Guess your genetics (Yasko related...) - Page 7 - Mothering Forums

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Old 06-23-2010, 08:35 AM
 
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No. Either she's COMT++ (or maybe COMT+-), or she really needs B12 and so getting any causes sharp reactions. I figured DS would be COMT++ because 1/2 a methyl B12 tab could make him crazy. But now that I am supporting his methylation properly for his genetics, he gets quite a few methyl groups (he is COMT+-), and does fine with them.

How much B12 did you give her at once, and what reaction did she have?
She was getting 1 mg sublingual for a few weeks. Became wildly impulsive and screamed a lot. I think she may react to folate and/or B6 as well - I was giving her a sprinkle of each last week and seems like the screaming increased again. I'm not certain so I'll probably try those again soon.
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Old 06-23-2010, 02:48 PM - Thread Starter
 
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Deb- what zinc do you use? I need to find some for DD. We had a massive beet pee fail a few days ago- she had pink pee for an entire day after eating beets. I had NO pink pee, and coincidentally had just taken a high dose (100mg!) zinc that day because I felt a cold coming on.
I use the Thorne trace minerals (1/2 cap a day), which has zinc and other stuff in it. I add the plain Thorne zinc picolinate if I need more. Oh, and Yasko's Optizinc (it has methionine in it too, which DS was low in).

Given how much lamb you eat, which is high in zinc, I'd take that as a sign she's maybe not digesting protein well. So hopefully the pancreatic glandular makes a difference.

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She was getting 1 mg sublingual for a few weeks. Became wildly impulsive and screamed a lot. I think she may react to folate and/or B6 as well - I was giving her a sprinkle of each last week and seems like the screaming increased again. I'm not certain so I'll probably try those again soon.
Try hydroxy B12 then - if you get the same reaction, you'll know it's the B12, but it could well be the methyl groups. Mthf folate is a methyl donor as well, but that shouldn't have been an issue in small doses. It could be though, that all those supps are causing small amounts of detox, which raises glutamate levels - so good calming supps help - mag, gaba, grapeseed extract (not grapefruit seed).

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Old 06-23-2010, 03:19 PM
 
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Try hydroxy B12 then - if you get the same reaction, you'll know it's the B12, but it could well be the methyl groups. Mthf folate is a methyl donor as well, but that shouldn't have been an issue in small doses. It could be though, that all those supps are causing small amounts of detox, which raises glutamate levels - so good calming supps help - mag, gaba, grapeseed extract (not grapefruit seed).
I didn't realize that mthf folate was a methyl donor. Maybe that is why the pendulum says yes to soooo much. I don't give as much as suggested. I wonder if I up B12 and other methly supps, if the folate requests go down.

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Old 06-25-2010, 03:32 PM - Thread Starter
 
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ARGH. Yasko's office isn't willing to release info about the SNPs that don't have standard names, says they are "proprietary".

Anyhow, found this:

ACAT 1 G
AHCY 1 A
AHCY 2 T
AHCY 19 A
BHMT 1 A
BHMT 2 C
BHMT 4 A
BHMT 8 C (mutation is T)
MTHFR 3 C
MTRR 4 T
MTRR 6 G
MTRR 11 G
SHMT G

Those are the call letters for --, anything else would be +. I'm not sure what all the mutations are, DS' test only says his call letter if is is ++ for the mutation, not when he is +-. (I've put one mutation I know about in brackets above). Hopefully as more of you have tests done, we will be able to work out the -- and ++ call letters for these, and then map them to 23andme with more assurance.

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Old 06-25-2010, 04:17 PM
 
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I didn't realize that mthf folate was a methyl donor. Maybe that is why the pendulum says yes to soooo much. I don't give as much as suggested. I wonder if I up B12 and other methly supps, if the folate requests go down.
I know you do pendulum testing...how do you do that? I've read other posts of yours in the homeopathy thead about this..very interested in finding out more....PM me if this is not the right place!

If the people let government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls of those who live under tyranny." Thomas Jefferson.

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Old 06-26-2010, 09:49 PM - Thread Starter
 
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Argh. For those of you monitoring blink rates... This will teach me to do my research first!!!

The <15 blinks/min = low dopamine appears to be true for adults. But kids have naturally lower blink rates, that increase with age.

Here's a study looking at blink rates for 4-6 year olds, with a pretty decent sample size. http://www3.interscience.wiley.com/c...3676/HTMLSTART

Their raw data lower down says 12-22 complete blinks in 3 minutes, and 15-18 incomplete blinks. So for my 3 year old DS, their 4yo group is a decent comparison. They averaged 4 complete blinks and 5 incomplete blinks a minute. I've only been counting complete blinks, but DS's data fits in with that group pretty well. Maybe a little low, but not the abysmally low I thought he was, when comparing to 15 as "normal". Or more accurately, he swings between normal for a 3yo and low - but at least he hits normal a fair amount. I bet if I count carefully, I can see the swings and associate them with behaviors, so I can truly figure out his low dopamine signals.

Which is really frustrating, because I've been working really hard on dopamine supports for him (low dopamine can matter for language), and I bet he doesn't need them . Or at least not as intensively as I've been assuming.

So sorry for those of you I led astray!! I'd say that "normal" probably looks like 5ish full blinks a minute for 4-6 year olds, and 15 is normal for adults (or anyone else over 14). Kids 6-14 should be more than 5, but not up to 15. DD is at 8, and she's 7.

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Old 06-26-2010, 10:05 PM
 
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Wow, bummer about the blink rates. But at least you figured it out.


So I gave DD a few sprinkles of enzymes this week. Maybe 3. Besides her epic meltdown she also developed a rash on her inner thighs. Do you think 3 sprinkles of enzymes could cause this?

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Old 06-26-2010, 10:29 PM
 
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Do you think 3 sprinkles of enzymes could cause this?
Yes. Enzymes are crazy. One enzyme pill had me writhing on the floor in pain 10 minutes after taking it, so I can imagine that even a sprinkle in a smaller person could have major effects.

That's good to know Deb. At least DD seems normal (in that regard), although DP was still crazy low.

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Old 06-26-2010, 11:36 PM
 
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Wow, bummer about the blink rates. But at least you figured it out.


So I gave DD a few sprinkles of enzymes this week. Maybe 3. Besides her epic meltdown she also developed a rash on her inner thighs. Do you think 3 sprinkles of enzymes could cause this?
Yeah for sure! I had pretty strong reactions to anything that influences the gut flora - probiotics, enzymes, hcl. So does dd.

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Old 06-27-2010, 12:29 AM - Thread Starter
 
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chlobo, could - did that start prior to the swedish fish though? If not, I'd blame the fish. But yeah, 3 sprinkles is plenty to cause reaction if they're sensitive. Ask me what happened when I gave DS a sprinkle of dopamine (holy hell and don't try it!!!!).

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Old 06-27-2010, 02:45 AM
 
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I want to know what happened! What does crazy high dopamine look like?

And (I haven't looked at the study) is there a high range for kids? Dd is at 12ish, and dh is at 40-50ish. No clue about myself.

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Old 06-27-2010, 09:49 AM
 
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Last week during the week I gave her 3 sprinkles. She had what I thought were bug bites during the week. Then on Friday she had the swedish fish and friday night she had a much larger area of bug bites, which we now think is rash. So perhaps there's a lot at play here.

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Old 06-27-2010, 02:11 PM - Thread Starter
 
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I want to know what happened! What does crazy high dopamine look like?

And (I haven't looked at the study) is there a high range for kids? Dd is at 12ish, and dh is at 40-50ish. No clue about myself.
He beat me up as I tried to put him to bed. Like seriously violent. And then he repeated the process every time he woke up at night. His sleep was awful - waking a lot, really restless, wiggling everywhere. At one point while I was putting him to bed, he had 2 minutes or so of crazy blinking - like 40/min, then back to his regular 5, but the symptoms went on all night.

The study doesn't give a high range (or standard deviations), and unfortunately, it's the only relevant study I can find. But 12 sounds high for your DD's age, and 40 is definitely high. COMT++ tend towards high dopamine (so long as there are no underlying BH4 issues to compensate the other direction) - and high dopamine often results in dopamine swings - so very moody.

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Last week during the week I gave her 3 sprinkles. She had what I thought were bug bites during the week. Then on Friday she had the swedish fish and friday night she had a much larger area of bug bites, which we now think is rash. So perhaps there's a lot at play here.
Hmm. Don't you love lack of clarity . The enzymes may have triggered a response, and the swedish fish just generally gave that a shove. Or she could be having a minor reaction to an ingredient in the enzymes. But for now, I'd just keep going with the enzymes and watch.

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Old 06-27-2010, 03:31 PM
 
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old dopamine thread:
http://www.mothering.com/discussions....php?t=1045474

and for adults dtd, dopamine and prolactin oppose each other and interplay a lot wrt motivation/desire (dopamine) and satisfaction (prolactin).

Another dopamine clue is cherry angiomas (tiny bright red mole looking things) - they can be due to high prolactin, which would likely be low dopamine. I've got a few, and more have popped up with each baby.

And along the prolactin lines, I'm wondering if tendency towards over or undersupply correlates with dopamine levels, too.

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Old 06-27-2010, 03:39 PM
 
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I'm lurking and hoping I don't forget all the places I want to read more, since I don't have time today.

Over/under supply as related to dopamine would be interesting. I didn't have as much over/under-supply as I could've, I don't think, and I think I'm pretty ok on dopamine. I've been depressed in the past and SSRIs worked quite well, whereas I'm thinking some of the depressed people who don't respond well (or only partially respond) to SSRIs also have dopamine issues.

Need to figure out the blink rate thing more, DD's blink rate went up quite a bit when I started the digestive enzymes for her, but I'm not sure where it will level off (and I've been sporadic about the digestive enzymes since we've been here, probably be better in WA). Hmm...

Deb, thanks for the discussion of neurotransmitters, I bet there's still something a bit off, sometimes, in both kids--sometimes they are just cooperative and independent (in a good way) and parenting is easy, and then sometimes, not so much (separate from normal lack-of-sleep issues, and stuff like that).

Ok, will watch DS's blinks after we've been in WA for, say, a week, see where both kids level off. But heck, if the stomach aches really are gone, then I've made good progress on my summer goals.
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Old 06-28-2010, 02:40 PM
 
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So I've been slacking on enzymes lately

I re-started yesterday with DD she was fine all day but night time was hell!!! She went to sleep quickly but woke about 2am being very restless and wanting to snuggle. By the time 3:45 came around she still wasn't asleep so I got pretty stern with her then she turned into a crazy child!!!! Kicking, screaming and crying like I've never seen her before. I held her she fell asleep within seconds then was up again at 4:45 wanting to snuggle I got mad(bad sleep deprived mom)she turned crazy again then fell asleep within seconds of huge tantrum. Woke up at 5:30 tossed and turned then slept till 9:15 uhhhh what a night!!!! So is this enzymes you think????

The only thing different she ate was a gluten free brownie I made but she usually handles chocolate fine.
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Old 06-28-2010, 03:38 PM
 
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Pancreas and enzymes thread
http://www.mothering.com/discussions...2#post15567542

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Old 06-28-2010, 03:55 PM - Thread Starter
 
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If you've been slacking, what dose did you start her up on yesterday? Could be enzymes, or could be that the enzymes helped digest the brownie better, so she got the full effects of the chocolate and caffeine, and that's never happened before... (chocolate makes my DS nuts, fwiw - totally the nighttime behavior you're describing).

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Old 06-28-2010, 04:04 PM
 
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If you've been slacking, what dose did you start her up on yesterday? Could be enzymes, or could be that the enzymes helped digest the brownie better, so she got the full effects of the chocolate and caffeine, and that's never happened before... (chocolate makes my DS nuts, fwiw - totally the nighttime behavior you're describing).
I gave her a small dose sprinkled on food and she didn't finish her food so she didn't finish all the enzyme. I didn't even think of her digesting the brownie better! I guess brownie a hour before bed wasn't the smartest move
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Old 06-28-2010, 05:05 PM - Thread Starter
 
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I guess brownie a hour before bed wasn't the smartest move
Sounds yummy to me ... But yeah, could have been the brownie.

Try the enzymes again, but maybe on breakfast/lunch, so if you get a reaction it doesn't impact sleep as much. Or brownie for breakfast .

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Old 06-28-2010, 06:33 PM
 
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Sounds yummy to me ... But yeah, could have been the brownie.

Try the enzymes again, but maybe on breakfast/lunch, so if you get a reaction it doesn't impact sleep as much. Or brownie for breakfast .
They are yummy. DH had to have dessert last night so I didn't want DD to feel deprived so I made something she could eat. We did the enzymes today at lunch she's been a little cranky but also had a rough night so maybe not enzymes.

Would the caffeine in choc really keep her up all night tho???
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Old 06-28-2010, 07:16 PM - Thread Starter
 
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They are yummy. DH had to have dessert last night so I didn't want DD to feel deprived so I made something she could eat. We did the enzymes today at lunch she's been a little cranky but also had a rough night so maybe not enzymes.

Would the caffeine in choc really keep her up all night tho???
Yes . The chocolate might not be the culprit, but it certainly *could* be. When I was nursing, eating a bite or two of brownie caused 2-3 sleepless nights for my son. It was not worth it, and I love chocolate!

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Old 06-29-2010, 07:33 AM
 
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Guessing at diagnostics - for those of you with signs of poor methylation function (seasonal allergies, histamine reactions, get sick a lot), where folate doesn't have a big bang impact (or not enough), try a significant increase in your B12.

So, as far as signs of poor methylation function, DS2 has histamine reactions, I am assuming, since he has a peanut allergy, and he had several viral rashes when he was little, but he doesn't have seasonal allergies, and he doesn't get sick a lot. He seems to come through viruses quicker also. So, does he still have poor methylation function?

As for folate, is the amount in the GI Pro Child enough folate, or might we need more? DS1 is 75 pounds and DS2 is about 43 pounds.

It's got 400 mcg of Folate (50% as folinic acid and 50% as L-5-methyltetrahydrofolate):

http://www.giprohealth.com/GIProChild.aspx

And finally, how do we know what kind of B12 we need?

Thank you, thank you, thank you, for sharing all of this.
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Old 06-29-2010, 01:37 PM - Thread Starter
 
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That doesn't sound like you need methyl groups, but could still mean needing methylation support. So use hydroxy B12, not methyl B12, as the primary form of B12. And yes, that's plenty of folate, in the right forms (I like that vitamin, it's what I use for DD).

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Old 06-29-2010, 05:41 PM
 
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http://www.drneubrander.com/Files/Me...%20Miracle.doc

I just read this and found it raised many questions for me. Particularly these parts: it's long but very interesting.

Quote:
.... Therefore the popularity of hydroxcobalamin that is presently occurring seems to be missing two important facts. One is that the entry of B12 into the homocysteine pathway is from methyl-B12 coenzyme, not from any other form of B12. The second is that clinically I had been using hydroxycobalamin injections in children with autism for years with some benefit but no marked or incredible symptom improvements.
Quote:
Myth: The MTHFR Enzyme Mutation Test And The Genomics Test Indicate Which Child Needs Methyl-B12 And Which Child Does Not Need Methyl-B12.
Unfortunately there is no test at this time that will predict which child will and which child will not benefit from methyl-B1

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11.Folinic acid should be added after the first 5-week clinical trial but not at the same time as methyl-B12.
hmmmm food for thought?

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Old 06-30-2010, 12:17 AM
 
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I wonder why that is, why folinic acid should not be added at the same time as methyl B12? Is it so that you aren't confused about what is which effect? Are they just saying, start them at different times so that you know? Or is there something about the way the body responds to both?
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Old 06-30-2010, 12:39 AM
 
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My guess is that it's too powerful of a jumpstart of the methyl cycle. B12 stores, and folate doesn't. If you have lots of folate when you introduce b12, then you're going to get blasted with detoxing junk. If your folate levels are low, then you can get b12 levels reasonable and ramp up the detox. Ellasmama was getting bad b12 reactions and that's what I think was going on with her.

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Old 06-30-2010, 12:42 AM - Thread Starter
 
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Dr. Neubrander has a big rep in autism circles, and not all good. My objection to his approach is that he believes pretty much all ASD kids should be getting methyl B12 shots, and that his parent reports "prove" it works. The problem is, you need to work through the "tolerable side effects" - which based on what I've heard, are often months of hell. And to me, it's not surprising that the parents who stick that out believe they see improvements in their kids. But there are no "objective" measures showing anything close to 94% of kids improve.

Based on genetics, most ASD kids will benefit from B12. About 1/4 will benefit hugely from methyl B12, half will benefit but experience stronger side effects (they can't cope with the methyls as well), and about 1/4 will flip out because they can't handle the methyls at all. And to push those parents and kids through months of hell doesn't make any sense to me at all.

I have one of the kids that would flip out. My son handles some methyls - he would be OK with 1-2mg of methyl B12 a day. Because of some genetic mutations he has, he falls into the group that needs 10+mg of B12 a day. If he got all that as methyl B12.... OMG. I can tell you that the few times he has had too many methyl groups, he has spent the entire day and night running up and down the halls and whacking on things. I'm sure that if we did that to him for long enough, his body would eventually adjust - but there's no need.

To the specific issues you quote - yes, methyl B12 is the final form used in the body. But for kids with excess methyl groups, adding a methyl group to B12 is easy (and is a frequent and natural reaction in the body, we naturally recycle B12 all the time and stick a methyl group back on it). They need the B12, but only some kids need the methyl groups.

Adding folinic - he just tries to add only one thing so he gets clean data about the impact of the methyl B12. My personal opinion is that the first methylation supports you add will have the most profound effect, just because they are first. The first pancreatic supports we added for my son had incredible effects, the next two were helpful but far less spectacular. I don't think the first support was necessarily better than the others, it just got the best chance to show improvement. Same with methylation - B12 helps, sometimes methyl groups helps, folate helps (mthf folate is a methyl donor as well). Often the first supp people add gets the most results - but that is true no matter what they added first.

I think for you, you have a reason to be in a hurry, so adding B12 and folate together is fine - there's no biochemical reason not to (and I think supporting the whole methylation pathway together makes sense).

While I think methyl B12 can be helpful for many, what I don't like about this doc is that he slams all other approaches as myths, and presents his one-size-fits-all approach as fact, when there is no external (e.g. unbiased) evidence to support his protocol. And given what I read in autism forums online, a lot of kids that suffer from his approach, that don't seem to be reflected in his numbers.

What I think his data really says is that over 6 months, most ASD kids, just like every other child, will show some growth in their social, emotional, and physical capabilities. Methyl B12 helps some of them. But having an autistic child is a really challenging process of being bombarded by people claiming they can cure your child, and everyone else's approach is wrong. I've gotten extremely skeptical if anyone taking that tone. (You probably can't tell, but most of these "myths" are taking direct aim at some other autism doc's protocol, it's very pointed).

OK, end of rant

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Old 06-30-2010, 01:46 PM
 
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Originally Posted by mamafish9 View Post
Dr. Neubrander has a big rep in autism circles, and not all good. My objection to his approach is that he believes pretty much all ASD kids should be getting methyl B12 shots, and that his parent reports "prove" it works. The problem is, you need to work through the "tolerable side effects" - which based on what I've heard, are often months of hell. And to me, it's not surprising that the parents who stick that out believe they see improvements in their kids. But there are no "objective" measures showing anything close to 94% of kids improve.

Based on genetics, most ASD kids will benefit from B12. About 1/4 will benefit hugely from methyl B12, half will benefit but experience stronger side effects (they can't cope with the methyls as well), and about 1/4 will flip out because they can't handle the methyls at all. And to push those parents and kids through months of hell doesn't make any sense to me at all.

I have one of the kids that would flip out. My son handles some methyls - he would be OK with 1-2mg of methyl B12 a day. Because of some genetic mutations he has, he falls into the group that needs 10+mg of B12 a day. If he got all that as methyl B12.... OMG. I can tell you that the few times he has had too many methyl groups, he has spent the entire day and night running up and down the halls and whacking on things. I'm sure that if we did that to him for long enough, his body would eventually adjust - but there's no need.

To the specific issues you quote - yes, methyl B12 is the final form used in the body. But for kids with excess methyl groups, adding a methyl group to B12 is easy (and is a frequent and natural reaction in the body, we naturally recycle B12 all the time and stick a methyl group back on it). They need the B12, but only some kids need the methyl groups.

Adding folinic - he just tries to add only one thing so he gets clean data about the impact of the methyl B12. My personal opinion is that the first methylation supports you add will have the most profound effect, just because they are first. The first pancreatic supports we added for my son had incredible effects, the next two were helpful but far less spectacular. I don't think the first support was necessarily better than the others, it just got the best chance to show improvement. Same with methylation - B12 helps, sometimes methyl groups helps, folate helps (mthf folate is a methyl donor as well). Often the first supp people add gets the most results - but that is true no matter what they added first.

I think for you, you have a reason to be in a hurry, so adding B12 and folate together is fine - there's no biochemical reason not to (and I think supporting the whole methylation pathway together makes sense).

While I think methyl B12 can be helpful for many, what I don't like about this doc is that he slams all other approaches as myths, and presents his one-size-fits-all approach as fact, when there is no external (e.g. unbiased) evidence to support his protocol. And given what I read in autism forums online, a lot of kids that suffer from his approach, that don't seem to be reflected in his numbers.

What I think his data really says is that over 6 months, most ASD kids, just like every other child, will show some growth in their social, emotional, and physical capabilities. Methyl B12 helps some of them. But having an autistic child is a really challenging process of being bombarded by people claiming they can cure your child, and everyone else's approach is wrong. I've gotten extremely skeptical if anyone taking that tone. (You probably can't tell, but most of these "myths" are taking direct aim at some other autism doc's protocol, it's very pointed).

OK, end of rant
Not having an ASD child, I have never heard of this guy. But I can totally see how a one size approach would not be helpful in ANY situation, let alone a child on the spectrum! I had just found the article when I did a search for hydroxy vs methyl b12. Im just at the point where I'm trying to figure out how these things react in me and DS and how they can all be helpful to our situation. There is so much info and so much to learn for someone like me for whom this is all new teritory....didn't mean to incite a rant ....sorry!!

If the people let government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls of those who live under tyranny." Thomas Jefferson.

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Old 06-30-2010, 01:58 PM - Thread Starter
 
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Originally Posted by Marnica View Post
Not having an ASD child, I have never heard of this guy. But I can totally see how a one size approach would not be helpful in ANY situation, let alone a child on the spectrum! I had just found the article when I did a search for hydroxy vs methyl b12. Im just at the point where I'm trying to figure out how these things react in me and DS and how they can all be helpful to our situation. There is so much info and so much to learn for someone like me for whom this is all new teritory....didn't mean to incite a rant ....sorry!!
Oh, no worries, I rant easily when it comes to people who claim to cure autism and only their approach works . (My son is autistic, in case I haven't said that yet in something you've read!) B12 is something that is used a lot for kids with autism, so much of the knowledge is in that community, but also lots of the misinformation. I don't think ANYTHING has a 94% success rate, and I particularly dislike this doctor using that number to whack anyone else's stuff. I know he's been asked in the past how many people don't finish his protocol (e.g. give up when their child goes nuts on methyl B12), and he's never been willing to answer that question (blames it on parent lack of commitment, rather than his approach not working, and won't give numbers).

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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