think). Although he gets liver in some of his supps, so probably just gets his B's that way!

Tricky to figure out, because things were pretty stable for a long, long time. But it's a good thing to try next.

I hear you on changing things up before traveling - I pushed hard to get things on board for DS before we go to the lake this summer (of course, that meant I did it while MIL was here, so...)

If DD's blink rate is going up, watch for a day or two - if it doesn't keep going up, maybe move her to 2 digestive enzymes, at least with her larger meals?

I don't worry overly much about glutamates in foods (other than the fake stuff - but tomatoes, stuff like that, we just eat). If he ends up high glutamate on testing, I'll worry about it then. But he's always reacted badly to stock, that's one we don't do. Anything like that which really concentrates the glutamates, I did take out (fermented CLO as well, that's basically a spoonful of glutamate - other great things too, but I did pull it). And I give him 40 gelatin capsules a day .

re: blink rate, if DD's blink rate really was 11 in 30 seconds, that puts her in the normal range... I'd want to just stay steady then, wouldn't I? Though I'm not ready to bet my life on 22 blinks/min just yet, I want to see it repeated. I saw the 13-ish a few times, so I think that one was right.

re: you saw your son react to homemade stock? Or storebought, or both? Hmm... well, I will cross that bridge once I get to a nice GABA level--hopefully I can see reactions, or lack thereof, at that point.

To make a tentative plan:

Wed: +1 GABA for each (2 total), no separate b-complex

Thurs: +1/2 comt-- for DS

Fri: +1 GABA if I think I need to do that?

Sat: + 1/2 comt-- for DS, try to get to 2/day before I leave

Sun--no more changes!

[tanyalynn]

Originally Posted by Mammo2Sammo

thanks again.
I am going to try the comp-- support. It makes sense for my boys. With our histamine, detox, dopamine, serotonin, illness issues, it makes sense to try it.

I am considering the remythelation supps, but think I will hold off, or maybe it would be worth it to have in my cabinet.

I can easily test supps energetically when they are in my hand, but I'm not as successful when they are over the internet. Life would be easier if I could.

The one thing I really like about the remyelination supps, at least the ones I chose, is that they aren't expensive. A reasonable dose (2/day) for the two I chose is only $20/mo (total, not each) and given that I'm a bit worried about his brain, I liked that price.

Would it help if I pop samples in the mail? Easy to do, at least for what I've got.

[FireWithin]

Originally Posted by tanyalynn

The one thing I really like about the remyelination supps, at least the ones I chose, is that they aren't expensive. A reasonable dose (2/day) for the two I chose is only $20/mo (total, not each) and given that I'm a bit worried about his brain, I liked that price.

Would it help if I pop samples in the mail? Easy to do, at least for what I've got.

Oh yes a sample would work! As long as I have it in my hand, ideally near one of my boys. Great idea.

thanks. I will pm you.

I worry about remyleination. . . so it would be good to know if they need the support..

This would work well. I am really focused on the probiotics right now so these other things can wait a bit.

[tanyalynn]

Is there any plausible connection between either high ammonia or high taurine and nosebleeds?

Yes, we're a bloody family apparently, but this time it's DD. As of tonight, I think it's been 3 in a week, and she's not prone like DS is.

I don't see low mag symptoms (been falling asleep fine, no hyperactivity). Connecting the dots with DS was so straightforward.

[mamafish9]

Originally Posted by tanyalynn

re: blink rate, if DD's blink rate really was 11 in 30 seconds, that puts her in the normal range... I'd want to just stay steady then, wouldn't I?

D'oh!! Sorry, missed that was 11 in *HALF* a minute. Yeah, that's fabulous, if it continues, hold steady then.

Originally Posted by Mammo2Sammo

thanks again.
I am going to try the comp-- support. It makes sense for my boys. With our histamine, detox, dopamine, serotonin, illness issues, it makes sense to try it.

I am considering the remythelation supps, but think I will hold off, or maybe it would be worth it to have in my cabinet.

I can easily test supps energetically when they are in my hand, but I'm not as successful when they are over the internet. Life would be easier if I could.

I would be so happy to send you samples of anything I have so you can test them. Don't have the comt-- support (I agree that sounds like a good one for your family). But I have 4 remyelination supps - oraplacenta, sphingolin, spirulina, ashwagandha. And a bunch of other stuff...

Originally Posted by tanyalynn

Is there any plausible connection between either high ammonia or high taurine and nosebleeds?

Yes, we're a bloody family apparently, but this time it's DD. As of tonight, I think it's been 3 in a week, and she's not prone like DS is.

I don't see low mag symptoms (been falling asleep fine, no hyperactivity). Connecting the dots with DS was so straightforward.

Searched Yasko. Nosebleeds come up in several contexts:

1) Detox - I know, not very helpful! Particularly with chronic strep. Any history of strep by any chance?
2) Ammonia (I found one mom whose kid gets nosebleeds & tummy aches whenever ammonia gets high)
3) 3-6 months after starting sulfur based chelation for those who are CBS+ (apparently red blood cells take 130 days to turn over, so sometimes reactions here can take a while to show up). Yasko doesn't recommend DMSA or other sulfur based chelators for CBS+ kids. With high B6, you can also create a "functional" CBS+ (B6 speeds up that gene). So this might be an actual mechanism for high B6 and chelation eventually causing nosebleeds.... definitely consider reducing the B6

Yasko uses lots of vitamin K to address nosebleeds, fwiw.

So you might be dealing with high ammonia in your kids. Do you have some activated charcoal, can you try a charcoal flush? (1 charcoal, follow an hour later with enough mag to make sure they poop, ideally within 12 hours). Yasko recommends them weekly for kids with the biggest ammonia issues, but it might help you figure out pretty fast if that is what you are dealing with.

The challenge here is that some genetics don't handle too much protein well, you end up with high ammonia. ANd other genetics (pancreatic issues) don't digest protein well. I think those are actually the people who feel best on high protein diets. But then when you add digestive enzymes, and finally start digesting the protein, if you keep eating high protein, you end up with high ammonia (especially if you have genetics that is prone to high ammonia, are taking high B6, or are using sulfur based chelators). Sorry, I didn't have those last two in my mental map until just now!

So maybe try a charcoal flush to lower ammonia, reduce protein intake if it's high, drastically reduce B6, and see if that, combined with the enzymes, help your daughter? If ammonia is the issue, that would explain why the enzymes made her get more tummy aches (better digested protein, more ammonia). But it means B6 and/or chelators is the original push on the ammonia?

(See, ask the right question, and suddenly the dots do connect, maybe!)

[tanyalynn]

Can I get activated charcoal at a drugstore? I've never used it--does it come in capsules, or as a powder, or are there different forms of packaging?

I've had strep once or twice but it seems like I should see other signs if this is an issue for her, right? She gets sick some (non-zero) but not crazy often or crazy intense... And I didn't notice a change in my health any time after I had strep--could've missed it, I admit, but nothing blatant stands out.

DH's family tends to crave meat, first-pass guess would be an inherent tendency toward pancreatic issues (but we know how great I've been guessing lately, esp with DH's side of the family)... ok, so potentially I've created this by "being good" about our supps, mainly the B-complex, now that I started the digestive enzymes--at just the wrong time.

I've not given her much DMSA, and I've only done a couple rounds this year at all, so I don't think it's sulfur from the DMSA. I think I do best with high sulfur foods, I'm assuming DMSA would work well for me in that sense, but DD could be a completely different story.

What to do about DH is an interesting issue. Doing lower protein for DD could work... she tends to self-regulate food choices the best among all of us, and starchy foods are easy, need to work a bit on fatty while on vacation.

DH--I think he'd be bummed if I wanted to buy a blood glucose monitor for him to use. But I've been thinking paleo-ish for him to lose weight... globs of fat aren't quite as tasty. Will figure that out another day.

And start looking for new, tasty sweet potato recipes, ideally that are good cold/at room temp.

[mamafish9]

Charcoal - yes, I think you can get it at hfs - it's in capsules and cheap.

Your DH may not share all DD's genes here, or it could just be you aren't loading him full of B6 . I know that one Thorne complex has an awful lot of B6, so it might be if you go off that, and do a charcoal flush, you'll reset and not see ammonia that often. DS does really well on sulfur foods as well, we don't see much ammonia from him (yet at least!), but I have the charcoal on hand in case it crops up.

But yeah, encouraging DD to a "middle of the road" diet - some carbs, some fat, some protein seems like a good way to head if she might have any ammonia issues.

So far your DH is doing fine, so he might not have ammonia issues. And you might wait a bit on the paleo-ish - he might lose weight better on the pancreatic enzymes, or find his natural food inclinations change (maybe if you mention it, he'd be more willing to *consider* if something different than normal sounded good?).

File the strep for now - I don't know a lot about it, and it's a hard nut to crack if it is the issue. Kicking out B6 is an easy thing to try, and then we can guess again at that point. I'm having fun playing amateur "Yasko 8 ball for Tanya"

[tanyalynn]

DH isn't getting nearly as much B6, he's only recently re-started a multivit... let me look at it now...

Dang, his multivit has WAY less than DD is getting. So I think his dosage should be fine anyway.

I don't think he wants to think much about what he eats, I don't think he's going to put in a lot of effort while we're gone. I guess I can leave basic recipes for meat, roasted starchy veggies, and roasted green veggies (roasting being pretty easy and tasty) and he'll eat something.

Last fall, we did meat/eggs/veggies/some fruit for a few weeks and he lost weight and felt better, but I have taken note that Shannon said her food preferences changed a lot with the enzymes. Applicable to DH? No idea.

I'm glad you're having fun helping me problem-solve, I really do appreciate the help. And if we end up on a fairly comfortable diet, middle of the road (still w/o gluten and dairy for a while), I could be pretty content. And my Treasure Map has butter and goat cheese on it for us by the end of the year... so that's my plan. Maybe this will help get us there.

[Theloose]

Time for me to jump on the drop the b6 bandwagon too?

My food preferences have changed in that I no longer crave a boatload of butter with every meal, and REALLY want more veggies. The veggie thing was starting before the enzymes, though. I'm starting to slow down a bit on the meat, too. So some significant stuff, but nothing drastic. For vites, I've been too chicken to actually cut them back just yet. I don't know how much is draining to the nursing ones, and the consequences of dropping too low are just too much right now. But those couple of days when I ran out were promising!

[tanyalynn]

So by the time we're all done with all of this, and we aren't experimenting on our families anymore, we'll have this huge treasure trove of information gathered at MDC, right? I am so not up for organizing right now, but at some point, I'd like to work on that. We've talked about it a few times, I don't think anyone's got the extra bandwidth right now for it, but someday maybe?

I feel like I'm going to know a little bit about everything by the time this is done.

[mamafish9]

How much B6 are you taking, Shannon? If it upregulates your CBS699 even more, then you might have a fair amount to gain by decreasing it... Like I say, DS is down to ... 3.5mg/day of b6, he was on that + 15mg/day of P5P (which I think is about 5x to get to B6, so 75mg b6 or so).

[Theloose]

That was kind of my intention with detoxpuzzle - collect and organize notes over there so they're easy to access. Definitely don't have the bandwidth for that lately!

Speaking of organization, gonna go talk about me in my own thread :P

[mamafish9]

Originally Posted by whoMe

T was kind of my intention with detoxpuzzle - collect and organize notes over there so they're easy to access. Definitely don't have the bandwidth for that lately!

Speaking of organization, gonna go talk about me in my own thread :P

Organization is good - I just have no brainpower. I analyze data for a living, so digging and threading stuff together works for me, along with the smart brains and trains of thought I can access here. But yeah, not so user friendly for everyone else...

[tanyalynn]

Originally Posted by whoMe

That was kind of my intention with detoxpuzzle - collect and organize notes over there so they're easy to access. Definitely don't have the bandwidth for that lately!

Speaking of organization, gonna go talk about me in my own thread :P

That's sort of what I was thinking, but I didn't want to put all the responsibility on your shoulders. Didn't want to assume you were just "done for a while" vs "done forever, not wanting to get back to it."

And heck, the thing's going to get BIG fast, just trying to make a reasonable tree for immediate problem-solving and then underlying issues. But not for today. Today my plan is to solve the car trip - organization problem (books/toys falling to the floor) and then bake some stuff, and go buy maze books and some other stuff the kids will enjoy in the car. And go buy potatoes to make a huge amount of potato salad. And some cleaning. And there's plenty of other stuff I could/should throw in.

[Theloose]

Eah. My today list isn't that long, but as soon as dd sees me on the computer these days, it's instant boredom on her part, and only milk will suffice. Nevermind that ds is most likely nursing in my lap. Sigh. Maybe I should stop trying to keep it pretty and readable, and just go for getting info up and readable? Just have it in one spot, then a link to the thread for now...