LNN

Pr40 - Perque is hydroxyB12 http://www.perque.com/product_sheets/PERQUE-Activated-B-12-Guard.pdf Amazon and many online vitamin sites carry it.

I'd post your SUOX question on Facebook's mthfrsupport page. I'm not that up on this one since 23andMe didn't test it. On the moly, RDA is 75mcg, which is 3 drops of Yasko's liquid. That's what I give daily. If you use the sulfur strips to test, you can adjust moly based on that but I wouldn't go about 150-200 on a regular basis. Yasko et al suggest using the strips to tell you when you can move on to other mutations. Some here have used them and perhaps they'll chime in. I didn't use the strips. I'm only guessing Alex is an overmethylator.because of his VDR Taq, COMT and MAO statuses. You'd need to read thru the heartfixer comments and use your own knowledge of Alex to get a feel for whether this is so. You can have a genetic mutation without that mutation being switched "on". So you can read that xyz gene can cause something but if you don't see that something, maybe the mutation hasn't been switched "on" yet or ever. But if he is an overmethylator, yes, he'd want to limit the amounts of methyl donors he takes. Doesn't mean he'd avoid them entirely. You do need a little of every nutrient. But you wouldn't want to supplement large doses of a methyl donor.

I've never looked at a 504 as a discrimination issue. It allows for accommodations (which I learned is a word with legal ramifications) in the classroom and curriculum. the 504 still holds a child responsible for learning the same material as peers. But we've used it for 1. validate our son's illness in the eyes of skeptical or unaware teachers and 2. a way to reduce homework demands when needed. I initially feel into the trap of trying to educate about Pandas (before we had a 504 and after), but I now only focus on getting my child what he needs to make it successfully thru the year. For tics, we wrote in that our son be allowed to take unlimited bathroom breaks as a way to relieve stress and go outside the classroom to have a tic-fest unseen. This also helped with urinary urgency. This was an important accommodation, since some teachers wanted to limit him in fear he was using it to avoid work or was going to miss instructions (had to make them see that if he was obsessed with having to pee, he wasn't listening to them anyway). Some teachers also allowed him to move his seat to a private desk in a quiet part of the room when they were silent reading and he might be humming or be easily distracted. We wrote in that he could have a water bottle at his desk to avoid the use of water fountains. He could take extra days in completing homework if needed or do only half the math problems if he showed comprehension He could dictate writing assignments to me and I'd type them when handwriting was too difficult. He would not be marked down or made to re-write something due to poor handwriting If he tested poorly, his teachers were asked to test verbally and if he could demonstrate understanding, adjust his grade upward to match his comprehension, not solely his written output. He was given seating preference keeping him away from doors or areas of "traffic" where he'd be more distracted. He's generally seated in front or among girls to reduce distractions (even he admits this helps a lot). Teachers are asked to check in with him frequently for comprehension to make sure he doesn't get so lost that he has no clue. No timed tests. As for not "getting it" - they may never, or they may grow as they work with your child and see the sawtooth changes first hand. You can't get it until you see it, IMO. But it's not their job to get it. It's their job to deliver new material in a way your child can process and adopt it. Sure, it may help them with future kids. But I've stopped worrying about how they view OCD. They just need to accommodate it. His teachers have asked "how will we know when he's in a flare and when we should hold him to the same standards as everyone else?" There are of course signs you'll see - handwriting, impulsivity, temper, etc. But what may be an increase in symptoms for your child may still fall within the bell curve of "normal" for the class. Lots of boys are hyper. How does a teacher know in October whether the bouncing around my kid is doing is normal for him or an increase? She doesn't. So I've told them "when you realize at the end of the day that you've said my son's name 100 times today and none of it was in a good way, call me." This has been far more helpful to them than my trying to educate them on OCD, tics, et al. But we've used a 504 for 4 years now and it's been helpful.

Since your DS has CBS+/-. it's possible you're seeing some sort of detox issue. You may want to read yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf and treat CBS first and then re-introduce the hydroxyB12/methylfolate. My son tics when he has a detox/herx issue (and he doesn't have CBS, can't imagine how bad it might get if he did). If you feel like you need some medical support on this, this site lists practitioners who treat methylation issues (just fyi - not all are MDs).http://www.mthfrsupport.com/practitioner-2/

Hope it goes well! If you change only a few minds, the ripple effect, and the impact on their patients....you can literally change lives. Great idea!

I will butcher any explanation of the technical differences between folate/folinic acid/methylfolate. So here's my sticky note version: folate = vitamin B9 - fine for those without any MTHFR issues, bad for those with MTHFR mutations and should be avoided if you have mutations (folate is in fortified cereals, fortified breads, most mutlivitamins - avoid, esp. if you are MTHFR +/+ folinic acid - folate gets converted in the body into folinic acid. It's converted into methylfolate for methylation but in the folinic acid form, is used for other biological "things" which of course I can't recall right now. methylfolate - in people without mutations, they take folate, their body converts it into folinic acid and then into methylfolate. It's the methylfolate form that's necessary for methylation (methylfolate + methylB12 work together as a team). If you have an MTHFR mutation, your body can't do the folate=>folinic acid=>methylfolate conversion. MTHFR +/- people can only do this conversion at about 50% efficiency and +/+ can only do this at about 10% efficieincy. So for your son, he should only be taking the methyl form. What's more confusing is that there are different forms of methylfolate (eye roll, deep sigh). Here's Ben Lynch's article on the differences http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ Don't worry about understanding it. Just use his good/bad list when you're deciding on a supplement to buy. on B12 - cyanocobalamin is the most common form you'll see in mutlivitamins. It's a synthetic form that converts to methylB12 in the body but in doing so, leaves behind traces of cyanide. It's cheap but it's also garbage. HydroxyB12 is a medicinal form of B12 made from bacteria. It's bioavailable but is best for "overmethylators" because a methyl group is used in order to convert it into methylB12. So for those with COMT+, MAO+ or VDR - this is a good form. (this would probably be your DS's situation) AdenoB12 and methylB12 are the forms found in nature. this is what you need for proper methylation. If you have MTHFR and no "overmethylating" genes tipping the scales, then these two forms are best for you. Methylcobalamin and methyl12 are the same thing. I use methylB12 only because I'm too lazy to keep typing methylcobalamin. PM me on the rest.

Mama2 - when you list folic acid, what do you mean? regular folic acid? folinic acid? methylfolate? Why were you supplementing a megadose 3x.week and also folate plus folinic acid pus some in his multi? My DD takes 67mcg of methylfolate every other day. If she took this much, even of methylfolate form, she'd be evil and a complete blubbering, angry mess. So the first thing that jumps out is you may be using the wrong form and you are probably using way too much. I don't think you're giving enough B12 - it should be every day and with his VDR Taq ++ and MAO+ and COMT+/-, it should probably be hydroxyB12, not methylB12 For your DS, I'm not sure the coenzymate B is the right blend. My son and I use this and like it a lot. But neither of us has MTHFR issues. My DD who does have MTHFR +/- wouldn't do well on this because it contains regular folate, which she can't process well. You list CBS +/+, so he should not be taking NAC or ALA. NAC makes my DD a flippin mess and it screwed up my liver enzymes and made me depressed (she and I are both CBS+/-). She takes CoQ10 as a separate supplement (be aware the CoQ10 comes in 2 forms. The better absorbed form is pricer). For CBS, it doesn't look like you're giving enough molybdenum. The CBS people in my family take 75-100 mcg/day. I can't comment on the TMG - have no experience with it. So I think it would be good to give his body a rest for a few more days, then slowly re-start with one supplement at a time. You know I'm an art major and not a doctor. But if you want to discuss offline, PM me.

1.7mg is a fairly high starting dose, even for an adult. Most of the methylation gurus suggest adults start at @400mcg (micro, not milligrams) and then move up to @800mcg. Some adults do need more than this but I wouldn't assume this until you start low and work up. Taking more than you need can produce the same negative symptoms as having too little. When you take methylfolate, you also need to take B12. Some people do best on methylB12 while others do better on hydroxyB12 or adenoB12, depending on the status of your other genes in the methylation cycle. If you only know her MTHFR status and don't know the status of these other genes, I might err on the side of caution and start with hydroxyB12. But some of this is trial and error and she'll have to try both to see which one makes her feel better. If you do know the status of her other genes, you need to determine whether the other genes make her likely to need more or less methyl donors and then use the form of B12 that's best for that need (methylB12 gives you more methyl donors than hydroxyB12). Perque B12 is one brand that has hydroxyB12. From what I can tell in my own family and from people here, an adult may need anywhere between 400mcg-15mg. This is a huge range. Start low, work up and have an eye out for when your DD starts to get too moody as you build up. This would be a sign you've crossed over her line and are giving too much. Not everyone needs methylfolate every day. Like Rowingmom, my DD8 only takes it every other day (67mcg). But also like Rowingmom, she takes B12 every day (1000mcg sublingual). MethylB12 is poorly absorbed and so you see doses being much higher compared to the methylfolate simply because it's estimated that only 10% of a sublingual B12 gets absorbed. If you're giving both methylfolate and B12 (don't use cyanoB12 - not very bioavailable) and you don't see changes, then consider moving up to doses in the Deplin range (I think they make a 7.5mg and a 15mg pill). But I'd start much lower to start out. Also, like Mayzoo, I've needed to move away from any multivitamin that contains any folate. DD gets very moody. We now use individual vitamins instead of a multi. We also limit fortified foods like cereal. All this said, MTHFR is not the only gene worth paying attention to. The 30 other genes in the cycle can also set you up for issues. So treating MTHFR can definitely help but realize it's not the whole picture. Good luck!

When you do IVIG, the donor antibodies have a "half-life" of 3 weeks, meaning half of them are done after 3 weeks, then the rest start to fade week after week. I'd personally wait at least 8 weeks before lyme testing. You want to make sure you're testing your son's native antibodies and not those he got from donors. In the meantime, start looking for a lyme doctor thru the groups mentioned on the other posts. Sometimes there's a waiting list to get in and sometimes doctors will make a clinical diagnosis and be willing to try treatment while you're waiting to do lab tests or waiting for results. In the US, some Pandas doctors have come to see lyme as a common trigger for PANS and others think it isn't an issue for our kids. From what I understand, your doctor does not investigate lyme. I personally think this is a big mistake and that if lyme isn't something he wants to treat (it's a specialty unto itself) then he should at least suggest that patients get tested by someone else. But - and this is just my opinion - if this doctor's treatments aren't helping and he's not willing to try other things, not even different antibiotics, then he's not listening to you. I'd consider getting another opinion from a doctor closer to you who does consider lyme. PANDAS is "strep-only" but PANS includes lyme and other infections and I think your son deserves to be evaluated by someone who'll look wider for what's making him so sick. (23andMe is a lab that tests your genetics. Some of us use it to find genetic issues that get in the way of our kids full recovery. But in your case, I think finding a lyme-literate doctor would be a better first step.)

I don't know if PB is a dopamine thing. It contains tryptophan, which is a serotonin precursor. I don't know how it effects dopamine. PB contains lecithin as an emulsifier (it keeps things mixed together). Lecithin has several components, two of which are phosphatidylcholine and phosphatidylserine. Some stuff I've read suggests phosphatidylcholine is "better" or superior for brain function but more expensive. Phosphatidylserine (which I'll abbreviate PS cuz I'm getting tired of typing that much) is one of the 3 ingredients in the ADHD drug Vyvanse (Omega 3 is one of the other 2). Some people who want to treat ADHD "naturally" use Omega3+PS. I don't use the Omega3 because DS has pyroluria and Omega 3s make his Omega 6 deficiency worse (they compete for the same receptors apparently). Instead we use Evening Primrose Oil. So I come across PS while I'm researching ADHD stuff and I put it on a mental sticky note. Then we do 23andMe and lo and behold, PS is also recommended for one of his mutations (can't recall which). So now I have two mental sticky notes, plus a lot of PB consumption. So I try it as a supplement and it does indeed help DS's focus. I initially started with one 100mg capsule/day then worked up to 2/day. When I dropped back to one (trying to save money and not sure how much of an effect is was still having...) I got notes from the teachers saying he was off-task. So we went back up to 2. That was last winter/spring. Over the summer, I dropped back to 1/day to lighten the pill load and didn't really care if he was as mentally attentive. So far, a month into school, he's staying on task with only 1/day in the morning. But if he gets sick or things start to slide, I'll add the 2nd pill back after shcool about an hour before homework. As I recall, PS is patented but there are about 6-7 companies that license it and re-sell under their own brands. I started with Source Naturals because I consider then a higher end co. but have since switched to Jarrow which is a little cheaper on amazon.

Peanut butter contains several "feel good" elements. Tryptophan and phosphatidylserine are the two that come to mind. I used to give my DS tryptophan because it's a precursor to serotonin. But he would still crave peanut butter. Then, based on his 23andMe results, I stopped the tryptophan and instead gave him phosphatidylserine (not to get him to stop PB but for methylation reasons). This not only ended his cravings for PB it also really helped his focus. So it's possible there's something in PB your body is craving and perhaps getting that "something" some other way would fix the craving. My son won't go near PB now, after practically living on the stuff. As for sugar, well yeast is an obvious thought. Perhaps consider an Rx of nystatin. Garlic is also a good supplement to keep yeast at bay, tho it is high in sulfur and not everyone can handle that. I've found that a hot cup of green tea is both relaxing and helps me focus, as green tea contains theanine, which like phosphatidylserine, is good for ADD symptoms. Gaba is a good calming supplement as well.

If your blood work comes back without any obvious triggers, you may want to read up on a topic called methylation. It's the process the body uses to turn raw ingredients of vitamins/minerals into bio-chemicals that fuel energy and makes neurotransmitters. You say she just started her period, which could mean her body has new needs for certain "raw ingredients" and her growing body is having trouble making enough calming neurotransmitters. I'm not explaining it well, but I'm very familiar with the sudden madness you're describing. My DD was unbelievably bi-polarish but has done a complete 180 by treating her methylation issues. See if this gives you some things to consider http://www.easytolovebut.com/?p=2782 I second HopesNY's suggestion of Dr O. She understands methylation and how to help kids with a variety of symptoms.

I'm curious why you say lyme disease isn't an issue in Croatia. A quick internet search found this: Ticks are important as transmitters of infectious diseases. In Croatia, the bite of ticks can transmit Lyme disease and Tick-borne Encephalitis (TBE), and in some cases Q fever, Ehrlichiosis, Babesiosis and some Rickettsial diseases. http://www.stampar.hr/TickSeason another result: A total of 3,317 cases were reported from 1987 to the end of 2003. Northwestern Croatia is an area in which Lyme borreliosis is endemic, but the disease has also been recorded in the other parts of the country, with the exception of the area south of Zadar. The clinical picture of Lyme borreliosis in Croatia is dominated by erythema migrans, followed by neurological manifestations. The diversified clinical picture is consistent with reports from other European countries, as is the isolation of Borrelia afzelii and Borrelia garinii, which are causally related to these forms of the disease. Tick density and tick infection rates of Borrelia burgdorferi have not yet been investigated in the part of Croatia free from the occurrence of Lyme borreliosis. http://www.ncbi.nlm.nih.gov/pubmed/17153550 (it sounds like cases haven't been reported south of Zadar but that this area hasn't been investigated by field researchers - only that cases haven't been reported - and of course if no dr. thinks there's lyme there, they'll dismiss your symptoms and not test for it - just like they do in certain parts of the US despite cases in all 48 continental states) and there's a Facebook page for lyme patients in Croatia https://www.facebook.com/pages/Worldwide-Lyme-Protest-Croatia/305273806250187

My DD and I have CBS+ and neither of us do well on NAC. If anything, I'd consider lowering the dose or stopping it, not increasing it. If he's CBS, he shouldn't be on it at all. But even if he's not, between the NAC and the sulfasalazine, you're adding a lot of sulfur. If he's not CBS+, NAC is also a film thinner - it's great for a mucus cough when you're sick. It's like Mucinex. But if he still has lyme, the NAC could be loosening biofilms and causing a flare. So lowering it while a herx passed might be appropriate as well. But it's just speculation without knowing the CBS status. FWIW - I took NAC for 2 months this past winter for a chronic cough, before I knew I was CBS+. It slowly made me depressed and I never suspected it was the NAC until I had my annual physical and my liver enzymes were dramatically raised. My PCP told me to stop the NAC and when we retested a month later, the AST and ALT numbers had dropped from the 80s *above 50 is high) to the 20s. So yes, NAC can be good for the liver - but only if you're not CBS+. In my case, it was bad for my liver. Like Rowingmom, my son gets tics when he's herxing or can't detox quickly enough. I try to add some things for inflammation and increase vitamin C and molybdenum (which can help you break down certain toxins released by yeast and some bacterias), resveratrol (aka Japanese knotwood) is a good antioxidant and anti-inflammatory. But in the end, we mostly have to ride out the storm. Chemar - good point about the dairy. My son doesn't consume much dairy and doesn't have tics except when we attacked an infection, but it's a good reminder to consider all culprits. Sometimes it's a bucket overflowing. On most days, someone can handle xx amount of things. But add one too many burdens and the bucket overflows.

My DH takes one Perque. My DD prefers SourceNaturals methylB12 1000mcg sublingual - more for the texture than the effect. But it works, so we're all happy. Mthfr.net has some articles on folate that might help you sort thru things in your head. On the moly, we didn't have any adverse reactions, so I can't share any lessons learned. You might try reading yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf to see if this sort of reaction is within expected responses (e.g. he's now able to start fighting a virus that's been there but his body couldn't fight before) or if it's a sign to lower the dose...or? When I have an unexpected response, I post a question on the FB mthfrsupport page and see what others have to say. They're mostly adults and don't come at it from a Pandas perspective but many there have CFS and do get the chronic infection perspective. I also want to say sulphur dumping can happen for awhile, even after you change diet. I might've read that in Yasko or heartfixer of I could be maming it up in my head. Sorry i can't be more helpful. Although 3 in the family have CBS, none of us had a negative response, so I don't have a depth of knowledge.

I know at least two moms who'll probably chime in on ERP strategies to help with fears of vomit (warning - it involves discussing vomit until you can't stand it anymore). For books, you might try looking for Newberry Award winners or this list of books http://www.nutmegaward.org/56901/index.html - browse the site and you'll find lists, year by year, of books selected as good reads for kids. This list is for kids grades 4-6 and then they have other lists for older grades. They also have an "acorn" series for grades 2-3 but I'm having trouble finding a link. Your state may have similar lists. You can also google 'reading lists 3rd grade boys" and get some ideas. A-Z Mysteries is age appropriate. A few other detective series. My son liked a Series of Unfortunate Events but it's rather dark and bizarre and probably not good if anxieties are high. Diary of a Wimpy Kid is obviously not an option! A few kids in 3rd grade were reading Percy Jackson and the Lightening Thief series but it was above my son's abilities and not his kind of genre. But we found some other Greek mythology stories he liked.

I hope they return your email, because I can't give you an answer. The C/G and A/T are the alleles on those snps. But even if you look up the risk allele, this doesn't seem to be telling you if that letter in the box is the risk allele, your personal results, or something else. If it says hetero, I suppose you can assume you're hetero for that snp (meaning +/-). Of the 4 you mention, COMT is the only one I've used for guidance/supplement purposes. Yes, I know the others are important too. But when I read heartfixer, the things you do to support these mutations are either things I'm already doing for other snps or they feel like "nice to have" supplements rather than the big hitter essentials. If they were our only issues, I'd feel differently. But since my family has bigger fish to fry with MTHFR, MAO, VDR... I just can't force them to take yet another pill to support MTRR or ACAT because it would be a little helpful. Just me. But with a dozen other mutations on our lists, these fell to the bottom. But COMT is important. It helps you decide if you need more or less methyl donors in your overall supplements and it tells you whether you should be using or avoiding things like tryptophan and tyrosine (as supps or in foods). It's the "warrior/worrier" gene and plays a big role for some of our kids anxiety issues. So I'd try to get an answer on that one at least.

Your doctor probably won't be swayed when you say "a bunch of moms on the internet told me you need to prescribe more antibiotics." So show him/her this article from the International OCD Foundation which supports a 6 week trial of augmentin and then perhaps a different class of abx such as azithromycin (page 5) http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS%281%29.pdf Also see page 6 of the same article which supports what MomWithOCDSon writes about PANDAS kids needing to start with much lower doses of an SSRI than most kids. Finally, show your doc this paper by Pandas researcher Tanya Murphy which shows some antibiotics have both an immune-modulating effect as well as psychotropic effects " Psychotropic effects of antimicrobials and immune modulation by psychotropics: implications for neuroimmune disorders." http://www.ncbi.nlm.nih.gov/pubmed/23148142 This may make the doctor feel more on solid ground, with a little professional support from respected authorities.

If you look at Swedo's papers and the literature on the NIMH site - the criteria is sudden onset OR significant abrupt rise in OCD symptoms. You do not need to be OCD-free to fit the criteria. It means you don't have the typical wax/wane pattern but rather an abrupt spike as a result of an infectious trigger. PITANDS and PANS do not require that trigger to be strep. But it's great that your psych is willing to do a trial of antibiotics - if possible, get a 30 day script. 10 days is often not enough. Also, if you can stand it, hold off on the abilify for those 30 days. If you start both at the same time, neither you nor your doc will know which is responsible for any improvements. At the top of this forum, you'll see some pinned discussions and one of them is Yale's PANDAS questionnaire http://www.latitudes.org/forums/index.php?showtopic=18905 which might help you sort things out in your head. The sudden-onset criteria is tricky. Some parents can tell you the exact hour. Others see things creep in over weeks or sometimes it could be months before they have an AHA moment and realize something's really changed.

Folic acid is generally thought of as "bad" or unusable if you're MTHFR +/+. Less ink is given to whether you can use folic acid if you're only +/- tho the literature seems to always end up implying you'd do better on a methylated form of folate regardless of whether you have one + or two. So folate=bad However, some stuff I've read suggests you need folinic acid even if you have MTHFR issues because folinic acid is used for things other than the methylfolate+methylB12 marriage that creates ATP. I do not specifically supplement my MTHFR +/- family members with folinic acid for three reasons. The first is that it's already expensive and their pill burden is already high (about a dozen individual vitamins/supps per day). The second is that I've already tied myself in knots on this subject numerous times and my brain just doesn't have any more room to make a spot for what role folinic acid might play or where I might find just the right dose, product, etc. But the most honest answer is that I'm just tired. I don't religiously restrict regular folate from my MTHFRs diets. They consume fortified breads and cereals and food stuffs. So they're likely getting plenty of folate that, because they're MTHFR +/-, they "should" be able to convert into folinic acid and/or methylfolate at about 50% efficiency. Based on moods and behaviors, this approach seems to be working, so it's close enough for me. That's not to say this would be true for everyone or for people who are MTHFR +/+. It just seems to be ok for my family and I've made a practical decision to leave things be, regardless of whether it's the "best" I could do. It's my best for right now. As you said, with the COMT +/+, using hydroxyB12 is probably better for him than methylB12. You may want to look at niacin to further help with overmethylation. But it'll be trial and error. Sometimes I google methylation questions and hit on threads from other forums, even discussions several years old, from the autism and chronic fatigue worlds. You can find some good (and not so good) ideas and products that way too.

No, you don't need to run 23andMe or Genetic Genie if you have Yasko's results. Genetic Genie takes 23andMe, runs them thru some sort of query report to pull out the 30 or snps Yasko writes about, and then puts those snp results into a table that looks just like Yasko's report (minus 2 snps Yasko tests for that 23andMe doesn't - SUOX and NOS). So you're already where you need to be to get started. Take your Yasko results and use this to interpret: http://www.heartfixer.com/AMRI-Nutrigenomics.htm (scroll down - there are 50 pages of text below the diagram). I copy the whole thing into a word doc, then delete the genes that don't apply to me and delete the recipes, fluffy stuff at the end... I then have a 20 page doc that only talks about the snps I have mutations on. From there, you can write notes in the margins, highlight the "take this but not that" suggestions, and try to figure out if overall, you're an over or undermethylator, which tells you what form of B12 you should use, whether you should use a lot of niacin (a methyl taker that helps if you're an overmethylator) or supps that are methyl donors (e.g. methylB12). Hope that helps.

We haven't dealt with fevers in a long time and there was so much going on back then I can't say how it effected his tics. But I can say that his tics were almost always related to a detox problem. When his body had toxins from dying bacteria or yeast, he tended to tic until his body's garbage collection system got caught up with the onslaught of toxic dumping. High dose vitamin C (1000mg) helps, molybdenum helps, activated charcoal (taken 2-3 hrs away from any other supp or med), vitamin e, resveratrol (aka Japanese knotwood), milk thistle and motrin were my go to things. Not all of them at any one time - I'd try one or two and then switch if something doesn't work. It's not an immediate cure. But it helps lighten the load and shorten the duration of tic episodes.

Amazon carries Perque, which is hydroxyB12 (or possibly a hydroxy/methyl blend - can't recall). Amazon may carry a few others as well. Also check Yasko's Holistic Heath online store. My DH uses Perque.

We no longer get the flu shot - between the questionable effectiveness and potential for flare, not worth it IMO. However, if you chose to vaccinate, get the dead virus shot and ask for a single dose vial, which will not contain thimerosal. If you get the shot from the larger, multi-dose vials, it will contain thimerosal.

I totally agree. I have mutations similar to my son's and yet I don't have any Pandas issues. If there are "Pandas" genes, I don't think they're found among the 30 or so snps looked at in the methylation cycle. (tho if it's a perfect storm of numerous mutations, I wouldn't be surprised to see COMT or MAO among them.) So I don't look at methylation as a "cure" or workaround for Pandas. I think you still need to fix the infection and use anti-inflammatories and all that. I just see methylation as a way to make the foundation stronger, to help the body not have a shortage of necessary supplies to make neurotransmitters and most importantly - to help the body survive an illness without running out of supplies before the job is finished. I subscribe to the idea that pre-Pandas days, my kids were running at only 80% on an average day. Then when they got sick, their bodies needed 150%. What limited resources they had were diverted toward fighting infections and they were left short-supplied when it came time to make neurotransmitters and to re-fueling the immune system. They were going into war empty-handed. I believe my son (maybe my daughter) still has whatever genetic mutations that make him susceptible to strep. I know if he gets a bacterial infection again, I'm going to see a return of symptoms. Treating methylation blocks hasn't changed that. But my hope is that treating methylation issues may help his body better fight the next infection and may keep him from a bad episode. And maybe, just maybe, it will help him ward off some infections before they have a chance to invade in the first place. I also know that when he's healthy, treating methylation issues has given us additional gains academically and mood-wise, bringing that pre-Pandas 80% up to the 100% I'd always known was possible but didn't know how to get there. (I use the term methylation loosely - for me, it also includes supplements like gaba and diet that keeps an eye on glutamate. I'm not just talking about the 30 or so snps.)