Folate-- help!

[BeeRae22]

So, DD (8) has been doing GREAT. Eating (finally!) and behaviors practically gone (with the exception of very, very brief ODD when tires or stressed, and it doesn't last past a quick mean comment or face and then it's over).

 

We went to her PANS doc the other day, and he said to keep everything the same. Right now she is on Zith, Bactrim and Minocycline, and Drainage Tone 3 drops 2x a day, 3 Clak drops 2x a day, and has been on 2 drops a day of super liquid folate. We've talked about MTHFR and "playing around" with the folate drops, and that that would be the only thing I could alter at this point.

 

So, last night I gave her 3 drops.... Holy sudden ODD behaviors this morning batman! :/ Doc told me that this could happen, but hard to believe that one drop could make such a difference?! She hasn't acted like that in weeks and weeks! Actually flicked me in the face because she was losing a card game! Defiant, stomping, mean words, etc.

 

I remember briefly discussing this with her doctor before, and I know it's correlated to the MTHFR gene, can someone (LLM?) give me advice or information on this going forward? (LLM-- I'm not positive, but I actually think it may be you that her doc refers to when taking about possibly connecting me with "a parent that is really involved in this area"?!) what does this mean? I've been tempted to do the 23andme testing but haven't gotten there yet. Honestly, I've been on a break since school let out and behaviors have improved... I feel like I've been through a war these past 9 months.

 

I'm nervous to give her ANY folate right now!! What do I do tonight? G back to 2 drops, just do 1, or none? Should I try this again later for experimental purposes? (I don't want to! but summer is better than during the school year I guess!)

 

Any help, info or suggestions appreciated! Wow, how soon we forget really, how bad those behaviors feel, and how disruptive they are. I hope she doesn't flare in the fall. I honestly don't know if I can go through all of that again

[BeeRae22]

I was told that the behaviors could flare up almost immediately from too much folate (they did!) and then would dissipate just as quickly (hopefully?) when you reduce the drops back down. Anyone have experience with this?

[pr40]

not everyone can take folate as the first thing in attempt to improve methilation. do 23 and me and you'll have a bit better understanding of what you are up against. or you can do yasko's genetic analysis. it is more expensive but it comes with her advice. in my experience, there are very few other people who can advise you on methylation and, given your dd's reaction, you seem to have a complex case requiring the best of experts.

 

At the same time, I want to ask, why did you start her on folate? you describe almost unbelievable improvement, what exactly do you think that folate would add to that?

when there is too much folate, niacin may help.

from what you say in your second message, it seems you do not go low and slow. that is the rule with anything regarding methylation. start with smallest possible doses and when they go well up it slowly if you need to.

[LNN]

If it's the folate that's causing the blip, the good news is that the doc is right - it should calm down within the next few days. Based on my own experience with my DD, I'd not give any folate tomorrow and see how it goes (BTW - what's the form of folate in what you're using - I'm not familiar with this product). If you're still seeing any ODD, stop at the health food store and see if you can find LOW DOSE niacin - as in 25-50mg. Or if you can only find higher doses (e.g. 500mg) get the capsule form and open it up, dumping out 90% of the capsule so you can give an estimated 50mg. It can be either flush or non-flush form of niacin, tho I prefer the kind that creates a flush because the flush is from capillaries opening up and there's a small chance this helps with detox a bit. But either form will help someone who's suffering from an overdose of methyl groups.

 

If she calms down, then either skip Monday, or give one drop. Depending on what you see, slowly build back up to 2 drops and stay there - or try giving one drop every other day and 2 drops on the other days. You may find that she does better on something a little less than 2 drops/day, since you were still seeing slight ODD on that dose.

 

I know it sounds bizzare, but it only takes a tiny change in dosage and frequency to make a huge difference in people who have MTHFR issues. My DD only needs 67mcg (micrograms) every other day. Anything more than that and she becomes evil within days. Niacin has been our antidote more than once while I was playing around with dosing. 50mg of niacin calms her down w/in 45 min. I buy a bottle of 50mg niacin from KAL on Amazon and always have it on hand. The way I found her "sweet spot" was to cross that invisible line and dose until we got evil. Then I'd give niacin and spend a few days letting things calm down. Then I'd swing the other way and go without any methylfolate for a few days until evil returned. It was a pendulum for a few weeks as we went too high, then too low, then eventually zeroed in on the frequency and dosing that worked best. You also need to make sure you're giving 1000-2000 mcg of methylB12 or hydroxyB12 along with the methylfolate, since the two work in tandem. And be aware of how much folate she's getting in the food she's eating - especially anything fortified with regular folate, like cereal or Ensure or a multivitamin. My DD can't take regular multi's anymore because of the "wrong" folate. If your DD has MTHFR mutations, you'll want to limit how much regular folate she gets from fortified foods.

 

I probably am the mom he's referring to - for several visits last year, he had to endure my preaching about the incredible impact it had for DD and how I'd "found religion" in a way, how the whole methylation thing was our final missing piece that got both my kids to the best places they've ever been (once infections and environmentals were addressed). He's starting to add methylation to his toolbox but it's a little outside his primary focus and he hasn't delved into the minutia the way I did. If you do see her return to a good place once you've zeroed in on dosing, I'd really recommend 23andMe because MTHFR is only one of about 30 genes involved in methylation - and if this blip is caused by methyl issues and not some sort of Pans flare, then you may find that several other genes are also having an impact on her behaviors and there are things beyond folate you can address that may also help DD get on a firmer foundation.

 

On the other hand, there are people who've addressed mutations and not seen dramatic changes. So it's not a holy grail. For some, like my kids, it's a golden ticket. For others, not so much. But if your DD really does seem to be very sensitive, it's probably worth exploring.

[BeeRae22]

We started the folate drops before the big improvement came (before Mino, and before the resumed eating happened). We did o low and slow, it was recommended to start by her doctor. We did one drop a day for weeks, and then 2 drops for a long time. It was just last night that we went to 3.

 

Admittedly, I don't know much, if anything! About methylation. I started the folate because it was recommended. I increased slowly, again recommended. He told me I could try to increase again, and it could cause behaviors, etc. if I "crossed the line". Apparently, 3 drops crossed her line!

[BeeRae22]

LLM, so.... Don't give her any for a few days?

 

She is taking "Super Liquid Folate"- by Designs for Health

 

Now you've reminded me, that is was also either yesterday or the day before that she had a multivitamin too! ugh! I feel so dumb with all of this all the time!! I'm learning, but I'm a bit slow!

 

I will try the niacin she seems to be doing better as the day goes on, but still not where she was yesterday. thanks for your input!

[LNN]

I'd skip tomorrow's dose and then play it by ear. If she's better tomorrow, maybe give one drop Monday. You just have to base it on her behavior.

 

But I'm confused. I can't tell for certain, but the calcium folinate that's in your drops may not be methylfolate but rather the pre-methylated form of B9. This is fine if your DD doesn't have any MTHFR mutations, but not the form you want if she does have mutations. Has she been tested? My advice was based on the assumption she had MTHFR issues. Not that it's bad to supplement regular folate if you have normal MTHFR - I just wouldn't expect to see such a dramatic response to an extra drop of 400 mcg.

[BeeRae22]

Yikes- I can't speak to any of what you just asked! Except that, no, she has not been tested for MTHFR. Her doctor suggested that the 23andme testing could be something to check in to, if we wanted to explore that avenue, but we haven't done it yet.

 

So, with that said-- any new thoughts? I have not changed a thing, other than the one drop of the Super Liquid Folate, and the one multi vitamin. (Because of dd's eating/choking fears, she had not had any vitamins in a very long time, and she's still not at 100% in gard to eating, so her diet isn't great. Improving every day though!) She has not had behaviors like that in 2 months??

[LNN]

Because of her not eating, vitamin supplements would be really, really helpful. But without knowing her MTHFR status, it's hard to say what to do, except go back to what was working.

 

People with only one mutation on MTHFR can sometimes tolerate/use regular folate, but in smaller doses. But without knowing, it's just throwing darts in the dark. There are two issues you need to understand before ordering 23andMe. One is privacy - what the company can and can't do with your data (understand HIPPA and their research and privacy policies) and the implications of life insurance (tho I personally feel that for kids, the science will have advanced to the point that testing will become common and insurance companies will actually start to require testing the way the require physicals now - but that's just my opinion). There's a recent thread about 23andMe being owned by Google. I don't believe that's accurate - I recall the company is led by the ex-wife of Google's exec - but regardless, you need to be comfortable with the privacy issues. You can also test MTHFR via Quest et al and sometimes insurance covers it. If not, I think it's a $450 test. You can call your insurance co. and Quest and ask about prices. But for $99, 23andMe is a better deal IMO.

 

If you chose not to do 23andMe (and some people just don't want to go there), then going back to the routine you were on is probably your best option.