LNN

It depends on what you're looking for in a doctor. They are very different people with very different mind sets and treatment options. Since you've been on the lyme trail for so long, you've obviously done all sorts of abx combinations and supplements. So I'm not sure what else Dr T could offer that your LLMDs haven't offered already. Dr B could offer IVIG if that's the direction you feel you want to follow. Dr B is certainly staffed better but I understand that his staff plays quite a gatekeeping role and getting in contact with him personally can be just as frustrating as trying to contact Dr T. To throw a monkey wrench into things, I'll toss out a third name for you to consider - Dr. O in CT. (Or Dr M in CT if you're looking for an LLMD who has a number of Pandas/lyme patients). The reason I'd recommend Dr O is that she comes from the autism world and she takes a whole body/support approach. Whereas Dr T is focused on the causation and Dr B is focused on suppressing the immune response, Dr O seems focused on supporting the things that have gone wrong in the system so that the body can play a major role in healing itself. It's a strategy we followed with Dr M with great success. The reason I say Dr O first is that it seems you may be looking for someone who is not an LLMD, but both of them believe in integrative approaches. I don't mean to dis either Dr B or Dr T but given your backstory, I had to put Dr O's name out there for your consideration. You can PM me if you want contact info, or if others who see her chime in, they can probably give you better details.

I'm so sorry. I can understand how frustrated and stuck (and broke) you must feel. If Band 41 is both IgM and IgG positve, doesn't than support the idea that he has some sort of active infection, even if not lyme? Shouldn't a dr want to figure out what that infection is? Not saying it's lyme. But it's antibodies reacting to something, no? I wish I had some sage advice, some "aha" information that could put the wind in your sails. The only thing I can put on the brainstorming board (aside from finding out what else makes Band 41 positive), is methylation. If you ever decide to do the 23andMe spit test ($99) it could offer some insights and doesn't require a doctor's order. It's helped my family a lot. Feel free to PM me if you want to discuss it. In the meantime, your family is in my thoughts.

Those with MTHFR C677T mutations can't convert folic acid into methylfolate well. Estimated that when you're +/- you can convert about 40-60% and if you're +/+ you can convert about 10%. The rest puddles up into a folate block, which can cause issues. You can try it, but it makes my DD emotional and angry. We avoid it now. I also limit the amount of fortified cereal to avoid folic acid.

We use NOW Foods psyllium husk capsules 500mg from amazon. We all take 1/day (works better when you drink plenty of fluids but I don't fight that battle). The bottle says you can take 3/day but that makes things too loose for my kids. 1/day or sometimes 2/day if transit is too slow. I'm not married to this brand - just easy to find in stores. Garlic I think was Spring Valley or Nature's Way 1000mg capsules 1/day. But again, wasn't married to the brand or dosage.

My son was on the same combos as yours. We used Theralac daily and used Truflora twice a week. Never increased the probiotics above 30 Billion CFUs, tho I found it helpful to add garlic capsules to his dinnertime pills. We never had yeast issues that I could tell and a recent candida blood test came back negative.

The editor who writes this weekly newsletter, Caroline Miller, has been very supportive of Pandas. Last month, she removed outdated/skeptical info about Pandas from their website and interviewed a few families from the Pandas community. She then published a nice intro story. I believe she plans to do a follow-up story soon. I contacted her about an hour ago to thank her for this article and for her support. The best thing we can do is to post comments at the end of the article to show our thanks and to let her know that Pandas families are following/support Child Mind. It would be great to have a second (in addition to IOCDF) large non-profit supporting Pandas awareness/advocacy as well as research (they do/fund a significant amt of research). Please post supportive comments to the article and let Child Mind know we're out here.

Thanks for the Core link! I sent you a PM - go to the upper right corner of the forum page and you'll see a pull down arrow next to your screen name. The drop down menu will give you an option to check your messages. To send a PM, you'd click on my name and you'd see an option to send me a message.

I have two kids. One was what we thought was "classic" Pandas. Turns out that he had chronic lyme first, then strep hit and that was the event we based treatment on. But regardless of how aggressive we were (pex, IVIG), he couldn't sustain remission. That's how we finally found the lyme, 3 years after the bite. 2 yrs with an LLMD has brought him back to baseline. I have a second child, a daughter, who we labeled as kinda sorta maybe Pandas. Her Cunningham lab results paint a very clear Pandas picture but she's never had strep. Her lyme test was indeterminate. We treated for lyme and her GI issues resolved, but we'd still see occasional behavior explosions for no apparent reason and we worried that she'd either learned behaviors from her brother or she was maybe bipolar. Daily zith helped for a long time until it didn't. What we found with her is that maybe she had lyme and an autoimmune response to it. But her lasting issue has been a problem with methylation. Methylation is the process your body goes through to take nutrition (vitamins, minerals, amino acids from foods) and process it into the ingredients for energy and neurotransmitters (and many other things not involving behavioral issues). She has genetic mutations that get in the way of her ability to properly, evenly regulate serotonin and dopamine. By limiting foods high in certain things, by adding supplements that work with her body or do things her body can't do for itself, we've been able to get rid of these explosive, manic, "cybil-like" outbursts. She is blissfully "normal" even through allergy season (which once produced great bursts of drama and lability) and has been off antibiotics for 2+ months. So my recommendation is two-fold - consult an LLMD (lyme literate MD) and explore the topic of methylation. Both may bring relief. There's a great autism doctor in Wilton CT (Dr O) who can help with the methylation piece (she knows a bit about lyme). there's a great osteopath LLMD in the Hartford area (Dr M) (who knows a bit about methylation). I will send you their contact info in a private message. In the upper right corner of the top of the forum, you'll see your screen name with a drop-down arrow next to it. Pull down the arrow and you'll be able to view your messages. In my experience, my kids will test limits, they are not angels, but the majority of the time, when they are evil, it's because of either infection or methylation, not a "choice". When they're healthy, they show, at their core, that they are genuinely nice people and not diabolically manipulative.

Even tho my kids are too old to sleep with a parent, I am guilty of falling asleep next to them on anxiety-filled nights. Sleep trumps political correctness, IMO. I think methylation issues seem to be a part of your son's struggles and MTHFR is only one piece of the picture. If you haven't done 23andme, it seems like it could be a well-spent $99 for you. And I agree with mdmom - you would probably really benefit from seeing an LLMD. I work with a great one ( who gets lyme and Pandas) in central CT. PM me if you want his name. In the meantime, hang in there. We've all hit rock bottom more than once. it will get better again. But it can be a very slow process. Believe in him and believe in yourself.

Many Omega 6's are inflammatory. But my understanding is that evening primrose oil is not. D's Mom - have you tested for pyroluria? Have you looked into 23andMe to look at his Vit D receptor status? I ask because with pyroluria, you need huge doses of B6 and zinc, yet ironically, you also need to keep an eye on/supplement copper. High doses of zinc can deplete copper and copper plays a role in your MAO gene, which regulates how quickly your body degrades serotonin and dopamine. My DS has an issue with his VDR Taq gene, his COMT gene and his MAO gene - all of which conspire to make him high in dopamine/a slow degrader or dopamine and an overmethylator. He ends up flooded with the stuff, which can contribute to anger, aggression, bossiness...dopamine also plays a role in tics (DS was once a huge ticcer). Copper plays a role in upregulating MAO (i.e. making it work faster, which is what my DS needs). So we supplement with both zinc and copper. I also limit Vit D because in him, it adds to his dopamine problem (tho I will probably add low dose in the winter). We've also used garlic to keep yeast at bay in addition to probiotics. You may want to look at these things more closely (the pyroluria and genetics). And perhaps test zinc/copper levels.

Why is Pandas Network saying there is no clear diagnostic criteria??

My son was on antibiotics for 10 day treatment courses for his first 10 months of illness. Every time he came off them, he regressed and within 2 weeks, was back on them. We suspect chronic strep in the crevasses of his tonsils or adenoids. He had a T&A and only then did we see major - and longer lasting - improvement. But he kept regressing we found ourselves resorting to more and more aggressive treatments (first steroid tapers, then plasmapheresis, then IVIG). He would improve, then regress again. After 2 years and $$$$ later, we found lyme disease. Lyme was both a huge blow (we were already low in funds and spirits). Yet it was also the turning point. From that point, we had ups and downs, but sustainable gains. It's been 4 1/2 years but for the past year, he's been 95%. He's been off abx for 2 months now and except for some tiny OCD - which is likely habit more than true OCD, as it's not fear-driven - he is better than baseline. I say that because he was stricken with full blown Pandas at the age of 6 but before that, we'd seen several flares that we didn't recognize but were likely Pandas in toddlerhood. So he was periodically this unexplainable child and we feared his sudden changes. Now, he and the family have tools to deal with things quickly and we are stronger, healthier, closer, better. It's a new, higher baseline. But don't let our stories scare you. There are a few families whose kids have healed much faster and there are those who are off abx and use them only at the first sign of an episode. They just don't need to visit the forum often anymore. I don't believe there is any "cure" for pandas other than time (it seems to be less of a problem as you approach adulthood) and solid health. So as long as your child is still a child, you will always have to be vigilant and may need to stay on some sort of antimicrobial regimen for quite some time. But there are natural antimicrobials you can look into once it's time to enter the prophylactic stage. As for C-diff, there are supplements that fight candida - garlic, olive leaf extract, grapeseed extract? and others - as well as diflucan and nystatin. While 20 days of abx is not very long in our community. But if you're still seeing major issues, it's possible the infection isn't gone. You can consider different abx, a combo of two abx, testing for different infections (mycoplasma, lyme et al). I realize you're limited in choices - my DD is allergic to the penicillin and cephasporin families of abx. But a combo of azithromycin and bactrim helped her greatly. The other thing some of us have found helpful is a subject called methylation, which looks at unique genetic roadblocks that keep your body from maintaining neurotransmitter balances, especially when the body has to divert resources to fight an infection. Using specific supplements to detour around these roadblocks has, in some kids, brought major steps forward in both behavior and gut issues.

My son needs to avoid Omega 3s because he has pyroluria. Omega 3s and 6s compete and those with pyroluria need Omega 6s (evening primrose oil is an O6 that is non-inflammatory). Trust your gut. If he seems worse when on O3, I'd avoid them. We have found time and again, what is good for "most people" has not always been good for us. My DS gets angry and mean on Sacc Boulardis - which is a yeast probiotic. "Most people" find this to be a helpful type of yeast that crowds out candida, but I tried it several times and always got the same results. He does well on TruFlora, Theralac, and Ultimate Flora. I personally avoid non-refrigerated products, as I doubt how many little guys survive months in hot warehouses. FWIW - some docs recommend taking probiotics when stomach acid is low - like at bedtime, to allow better survival through the stomach. So what we did was abx in the morning, abx at dinner and then probiotics 2+hrs later at bedtime. (no type of probiotics seemed to have any effect on tics one way or the other) His tics seemed to have more to do with detox and inflammation.

I had the privilege of meeting Dr Swedo at a conference a few years ago. Pandas is not a simply a research question for her, it's personal. I think that's also true for Leckman. They have been touched by real kids, real heartache that they've taken personally. The same is true for Patrick Kennedy, who now is the driving personality behind One Mind for Research (execs from Braod and McGovern are on the advisory board of One Mind). In some ways, I sense this must've also happened to Tom Insel, who seems to speak on the subject of mental health from the heart. I've always felt that are kids were perfect models for brain diseases because they are "normal" when healthy and have mental illness when they have an infection. So theoretically, you could peak into their brains and have "before," "during" and "after" pictures. What changes when they get sick? Can you measure longitudinally and measure changes that could zero in on root causes? Could you measure the same person's BBB and measure changes? As long as Pandas/Pans is considered to be rare, you're not going to interest career researchers in it because their work won't be impacting hundreds of thousands of lives the way cancer, MS, alzheimer's research will. They need to be touched by it personally and also see that the kids represent a unique way of studying a disease. How that happens, I'm not sure.

I came across this article and it really struck me. It perfectly describes not only our kids, but the parents too... http://greatergood.berkeley.edu/raising_happiness/ Failure Makes You a WinnerMay 20, 2013 | The Main Dish | 0 CommentsAnd what all heroes have in common. “The true test of a champion is not whether he can triumph, but whether he can overcome obstacles.”—Garth Stein What quality does the Buddha share with Luke Skywalker and Joan of Arc? What links Harriet Tubman with Harry Potter? It has nothing to do with enlightenment or magic. It has to do with struggle. These heroes share a key quality: GRIT. There has been some discussion in the media recently about grit, but many people, especially parents, have been asking me what the term actually means. I think the best way to describe grit is by starting with Joseph Campbell and his classic analysis of the “hero’s journey.” Campbell explains how the journey always begins when the hero leaves home and all that is familiar and predictable. After that, Campbell writes, “Dragons have now to be slain and surprising barriers passed—again, again, and again. Meanwhile there will be a multitude of preliminary victories, unretainable ecstasies and momentary glimpses of the wonderful land.” It is grit that makes our heroes face down their dragons and persist in the face of difficulty, setbacks, failure, and fear. They fall down and get back up again. They try their hardest, only to fail miserably. But instead of giving up, they try again and again and again. And it isn’t just historical or fictional heroes who need to be gritty to rise to the top. Recent psychological research has found that grit is one of the best predictors of elite performance, whether in the classroom or in the workforce. Defined by researchers as “perseverance and passion for long-term goals,” grit gives us the strength to cope with a run-of-the-mill bad day (or week or season) as well as with trauma or crisis. It turns out that grit predicts performance better than IQ or innate talent. Grit makes us productive and successful because it allows us to reach our long-term goals despite life’s inevitable setbacks. This ability to overcome challenges makes us stronger and more masterful at our tasks. Moreover, the ability to cope with difficulty—or to be resilient after tragedy—paves the way for our long-term happiness. Grit is not really a personality trait as much as it is a facet of a person’s character that is developed like any other skill. Babies are not born with grit any more than they are born with the ability to speak their mother’s native language. We humans develop grit by encountering difficulty and learning to cope with it. And with that in mind, here’s some perverse “good” news: No life is free from challenges or difficulties—in other words, we’ll all have plenty of opportunities to develop grit. Out of our setbacks and failures grow the roots of success and happiness. Grandmaster chess players, great athletes, scientific geniuses, and celebrated artists learn, in part, by losing, making mistakes, and failing. Consider from Michael Jordan (who, incidentally, was cut from his high school basketball team): I’ve missed more than 9,000 shots in my career. I’ve lost almost 300 games. Twenty six times I’ve been trusted to take the game winning shot and missed. I’ve failed over and over and over again in my life. And that is why I succeed. The even better news is that most people have the capacity to develop grit. This summer I will be posting more articles about how to foster grit in yourself and others. But for starters, let yourself star in your own hero’s journey. Instead of making excuses and giving up when things don’t go well, dig in. How can your passion help you persist, despite adversity? How can this hard time make you stronger? What unseen benefit might be lurking around the corner? I’m not suggesting that you invite misery into your life, or force yourself always to focus on the bright side. But I do think we’re better off when we see a challenge not just as an inconvenience or injustice but as a chance for what Campbell calls a “boon,” or dramatic win. Although it might feel hoaky or even arrogant at first, putting yourself on the trajectory of a hero can give you a new perspective on life’s challenges—and new strength to deal with them. (If you want hoaky, choose a theme song! I have a whole “Be Gritty” playlist for when I need to persevere in the face of a setback; my favorite is from one of Ennio Morricone’s soundtracks). There are drawbacks to the hero’s journey, of course. For example, you won’t be able to go back to the place where you started: Once you’ve faced down a particularly difficult challenge, you will have grown so much you might hardly recognize yourself. But the advantages to developing grit are great, and the “boon” is almost certainly worthwhile. ———————————————————————————————- Duckworth, Angela Lee, and Patrick D Quinn. 2009. “Development and validation of the short grit scale (grit-s).” Journal of personality assessment 91(2):166–74. Retrieved March 5, 2013 (http://www.ncbi.nlm.nih.gov/pubmed/19205937). © 2013 Christine Carter, Ph.D. Like this post? We hope you’ll become a fan of Raising Happiness on Facebook, or sign up for the Raising Happiness monthly newsletter.

This isn't a new article (2007) but it outlines one theory of what's going on in autism. I personally think, after 5 yrs of battling these issues, that this is also a little of what happens to Pandas kids. They may be able to maintain a level of "normal" when healthy, but when extra resources are needed in the system to fight infection, when the body self-attacks, you see an imbalance of neurotransmitters, a dysfunction in the body's ability to detox. Too much oxidative stress breaks the camel's back. Addressing methylation hasn't "cured" the Pandas - DS is still vulnerable to infection triggers. But addressing his unique methylation roadblocks has helped in many ways. http://www.utdallas.edu/~mxa049000/lessons/research/literature/Autism/new/deth%20autism%20methyl%20hypoth%2009.pdf 1. Sulfur metabolism and oxidative stress. . 2. D4 dopamine receptor-mediated PLM 3. Heavy metals, xenobiotics, redox and methylation. . 4. Oxidative stress in autism 5. Redox/methylation-related genetic factors in autism. 6. A redox/methylation hypothesis of autism . . . The authors are from Northeastern in Boston. Anyone ever work with any of them?

I will PM you the name of our LLMD in CT. We once talked about why some great names in lyme tout success with various protocols and yet when he himself has tried those protocols with his patients, he doesn't see the same success rate. His personal theory is that certain approaches work for certain groups of patients. Those patients stay with that doctor and the doctor's "truth" is that the protocol works extremely well. But what's missing from the picture is that for those patients who don't respond, they leave that doctor and find another one until they find something that works. So there may be nothing wrong with the doctors you've been working with, their approach just wasn't right for your child.

We've never used clindamycin but DS was on rifampin for a year as part of his lyme treatment (in combo with zith and sometimes augmentin). We never had any issues with yeast or any other issue. It does turn your urine orange when you first start, but that goes away. It's best absorbed on an empty stomach.

Leckman is a good guy. He's directly involved with the NIMH IVIG study. He is a big name in the Tourette's world and was once on the fence about Pandas and collaborated in research studies conducted by the two close-minded, ego-driven Pandas naysayers, Kurlan and Singer. However, in recent years, he has come to embrace Pandas and is now a supporter.

The full text article is available for free here http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2812%2962129-1/fulltext#tbl2 tho you may need to create an account first (takes 1 min). I didn't read the article in it's entirety yet (way over my head). But what they did is identify snps that seem to have a statistically significant appearance among those people who suffer from one of five mental disorders, schizophrenia, bipolar, depression, ADHD and autism. They conducted a meta-analysis - a review of multiple studies that had already been done on the genetics of these conditions. They identified 14 snps in particular (table 2) and 4 that seemed of particular significance (table 1 - rs2535629, rs11191454, rs1024582 and rs2799573). The last two are on the calcium blocking genes CACNA1C and CACNB2. Two of these 4 snps are reported in 23andMe results. What the excitement seems to be is that 5 disorders that have been classified in the DSM as distinct disorders based on symptoms may instead share a common biological cause. It seems to be part of the emerging paradigm shift in how we think about mental illness and supports Tom Insel at the NIMH when he says the DSM is a faulty way to look at/treat at mental health. The study reveals snps that have nothing to do with calcium channels but I think the excitement was that some snps are associated with calcium channel blocking and we already have calcium blocking medications and perhaps these can be used to treat a biological glitch in the same way they treat heart disease. That perhaps they can be more effective at curing the root of the problem (in the same way taking methylfolate helps you bypass a genetic MTHFR roadblock) rather than using an SSRI or stimulant or whathaveyou to mask a symptom. I didn't see anything mentioned in the paper about the immune system per se. Ironically, of the snps that are in 23andMe, my kids were heterozygous (+/-) for the ones I found and I was hetero or homozygous. So I actually have a higher risk for schizophrenia/bipolar than they do - and yet as nutty as I am, I thankfully don't struggle with either disease. So it goes back to genes as raising your statistical risk rather than being destiny. Yet because of the link between this and heart disease, it does have me curious about switching my BP medication to one that's a calcium channel blocker.... Great find Norcalmom - thanks for posting!

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.

Queen Mother - I didn't know that about glycinate - I've been giving mag glycinate for a long time. Getting ready to re-order so this comes at a good time. Going to have to re-read Yasko's book - last time I read it was before I had all our results back and some of the finer points were lost on me. But only 50-100mg? The RDA for magnesium is 200mg for kids and 400mg for adults. How come so low? Are you giving magnesium and zinc apart for a reason or just how it works out? I give both together (some zinc in a.m. and some zinc at bedtime with mag because two of us have pyroluria and need extra high doses of zinc in multiple doses). I also give probiotics at bedtime so they can go thru the stomach when acid is lower and hopefully sit in the bowels a little longer. Antibiotics are thankfully out of the picture at the moment, but I'd give those at breakfast and dinner. Dee - the only advise I've come across re: magnesium is to not give with certain abx, as Lynn said, and that it's less effective to take at the same time as calcium (which makes you wonder why cal/mag is such a common combo supplement). Regarding glycine and gaba, I found this article pretty helpful, if a little technical. http://www.acnp.org/g4/gn401000008/ glycine is apparently one of those things that's both good and bad, depending on where in the brain playground it's playing.

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!

Dr K, like many doctors, treats based on what he sees as "true". If most of his patients do IVIG and get well and never come back, his truth is that IVIG cures them. What he doesn't see is when IVIG doesn't do the trick and those patients move on to other doctors, other diagnoses. From what I understand, he does not feel Lyme is a problem and even if he did test, he'd most likely order a standard Western Blot, which is not reliable. If you feel lyme is something to consider, then doing an Igenex test and/or consulting with an LLMD (lyme literate doctor) would be a better avenue. Mycoplasma is another common infection our kids struggle with. Being new to this forum, I'd browse through the helpful threads pinned at the top of the forum page and then browse through older posts, searching on terms like IVIG, mycoplasma, lyme testing, PANS, co-infections... and get a feel for things beyond strep. As others have said, knowing/treating the underlying infection is key to whether IVIG will be effective in the long run. It's worth researching and testing before dropping $$$$

Most of what I've read is that Gaba supplements may not make it to the brain, may not cross the BBB. But rather, the Gaba supplement may calm the gut. I don't really know. A few threads have discussed the wonders of Melissa, which is Gaba-ergic and supposed to increase gaba in the brain. I tried it for my son with unpleasant results, have no idea why. Is a Gaba supplement a methyl donor? IDK, but I set it aside. But everyone has a different response. Whether the Gaba is helping his brain or his gut or his little pinky, if it helps, enjoy it. Like you, I've seen things peeter out and know how depressing that is. You can also look into foods that are supposed to help increase gaba. Scroll down to the middle of the heartfixer document for a full discussion, but here's an excerpt: http://www.heartfixer.com/AMRI-Nutrigenomics.htm#Glutamate%20%E2%80%93%20GABA%20Imbalance%20%C3%9E%20Excitotoxicity We can restore glutamate-GABA balance by: 1. Addressing CBS up regulation/BHMT down regulations to decrease alpha-ketoglutarate production. 2. Decreasing intake of food precursors of glutamate (see list below). 3. Supplementing with GABA 4. Copper inhibits conversion of glutamate to GABA by glutamate decarboxylase so avoid copper excess, or better stated, an imbalance between copper and zinc. 5. Calcium is involved in glutamate toxicity, so supplement with magnesium to keep calcium in check. Interesting point in #5 and your re-starting magnesium....