Mendability

[nature girl]

How much D would you give? I take 1000mg myself, does that seem like too much for a younger kid? (She's 8.)

[PeterPan]

Well have you had labs done to see how your levels are? 1,000 is a very low dose. I started my ds out low and worked up. I stopped when I hit a dose that seemed to make him more stable and cheerful with no negative side effects. This is really your own deal though, sorting through this. I can tell you I have my ds on 4k IU a day. I don't have labs and I can't say that's a correct or good dose for your dc. I haven't paid for labs for my ds, so I just started low and worked up. It was a pretty noticeable improvement on him, a stabilizing effect. Also I add in K2, because the gut is supposed to make K2 to help the D be absorbed better. I don't use anything expensive or swanky, just a boring K2 product. There are different kinds, and I just use a normal one, not the fancy stuff. His sensory got better as we added in the K2. Not like crazy better, but just easier to touch him better, a percentage. You can find D vitamins that have the K2 already added. I buy it that way for my dd so she doesn't have to keep track of as much. I buy them separately for my ds to save money.

[PeterPan]

2 hours ago, nature girl said:

 

She gets upset with me and my husband (mostly my husband) VERY easily, when things don't go her way. Recently there's been some aggression too...not major, but some hitting that seemed to come out of the blue as a result of frustration. The other day I asked her to explain a math problem and she got FURIOUS at me, yelling and then crying, and it was really hard to calm her. (She understood the problem completely, just didn't want to explain.) This was an issue with hs'ing too, if she couldn't find an answer. She just explodes really easily into frustration and anger.

I'm just rereading this and chewing on it. So when she's on the meds her frustration tolerance improves, but as the meds wear off and on the weekends these behaviors come out? That's a lotta volatility.

It's going to take you some trial and error to get this figured out I think. 

[nature girl]

So I'm doing a lot of reading, and trying to put this all together...It looks like with her COMT SNPs, she probably has high dopamine (which explains many of her symptoms.) So why do stimulants affect her in such a powerful way? She probably also has high norepinephrine, which may be why Vyvanse made her more irritable (although it was mainly an issue when it wore off.)

I'm also trying to understand how this all plays into epigenetics...Just because she has these SNPs doesn't necessarily mean she's doomed to express them, right? So if we can turn them off through diet, exercise and sleep (and addressing inflammation in the gut?) then they shouldn't be as much of an issue? 

Also trying to understand whether her birth-mother's drug/alcohol/nicotine use may have played in, and will make things harder. I guess prenatal exposure affects epigenetics? Does that make it harder to switch these genes off?

This is all pretty overwhelming, the more I read the more I realize what a tough hand she's been dealt...

[PeterPan]

I don't think you can assume hormone levels based on a gene. That's a generalization from one gene, when those levels are part of a cycle. Stress will exacerbate underlying genetic weaknesses and propensities. Like if her levels of xyz are 30-40% of what they should be, that still might be adequate when not stressed. But then you up the stress (work, academics, death of a relative, whatever) and things will come out. So it could look like cycling when, as you're seeing, it's the genetics showing up.

The genes might explain why her birth mother struggled so much with the addictions, sigh. 

I don't buy a lot into all the theories I see floating around right now about epigenetics. Good eating is always good eating, working on the gut is always good. But to say you turned on/off something, that's really just conjecture. Of course you should feed her well and get her exercise and sleep. 

Yes, the fetal exposures would make it harder.

My advice is go concrete. Vague won't get you anywhere. Like if your goal is "eat better" that's really vague, kwim? But if you say you want to increase her vege consumption by 1 cup a day because it supports her mitochondria and gives her more stable energy, that's concrete. Checking her D and getting her on that is really concrete. Supporting her methylation cycle is concrete.

I don't have a concrete answer on why she's more irritable with the rebound. It's the rebound, so it's normal. Her levels are dropping down and she doesn't have the self-regulation to control it. Two people can feel the same things but what they do with it depend on their maturity. The main thing to take from her genes is she's dealing with a significant mix that is making her body feel lots of intense things. The behaviors are communicating that she's maxed out with what she can regulate. You're not going to get the behaviors to go away completely with supplements, but you do want to see how much you can get her body within her realm of ability to control. I also would suggest that it's unwise at this point to write off anything as mild. I assumed she was bio. Since she's not, I'll just tell you that people I know who have these genes have pretty intense things they're feeling. Just because she's not putting them into words doesn't mean they aren't intense or significant. That TPH2 gene, for instance, being homozygous defective, is pretty significant. You won't know how much she's tamping down with her positive efforts until you bring in supports, kwim? Adults I know with this have clinical, diagnosable depression, even when there's nothing in their lives that they're depressed about. It's that significant.

Keep reading and thinking. I'm just cynical on anything vague because I've been dealing with health stuff for 20 years. So me, I'm looking for really targeted, fixable things. Like the D, if it's low, raise it. But just to say well eat better and she'll feel better, sure sorta in a general way. But you'll still be dealing with low D, low Bs, low 5HTP. And probably it's all gonna hit the fan in puberty, with all the shifts. It will be harder for her to mask and the stresses will go up. I'm approaching 10 with my ds, and I can tell you that range (10-14, hormone changes) are what our providers are all watching. Anything he could cover before is gonna hit the fan and be all the harder. I wish I had had access years ago to what you have now. 

It's ok to grieve. Grieve, wrap your brain around it, and then move on to a really concrete action plan. 

[nature girl]

Thanks so much for your help...a lot to think about. (My understanding was that depression is low dopamine, so wouldn't the fact she's probably high dopamine due to her COMT counteract that?)

Moro integration is supposed to help address anxiety, so we'll keep working on that.

I'm starting with a low-ish dose D, and in July we'll test her D, her Bs, and I read something on Yasko that said lithium should be checked before adding B, so I'll try to have that tested too...although I'm not sure how much her ped will be willing to prescribe. I think I might need to find a good naturopath (hard because resources in our area are so limited.) Everything I'm reading about heterozygous compound MTHFR and her COMT issues suggests it will all be really, really hard to balance. ?

[PeterPan]

Option one, go ahead and start her on a low dose of the methyl B and B12 and then test the lithium if she seems unstable. Option two, go ahead and test the lithium, Bs, etc. You can do it without a doc scrip at healthcheckusa.com I think it's probably *less common* to need to add the lithium. I can't guarantee that. Lithium tanks thyroid really quickly, so it's not the kind of thing that you just kind of add for good measure, yasko's exuberance about it notwithstanding. 

I think you're probably going to want to add some more things before July, but starting with D is a good plan. I give my ds 4,000 IU a day. Is she taking a calcium daily? Calcium and magnesium are really helpful for stability. Like they help you grow, but they're also the transporters for a lot of stuff, keeping things stable. 1500 mg a day is normal for calcium for this age. My ds doesn't drink milk, so I have him on capsules now that he can swallow them. Before we used a liquid and had compliance issues. Ironically, that liquid calcium had D, and we weren't figuring out the pattern that the days he got it his behavior was better, sigh. As soon as I saw the genetics it was a total lightbulb moment. You can also get D as chews, etc. 

Yeah, just start somewhere, take a few steps, see what happens. Just my two cents, doing this with my kids and a friend, is to suggest that you get her methyl levels up enough that she is irritable (ie has some flex) before you do anything that wickedly drops them. Like you might even find the D drops her methyls enough that she's feeling it and a bit more tired and cranky. I don't know what will happen. I'm just saying I've watched my dd adding this stuff, and for her the D was good but made her a bit more tired and cranky from dropping the methyls. So then we started adding in the methyl folate and a methyl B12 and she's looking better. Like a teeter totter. 

Your theory on the anxiety is interesting. I guess just watch it. In reality, that's going to be the hardest piece to get up, the 5HTP, and when you get it up it's the most WOW. 

We had a link geodob posted a while back on l-tyrosine and 5HTP. What I don't know is what effect the ADHD stimulant meds have on that balance as you add 5HTP. Don't know. There are studies saying 5HTP + l-tyrosine, for a population, is as effective (statistically) as vyvanse. Crazy. 

[nature girl]

So going back to this, hoping for guidance from you well-informed mamas...I got my daughter's blood tests back recently, and everything was completely in range, all B's and D, and her homocysteine is normal. Does this mean her mutations aren't expressing? Can I just breathe a sigh of relief and move on? Or do the mutations mean there's a chance her body may not be able to utilize the folate, etc. that is in her blood at normal levels?

[PeterPan]

Sorry, what do Bs and Ds mean on blood labs? I think the homocysteine being good just means your current mix is working for letting her absorb b12, yes? 

I've forgotten exactly, but didn't your dd have the contradictory mutations, like MTHFR *and* COMT? When you look at the Yasko recommendations, those cancel out and basically the people just take the non-methylated forms, meaning that yes she could have normal levels just from normal healthy diet exposures, sure.

Ok, Ok, I'm have a duh moment. You mean her vitamin D levels are good? Well that's GOOD! Doing labs and finding things are good is GOOD! So just figure out what she her current sources are and keep track, kwim? Like if she drinks a vitamin D fortified milk in a certain amount daily and a multi-vitamin that has x amount, then you know that, for right now, that dosage is keeping her labs good. So then if she changed from drinking that fortified milk and having that multi-vitamin, then you might re-examine. And if she has a growth spurt in a few years and has symptoms, you could update the labs just to keep tabs. My ds stopped drinking a fortified milk, so we give him a supplement. I would just tally up major sources like that.

I don't know, some people don't like getting no answers on tests, and me I'm like sure, bring it on! Hearing something is not a problem is a GOOD thing, because you've got plenty of other things still to deal with! The point was to eliminate things and know you've dealt adequately with stuff, and you have so there, boom. It seems good to me. (says the woman with a bandaid on her hand from her own labs today, hehe)

Edited September 6, 2018 by PeterPan

[nature girl]

17 minutes ago, PeterPan said:

Sorry, what do Bs and Ds mean on blood labs? I think the homocysteine being good just means your current mix is working for letting her absorb b12, yes? 

I've forgotten exactly, but didn't your dd have the contradictory mutations, like MTHFR *and* COMT? When you look at the Yasko recommendations, those cancel out and basically the people just take the non-methylated forms, meaning that yes she could have normal levels just from normal healthy diet exposures, sure.

Ok, Ok, I'm have a duh moment. You mean her vitamin D levels are good? Well that's GOOD! Doing labs and finding things are good is GOOD! So just figure out what she her current sources are and keep track, kwim? Like if she drinks a vitamin D fortified milk in a certain amount daily and a multi-vitamin that has x amount, then you know that, for right now, that dosage is keeping her labs good. So then if she changed from drinking that fortified milk and having that multi-vitamin, then you might re-examine. And if she has a growth spurt in a few years and has symptoms, you could update the labs just to keep tabs. My ds stopped drinking a fortified milk, so we give him a supplement. I would just tally up major sources like that.

I don't know, some people don't like getting no answers on tests, and me I'm like sure, bring it on! Hearing something is not a problem is a GOOD thing, because you've got plenty of other things still to deal with! The point was to eliminate things and know you've dealt adequately with stuff, and you have so there, boom. It seems good to me. (says the woman with a bandaid on her hand from her own labs today, hehe)

 

Thanks! (Good luck on your labs!) And sorry I wasn't clear. Yes, they tested all her B's, D and ferritin, and all were normal. She is COMT++, but my understanding (I may very well be wrong!) was that this only means we'd have to be careful which version of folate we supplemented with, not that it would counteract the MTHFR mutations.

She actually doesn't take a multi, or any other supplements. But she eats a healthy diet, with lots of veggies including dark leafy greens. She doesn't eat red meat, though, and rarely has eggs, so I was surprised her B12 was as good as it was. And she has a VDR Taq mutation, but her D was completely normal as well even without supplementation (and despite the fact she's always wearing sunscreen outside.) She also doesn't drink cow's milk, so doesn't get D from there.

So...I don't know, it seems like the genes aren't expressing? I've read some of Dirty Genes, and heard Ben Lynch speak, and his view is that as long as you keep a healthy diet and reduce stress, sleep well, don't drink too much alcohol, etc., you don't need to worry about supplementation.

I'm relieved we don't need to worry about supplementing, but on the other hand I was almost hoping for an answer to why we're seeing the problems we see. It may be related to her COMT mutation (although that's SO common), or some other SNPs that I haven't been focusing on. But yeah, it looks like we're not going to be able to fix anything by supplementing. (I should say, I've started her on the Nemechek Protocol, just because all the components are harmless/healthy so it seems like it won't hurt to try it. We only started recently, so the jury's still out. But who knows, supposedly that's supposed to affect epigenetics as well.)

[PeterPan]

I tend to be kind of a simple thinker, so the way I think of it is that the MTHFR defect means she needs methyls, but the COMT defect means she's not going to tolerate well when you add more. So if you do something that tanks her methyls (like a lot of spinach, a lot of anything that drops methyls) her methyls will drop low because she actually has a tendency to drop. But the other defects mean her things that slurp up and use the methyls are also low and that she might not tolerate well adding them. So with a person like that, they might tolerate a *fuzz* of methyls, but too much and boom you get symptoms. Depends on the mix, but in the people I know, that's how it shows. 

So like me, I turned out to have an MTHFR defect, which I was not expecting, and the COMT and VDR defects we were expecting. So when I eat a ton of spinach or take b-complex supplements that are too high, I get tired. That's the propensity to low methyls showing up. Drop those levels and I don't recover well and I feel it. But the other genes mean my tendency is to have too high methyls or that I'm very sensitive when I get them. So if I drink something with caffeine (methyl donor), I have to be pretty cognizant of what is happening.

Yeah, I've read the claim about the dirty genes. I think there's a lot of hooey out there. I don't know how much is hooey, but I think labs are tricky anyway to conclude from. Think about it. Where is she within the normal range? You'll have people find their symptoms improve when they're at a certain place in the normal range. So just to say oh she's at x in the normal range, I don't know. Some people feel better when they're at a certain place, and she's too young to say.

Does she drink an alternative milk like almond or soy or coconut or something? Those products are often fortified, even things like tofu. Is she taking a calcium pill daily? It may have D. Just for your own info, you might want to look through her day and see. 

I don't think the genetic mutations are considered an entire, 100%, not gonna make ANYTHING shutdown. They're a percentage. When we talk about these genes, we're actually just looking at one SNP, which is one set of alleles, one pair of chromosomes on the gene. 

[PeterPan]

I'm not up on the Nemechek Protocol. What are you hoping it will do for you?

I'll say this again, but I'm really not of the camp that a no answer is a failure. It's more like ok, we eliminated that as part of the explanation. That's the goal. At some point you'll eliminate enough things and it will have been long enough since her last evals that you may update evals. She is adopted and had fetal exposures, yes? So there might be things that fresh psych evals with a couple more years on her, when she's now 7 or 8, could start to show more. Maybe you find someone who is an expert in whatever she was exposed to or get in support groups for that. 

I know someone who had that situation (adopted dc with fetal exposures), and some of the final diagnoses weren't gotten until their teen years. For real. Some things just become more obvious with time. 

Edited September 6, 2018 by PeterPan