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DS15, as I posted yesterday, has been up until 5:30am every night over the past week +.

 

Last night I noticed that he was a little manic with his moods, going from very happy to crabby to very happy in short bursts. For example, I left the house and he was totally cool and told me to have a good time. His father comes in a few minutes later and he's in a bad mood. His father says he can borrow his laptop, he's in a good mood. But it really went back and forth. Thankfully, the bad moods are more of a sulky teen type attitude, but it has me wondering if it's because of a pill, especially the hyper happiness (nice to see a smile, but he was almost too happy).

 

Currently we are on:

Augmentin XR 4000

Valtrex 2000

Doxcycline 200mg

Folinic Acid 5mg

Ubiquibol 100mg

B12 methylcobalamin - 1 pill cannot remember the dosage

Luvox CR 100mg (SSRI)

 

Yesterday I tried QueenMother's advice and woke him up earlier, but at 5:30 he was in my room telling me he cannot fall asleep (he fell asleep on the couch before 6am though).

 

I was wondering if the increased hyper/moodyiness are connected to the insomnia.

 

Anyone have experience with this? Sound like anything?

 

He was much better after we stopped the NAC, so what other puzzle pieces are there?

 

I find that the collective wisdom on this forum, is worth more than the advice of 100 PANDAS "experts" - if I had stuck with the lists feedback in Jaunary, maybe DS wouldn't have gotten so stuck : P

 

Thanks as always,

T.Anna

DS15

 

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Two items catch my attention - folinic acid and Luvox

When I was trying to find the right dosage of methylfolate for my DD8 (who is MTHFR C677T +/-), I saw rapid bi-polar mood cycling when she was untreated but also when her dose was too high. Your son is on 5mg. Many adults only need to take 800mcg. So it may be more than he needs. You might try reducing the dose, or skipping a day or two. It takes 2-3 days for my daughter's mood to stabilize when I've gone too far in one direction. If your son gets less manic, it'll be a clue that you may need a lower dose. If nothing changes after a few (2-7) days, then I'd move on to look at the Luvox. He may very well need folinic acid, but at a much lower dose.

 

Both the folinic acid and the Luvox are working on his neurotransmitters. But Luvox dose changes need to be done much more slowly, so I wouldn't do that without working with your doctor. It's possible that as the folinic acid (at the right dose) does its job, you'll need less of an SSRI. But the easiest thing to adjust quickly is the folinic acid, so I'd start there and then use that as a guide to what to look at after that. You may end up lowering both.

 

If you haven't done 23andMe testing, you may find it very helpful. Many of of have found that MTHFR is only one of many hurdles and treating the whole picture yields even better results.

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Thanks LLM. You were right about NAC, so I will try lowering the Folinic.

 

I have the Luvox in 25 mg dosage, so if it comes to that I can lower that too (I've been wondering about this).

 

I would love to do genetic testing, I will do it with the next round of blood tests.

 

Btw, when I mention the NAC being the culprit to the doctor he said we'll have to keep that in mind when we do genetic testing.

 

Do you think it the B12 can be contributing at all?

 

Thanks as always,

T.Anna

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The genetic testing I'm referring to is 23andMe - a spit test, not a blood test. You order the kit directly from their web site, no doctor involved. I know Dr T is also ordering a separate genetic mitochondrial test thru Courtagen, but that's not what the test I was talking about. You can order 23andMe any time. Unfortunately, it takes about 7 weeks to get results, but the info can be very helpful.

 

While I have no medical training, from what I've read, I don't think the B12 would be the issue. When you supplement with methylfolate, you also need to supplement with methylB12 - the two work as co-factors and both are needed together. If he's only taking one tablet, I'm going to guess it's a 1000mcg (aka 1mg) tablet that dissolves under his tongue. If you end up staying at a high dose of folinic acid, then you may actually end up needing more, not less, methylB12. There's conflicting info about how well methylB12 is absorbed or ends up being bio-available. Most writings seem to agree that 1000mcg is on the low end of what you'd need, since much is lost before becoming bioavailable.

 

Now, if he didn't have an MTHFR issue at all, then maybe methylB12 could cause problems. My son does not have any MTHFR issues (my daughter does). My son tends to have too many methyl groups floating around, so adding methylB12 would make him edgy. He actually does better on adeno or hydroxyB12, because the body must use up a methyl group to convert the hydroxyB12 into methylB12, which serves like a little sponge for him and soaks up an extra methyl group. Since starting him on hydroxyB12, he's less aggressive/irritable. That's why I've found the testing to be helpful. It gives you a bigger picture than just testing for MTHFR alone.

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First of all, I would stop the methylcobalamin and replace it with hydroxycobalamin. You can order this at www.holisticheal.com. I would also drop the folinic acid. The form of folinic acid you are giving is not ideal, according to Dr. Yasko. Folinic acid is a "formyl" type of folate that has to be converted to the "methyl" form. Regular folic acid competes with TMF. You want to get metfolin or folapro or order 5-TMF (you can also order this from www.holisticheal.com or get metfolin/folapro from your local vitamin store). Just make sure that it says 5-methyl-tetrahydrofolate. Give an extremely low dose (a sliver of a pill or a sprinkle of a capsule) early in the day because it is a methyl but this is the form that you need.

Are you giving ubiquinol for a specific reason? Ubiquinol (coQ10) is used in mitochondria for energy production and I would drop it for right now. If it is absolutely necessary for some reason as dictated by your doctor, I would suggest giving a tiny amount early in the day and seeing if it helps with the sleep issues.

I also would ask the doctor if the Luvox could gradually be lowered. Sometimes too much serontonin presents with hyper, agitated, manic-like symptoms.

And definitely try the GABA/magnesium citrate that I recommended earlier as it will take the edge off and hellp your son to relax. Good that you tried getting him up earlier and I would recommend to continue doing that and give vitamins/supps/meds early in the day.

I really think the culprit is the methyB12 and the ubiquinol, fwiw.

QM

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Also, I forgot to add that Dr. Y says that you have to have lithium in place to transport the B12. Get some valerian root at your local health food store and put 3-4 drops (NOT droppers) in a glass of water and give at night. Valerian root is very calming but also has traces of lithium so it helps transport the B12. If you take a lot of B12 but are low on lithium, the buildup of B12 can cause hyper-edgy states, as well.

Don't we all wish we had more diligent in our chemistry courses? :wacko:

QM

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QM - you've been at this longer than I have but I'm surprised by your recommendation on hydroxy vs. methyl B12. If T. Anna's son has MTHFR issues, I've always read that methylB12 was the suggested form, as this mutation interferes with the body's ability to convert other forms into the methylated form. Can you help me here?

 

As for the folinic acid vs. methylfolate, I agree with you from personal experience but I've also read that folinic acid has it's place in certain body functions and that both folinic acid and methylfolate are needed. Not knowing T Anna's son's medical history, it may be appropriate for him to take folinic acid rather than methylfolate, no?

 

On the CoQ10/ubiquinol, my DD takes 100mg for fatigue/CBS issues and while she does have trouble falling asleep, she had this problem long before starting CoQ10 and when I stopped the C0Q10, the trouble falling asleep didn't go away. She just dragged through the entire day and then still couldn't fall asleep. So that wasn't the thing that struck me as far as a culprit for the rapid mood cycling. Gaba was not good for my son at all, tho I can find no good reason. It made him very moody. But again, 23andMe would put a lot of this speculation to rest.

 

T. Anna - my point in replying wasn't to pick a fight with QM, a kindered spirit and fellow Tarheel. It was to show that without concrete testing, doctors as well as moms who google too much will give you conflicting advice or see a set of symptoms differently. Best to spit and see what comes of it. :)

 

In the meantime, if you decide to start or stop things, change only one thing at a time and give that change time to work/register before changing something else. Otherwise, it gets very complicated and you end up wasting time, no wiser than before any experimenting.

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Thanks guys!! I ended up changing the folinic acid. He was on folinic acid + Deplin (l-methyfolat) and Dr. T didn't like the Deplin all along (prescribed by Dr.Hollander)...so I took that out a few weeks ago (LLM, when you mentioned a folate trap and I asked Dr T he said to go off it). Now we'll see what happens : )

 

Thanks as always,

T.Anna

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Very low dose folinic acid is definitely fine if there is a MTHFR problem but the methyl folate is still the one needed to bypass that mutation....and that, too, should be cautiously low and then increased slightly. Without the genetic testing, it is hard to know for sure, but since there was a problem with NAC, my brain immediately went to CBS problem instead of MTHFR. NAC is a sulphur donor and, if it is not tolerated, I would be cautious of anything that affects the CBS until I knew for sure. Folinic acid is not good for CBS upregulation.

My daughter has MTHFR and COMT problems and she cannot handle high doses of methyl folate at all, even though she needs it in very small amounts. Every kid responds so differently .

I very much agree, LLM, that it is difficult to know for sure without the testing. It's sort of like trying to drive in London. on the wrong side of the street. with the steering wheel on the passenger side. in the pouring rain. without a map.

I am still thinking it's the folinic acid and methylcobalamin (though I will concede on the ubiquinol) so please keep us posted.

QM

Edited by queenmother
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Yes, my DD and I both have CBS and can't handle NAC. It makes her very bipolar-ish and it depressed the heck out of me (tho it was great for my chronic cough). So I won't be surprised if CBS is an issue - and in that case, T Anna, you'd want to seriously consider lowering all supps slowly as you address CBS. A CBS defect is like having the drain plug in the bathtub not in place. You can pour tons of supps into the tub to fix MTHFR and serotonin/dopamine imbalances, but they all go down the drain quickly until CBS is addressed. Then, once the plug is in place, you can look at the other mutations and slowly add supplements to help with remaining issues. So if it once took 100 mg of something before CBS was addressed, it might only take 10mg of something once that's better regulated. All speculation at this point.

 

Like QM, my daughter also has MTHFR and COMT (in addition to CBS et al) and she too only needs a very small dose of methylfolate (67mcg every other day). yet, ,without it, it's like living with Cybil.

 

So it sounds like the peanut gallery is in agreement on looking at lowering folinic acid and/or eventually switching to small amts of methylfolate instead. No NAC. Put lowering the Luvox on the radar once you have spit results. Not sure we're in agreement on the methyl vs hydroxy B12 but that's why I still hold this forum near and dear - I keep learning and I'm far from an expert on this stuff. And you'd never want me behind the wheel on an English roundabout!

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Lol! You guys are great!

 

Anyone want to weigh in on why he is hitting himself in the head at night? He used to do this in November/December when he was still fighting the rituals and would get frustrated. He started doing it again Saturday night or Sunday night...which is post NAC removal and pre folinic acid tampering.

 

On the plus side, he was sleeping heavily by 5am this morning, so we've gained an hour!

 

T.Anna

Edited by T.Anna
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Do you know why he's hitting his head? Is it due to frustration or is it a stim? Can he articulate it?

I will toss out a few ideas just to think about - not suggesting you tinker with anything, since I'm only thinking out loud...

 

My DS will sometimes bang his hands against his head in frustration - he doesn't do it often, it seems like a "normal" expression of extreme frustration and he doesn't hurt himself doing it. Only does it a few times and then moves on to punching a pillow or stomping a foot. Because of his 23andMe/methylation picture, he seems to be an "over-methylator" and prone to aggressive/intense anger when frustrated. Giving him niacinamide (B3) and hydroxyB12 help take the edge off. So one of the things you'll need to do if/when you do testing is to determine if your son is an over/under methylator and perhaps supplements to match that tendency would help.

 

If it's more like a stim, you might want to talk to DeeDee. She told me that sometimes a CBS issue (and some of the discussion above hints that your DS might have this too) can cause "stim-like" actions like arm flapping. There are several supplements recommended for CBS but I'd hesitate to start tossing them into the mix until you knew his CBS status. But in lieu of adding things, there are things you could reduce/eliminate, such as restricting protein (meat, cheese) and limiting milk (because it has Xanthine oxidase which uses up molybdenum and adds to your sulfite problems). You could also consider Gaba, but only after you were done messing with the folinic acid.

 

I know you want answers now, not 8 weeks from now. But a few times, I jumped the gun and assumed I could make an educated guess about whether something would be good or bad and I was wrong. Like DeeDee posted in another thread, I found out I'd been giving things that were actually working against us, even tho those things were supposed to be "good" for just about everyone. Wish I could give you more concrete suggestions.

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Sounds like yeast/fungus to me. Hyperness, silliness, inability to sleep, moody, stimming are all signs of systemic yeast/fungus. Have you done a comprehensive stool yet or tested him for yeast?

 

Here is an over view on yeast. Spit test, etc.

 

 

Syclovir sounds like a good product. We have not tried it because we are pulsing Diflucan and Nystatin.

 

 

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t.Anna, gaining an hour is definitely a step in the right direction!

Great idea, SF Mom, to do a comprehensive stool analysis and check for yeast. And good advice, LLM, on possibly lowering the CBS load.

As you lower the folinic and give TINY amounts of methyl-folate, you may see all of these moods and behaviours changing. Keep us posted.

And I hope you continue to gain hours each night!

QM

Edited by queenmother
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