LNN

My son has the same sense of "injustice" and will fixate on being "wronged" - won't/can't let it go. While it is worse when he's flaring, it's part of his personality and always will be to some degree. Fortunately, my son isn't large in stature - about average - and doesn't get physical "revenge" but he will fume about it for way longer than most. A once or twice supplement dose of Gaba or tryptophan helps a bit. Deep breathing. Mostly what really helps is feeling understood. I totally understand your frustration and agree that a better solution has to be found to not punish your son. It sounds like the other boy may have been baiting him, just "begging" for your son to respond predictably. Maybe try to help your son see that by reacting so severely, he's letting the other kid "win" and manipulate your son. He probably won't be able to be objective about it, but maybe the change in perspective and your son's competitiveness will help him not want to be "played" by the situation. Being devil's advocate, I can see that the school needs to be cautious in letting your son, with his anger over the situation, back into the same situation next week. However, I also think that Dodgeball hardly encourages the kinds of behaviors that are politically correct these days. It's pretty much picking on the weakest, bullying with a few rules as window dressing. It doesn't belong in the school at all IMO. Your son was as much a victim (glasses bent) as an aggressor. Perhaps the best solution is to stop Dodgeball for everyone and have them do a more productive, less aggressive activity. Still physical but less prone to individual grudge matches. Volleyball, floor hockey...IDK. I agree with rowingmom. Maybe back down on dosing of the mito cocktail, more detox...and maybe let him stay home next Friday or take him out for lunch or a bagel while the rest of the class goes to PE. Turn it into something good instead of a punishment?

I'm so sorry. You've been thru way more than any mom should have to cope with. Any changes in the past two days - better or worse? Any blood work clues? Azith+augmentin didn't do much for us, but DS was a lyme story. So my experiences with combo abx is with lyme not strep. Given the anorexia history, have you ever looked at zinc/copper balances? Excess copper can cause mercurial temper issues and zinc deficiency can play a role in some cases of anorexia. Just tossing out ideas - and cyber hugs.

Dut, Please don't misunderstand - I think gut health is enormously important and should play a significant role in a treatment plan. I'm sorry if it comes across otherwise. It's just that I don't have a good understanding of this particular situation and how probiotics alone have put Pandas into remission - if it has. Or is it that this family is just "putting up" with symptoms without doing the interventions most of us resort to. It's just been hard for me to put this information into context. For my own situation, pre and probiotics have never been enough to put the wild animal back into the cage. In the past, when I've asked TGB about his own experiences, he's been vague and while certainly no one owes me any personal revelations, it makes me uncomfortable sharing personal information with someone who hasn't been willing to reciprocate. I don't know how to take the information about microbes without knowing how it's helped his children. My intent was not to make others uncomfortable. Only to alleviate my own discomfort in not knowing anything about someone I'm having a conversation with. Most of us are more wordy when it comes to explaining our own situations. I truly believe in the importance of gut health. Just not to the exclusion of other things. But I apologize to all if my tone or line of questioning seems out of line.

Lilly - most of these members are no longer on the forum. This conversation was from 3.5 yrs ago. I don't know where all of them went. Two are still here so perhaps they will chime in. One went on to pursue lyme treatment and one is now on a facebook support forum but her daughter is not cured. Not at all discouraging you from pursuing the ideas on this thread. You just may not hear back from the people who were the main posters as they're no longer here.

From personal experience, I'd consider trying either the lemon balm (have no experience with that) or the change in methylfolate/methylB12 dosing but not both today. Change one thing at a time or you won't know what caused what. If you opt to put the lemon balm aside and go the methylation route, I'll just tell my story as something to go by. When my DD was flipping out b/c I'd been giving too much methylfolate and no methylB12, here's what I did to "fix" it: Day one - gave 50 mg niacinamide (1/10 of an opened capsule) and hid it in some food. This helped calm her w/in the hour and it gave me a little confidence I was on to something. I did not give any methylfolate or methylB12 that day. Days 2-6 - no methylfolate, no methylB12, no niacin. Kept all other meds/supplements the same. Avoided fortified cereals, multi-vitamins or anything that might have regular folate in it. During this time, her mood drastically improved and she became steady and happier. Day 7 - her mood started to get a little up and down. I saw small signs "it" (bi-polar) was coming back. So I re-started methylfolate - one drop of yasko's methylmate B, which is 67mcg of methylfolate. Plus 1000 mcg tablet of methylB12 - dissolved both into a 5ml medicine cup with water. Had her drink it. This significantly reduces the absorbability of the methylB12, as I did not have her keep it under her tongue. So for anyone thinking "holy cow, that's a lot of B12 compared to methylfolate," I think much less methylB12 is actually getting into her system with this delivery method. (for reference, DD is 8, 53lbs) Day 8 - no methyl supps Day 9 - same as Day 7 We stayed at this every other day dosing and have stayed at this for 6 months, from August until now. Usually, January is an awful month. For the past 4 yrs, she has dissolved into a puddle of irrational, emotional mess. One January, her CamK tested 179 without any obvious signs of infection (tho she may have had lyme - we treated for it but never had any slam dunk labs to confirm, just a C3d in the 90s - 9 times higher than normal). This January, she was stable the entire month, only pulsing zith every other day (more to protect DS than her and also to not test fate). So everything points to proper methylation as being her answer. I'm not saying this is your DDs answer or her only answer. You have possible lyme and strep that still need to be addressed. I only put this out there as a reference for what we did when we were trying to isolate the role that methylation/MTHFR played in our story. So if/when you decide to test this theory, only change one variable - and that's the dosing of the methylfolate/methylB12. Leave the lemon balm for later if needed, or do only the lemon balm and not the B vitamins. Just not both today. The niacin is used only as a mop to help clean up the excess amount of unused methylfolate you may have been giving. It isn't used as part of a daily therapy. Too much niacinamide is not good for those with MTHFR (tho everyone needs some niacinamide). Because your DD is homozygous (mine is hetero), she may need more than my DD in terms of dosing. But I'd suggest using one drop every other day for a week, maybe two and only then consider doing one drop every day for 2-3 weeks, then increasing again if needed. If you tip the cart too far the other way and you see bad stuff again, break out one dose of niacinamide as an "antedote". Good luck!

I would also like to hear more of your personal story if you're willing to share. It does seem unique. But you have left much unsaid and I don't want to make any more interesting assumptions.

If she's homozygous, methylation could be a big part of the bipolar. Try some niacin - one dose. Open a capsule (I can only find them in 500mg capsules). So I open one up and sprinkle 1/10 of it onto an oreo or applesauce or yogurt... Then maybe stop giving her methylfolate until you get some methylB12 (can get it on amazon or local health food store or a GNC or a Vitamin Shoppe). When you do re-start methylfolate + methylB12, start low dose - like 60-100mcg. Often when you re-start a system that hasn't been working well, you stir lots of stuff up. Starting low helps reduce the turmoil.

ThinkGut - curious about how probiotics and/or gut bacteria help your own children with their Pandas issues. This is obviously a passion for you, seemingly to the exclusion of other treatments. I assume that you practice what you preach in terms of exposing your kids to good germs and healthy diet and yet this doesn't seem to have protected them from Pandas. Can you share what else you do treatment wise and how your children have done with these treatments?

How much are you giving and how often? We use 1000mg odorless garlic - one capsule/day at dinner. The first week, both kids got sillier and impulsive, a little quick to anger. Then it resolved and we've had no symptoms of yeast infection in a year since starting it. Are you giving probiotics? When did you start the zith? Do you see any pattern to the rages (e.g. lyme has a life cycle of 3-4 weeks, so some parents see an increase in symptoms one week a month). Do you now her MTHFR status?

I buy SourceNaturals MethylB12 http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1362078441&sr=1-1&keywords=source+naturals+methylcobalamin+vitamin+b-12 - and you're right. I meant mcg not mg. Sorry!

I get the methylfolate from Yasko's holistic health site http://www.holisticheal.com/methylmate-b-nutritional-supplement.html. Someone here pointed out that it contains rosemary, which can lower your seizure threshold. But my DD, who just had an EEG to rule out seizures (due to a bad reaction to cold meds/antihistamines), hasn't been effected by it. I can't recall if Lynch has a liquid or not. We use one drop, which is approx 67 mcg. Some people like to use the combo of methylfolate plus methylB12 in one pill but as you've said, you can't cut up a pill that small. The liquid has worked well and lasts forever - something like 1400 "one drop" doses - so at every other day, it will probably expire before we use the whole bottle!

Can someone explain why Dr T seems to be pursuing this with his patients? I gather it's to explore mitochondrial disease but not sure why he feels this is an issue for Pans. Is he just testing a theory? Do your kids have many symptoms (multiple organs) of mitochondrial issues? What treatment is he recommending if your results show something? Mitochondria is something that interests me since my DD often complains about fatigue that isn't showing up as a virus or anemia or infection in her blood work. Out of desperation, I started giving her CoQ10 a month ago and now she rarely complains of fatigue. But aside from the CoQ10, not sure what you do to treat mitochondrial issues. Can anyone shed some light?

I just re-read your post from 2/10 - with possible lyme and/or strep still in the picture, I'm not sure you'll see benefits from a psych med, yet I have lived in your shoes and understand the feeling that you need to do "something" - especially when your spouse starts pressuring you. If you do decide to use a med, insist that you start at a dose that's half the usual starting point. As you suggest, the meds may treat a symptom, but they won't be treating the underlying cause and it will be hard to know what's what. By starting low, you'll be better able to eliminate the possibility that the med dose is causing problems by being too high. Pans kids tend to need much less dose-wise. You say you're giving methylfolate but I don't see methylB12 (methylcobalmin) in the list. The two need to be given together in order for the methylfolate to do its thing. Have you tested for MTHFR or just giving it on the chance she may have a mutation? My daughter had many of the same reactions you describe - the rage when I brushed her hair and it hurt, the not wanting me near her yet not wanting me to leave, the provoking of fights, the freaking out when we urged her to get going in the morning, the daydreaming - she was just awful to be with. Yet she needed me so much. She was out of her mind with anger and irrational reactions. Turns out the dose of methylfolate I was giving her was too high and I wasn't giving methylB12. I used this case study as a guide http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ and gave my DD 50mg of niacinamide hidden in the creme of an oreo (so much for health food). It calmed her rage in about 45 min. That's what convinced me to stop her methylfolate for a week and then re-start at a much lower dose. That seemed to do the trick for her and she's now very stable at 67mcg methylfolate + 1000mg methylB12 every other day. Here's her story http://www.easytolovebut.com/?p=2782 Not saying this is your answer. Only that sometimes you might be giving the right things but in the wrong amounts. And you may still have active infections. So if your gut makes you hesitate abut psych meds, talking yourself into them may not be your only option. That said, I am not anti psych meds. I think quality of life - for the child and for the whole family - trumps "natural" vs. pharmaceutical ideology. I just think that ultimately, the greatest relief comes from finding and treating the root cause. But in the meantime, you do what you need to do to get thru the day. As for vyvanse - my son (not my bi-polarish DD) started taking PS100 (which is 100mg of phosphatidylserine) plus a combo of Omega 3 flaxseed oil/Omega 6 primrose oil (he needs both) - which is similar to what you find in vyvanse. It has helped his focus and demeanor. But not sure if it would help with your bipolar behaviors. You may also want to treat for yeast more aggressively - do the garlic consistently - and make sure you're using a good blend of probiotics. You can google grapefruit seed extract for yeast as well. An increase in bad behavior for the first week would actually be a good sign you're hitting yeast (yay - I bet you're thinking - just want you want!). And I'd still pursue the chronic infection piece. You can ask for a C3d immune complex blood test to look at how activated the immune system is - it won't tell you what the infection is but it can tell you how hyper the immune system is or isn't. Also consider mold. Last summer when DD was out of her mind, I found mold in the bottom of all our window a/c units and her allergies were thru the roof, which also made her manic. Sorry - I know how hard this is. Hang in there. It's often a ball of string that needs unraveling, not one quick answer. But you'll get to the bottom of it. Don't stop believing that.

Lyme would be an obvious one and you'd want to not just rely on a standard western blot. But you've been around long enough to hear that whole discussion so I'll assume you have the info you need/want in that regard. I sometimes have joint trouble (hip and knees) that go away when I remember to take a 2mg copper supplement. I take a zinc supplement for pyroluria and so need to be more mindful of my copper than I am. I'm a bad patient. For ha ha's you can google a little on copper and joint pain then maybe ask him to check your copper and zinc levels to make sure the levels are both good and the ratio between zinc and copper is right.

I wasn't referring to any strains listed on the link. A few years ago, I read a book on the specific attributes of various probiotics strains. I wrote down the names of the ones the author singled out for immune support (L. Reuteri) and other issues that seemed relevant to the things we were struggling with. I then went online and into the health food stores and of the half dozen strains I was looking for, L. Reuteri was the only one I could find, and it was in a low dose - something like 5-8 billion CFUs. I now just use a variety of strains and rotate brands. My only point was that there's "ideal" and then there's "real life" and sometimes those are two different things.

I don't have any experience with SSRIs but what Nancy writes makes sense. What dose of Celexa? Can it be lowered? Regarding the natural remedies, SAMe works really well for some, bad for others, depending on your methylation and genetics (don't ask me which ones - I've only gotten to the point that I know epigenetics play a role, but not which genes). We tried inositol - took the edge off anxiety but didn't help OCD. N-acetylcysteine (NAC) has helped in some studies but doesn't help my kids. Regardless of meds or supplements, ERP is a very helpful tool. It's a lot of hard work, but it does give the kids some sense of control and it teaches skills they'll have for a lifetime.

We use it here for anxiety (tryptophan) and depression/focus (tyrosine). My DS10 takes 500mg of each in the morning and my DD takes 250mg of each only on days when she feels a little unsettled. Tryptophan converts into serotonin and then into melatonin. So if you take it at night, theoretically it could help with sleep. We use it in the morning to help with daytime anxiety. It does not help my DS with his OCD. Some say NAC helps with OCD but it doesn't help my son in this respect.

I found this article by Yasko and Mullen today that might give you an overview of things to think about. A bit dry and technical, but I know you're up to the task http://www.psychiatryburbankca.com/wp-content/uploads/2012/10/Gastrointestinal_Balance_and_Neurotransmitter_Formation.pdf

Wendy - just one caution about using ALA as a chelator. While I'm no fan of Cutler (I think he's pompous), I do agree with his general thinking in terms of chelation approach, minimizing inflammation and in avoiding ALA until you're several months into active chelation. ALA crosses the BBB while DMSA, DMPS, EDTA do not. Cutler says (right or wrong) that if you use ALA too soon and your body has more heavy metals on one side of the BBB than on the other, ALA will chelate the metals onto the side that has less heavy metals in an effort to find balance. So if the body is more polluted than the brain/CNS and you use ALA while this is the case, the ALA will move the metals out of your soft tissue and into the brain, doing the exact opposite of what you'd hoped for. I'm not enough of a scientist to know if what he says is completely accurate or if there are other factors to consider. But it did scare the heck out of me enough to think it's worth passing along fyi. If you suspect metals, best to work with an experienced doctor and use prescription chelators first and only consider ALA after you're through the worst of it. Cutler likes ALA a lot - but only once the heavy lifting is completed. (BTW - he hates chlorella b/c he feels its binding is too weak and does more harm than good. He is also not very find of Klinghardt. So take it fwiw but in this particular aspect, I'm inclined to follow his advice).

I give 500mg once a day in the morning for a week or two - until the sores or illness symptoms disappear plus a few days for good measure. DD8 is 53lbs. When you google, you can find recommendations for 2-3 doses per day of 500mg per dose - for an adult. But I stick with one/day due to her size and the fact that she's so prone to mood issues. Lysine can eventually have a side effect of increased anxiety and GI upset. I don't see it at the one/day 500mg dose but I've always got my antenna up - don't want to wait until after she flips out to realize I gave too much or for too long. So I probably under-treat, which probably isn't good either. PTSD on my part. I'd try 1/day, maybe 2-3 weeks and see what you get. If no side effects and you still have signs of virus and you feel it's helping, you could continue longer. When DD had EBV and was only able to go to school half days last winter, she took it for 3 weeks steady (the first few days I think I gave 2 doses/day) and then after 3 weeks, I think I tapered to every other day for an additional 2 weeks.

FWIW - l-lysine is my go-to antiviral. Helps DDs canker sores and cold sores. Hope you find answers - keep us posted.

Ok, I'm an idiot. Try this link https://www.freeconferencing.com/playback_ow.html?cid=conferences%2F-39-12282-17-65-6786-17-65-675860100-31-84-70-26-119-122.mp3&e=1392796800000&cn=94-43-28-63 (fwiw - Mullen's website does have some e-books you can download that seem interesting as well)

The problem is that often, what's good for the goose isn't good for the gander. Nancy's son does really well with NAC. It's horrible for my daughter. Some do well on silymarin for liver support due to heavy antibiotic use, some are allergic to it. Some have genetic mutations (MTHFR, COMT, HLA-DR, SUOX....) that should guide both what supplements you use or avoid and in what order you should introduce them. It's a very individual puzzle. I think we share what works for our kids but always with the caveat that this is throwing spaghetti at the wall to see what sticks. You could develop a database and I think some of the Pandas researchers have discussed the idea. But I think it would need to contain a lot of personal info that might not be appropriate for a public forum.

We too use doctors who don't accept insurance. The reason is that they spend upward of 45 min with you and insurance will only compensate them for 20 min. They do however, give you the insurance claim form you can submit yourself and get partially reimbursed. But IMO you get what you pay for. These issues are too complex and visits are too far apart (2-4 months apart for check-ins), to do things justice in 20 min. Astrid - I'm in CT as well and can give you additional doctor names in the greater Hartford area if traveling is an issue. But none take insurance. While I haven't seen Dr O'Hara, if we weren't overbudget on medical bills already, I'd be in her waiting room in a heartbeat. You will save lots of time getting to the heart of the issue and spare your family from suffering and frustration with non-believing doctors by seeing an experienced doctor, even if you have to pay out of pocket and seek partial reimbursement from your insurance company. On a separate note, you can google "trichlomania + n-acetylcysteine" (also known as NAC). NAC is an amino acid, a supplement widely available at your health food store or on amazon - that may hold promise for treating trich in some people.

They posted this link on the FB MTHFR Support page yesterday and I thought it was a good, short (12 min) intro on glutamate. It's by Nancy Mullen, a well respected methylation doctor (http://www.nancymullanmd.com/). She's not the best speaker and I'll have to listen multiple times, but she hits on a number of things that will interest people here, including NAC, Gaba, methylation, vitamin K and calcium.