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NAC can serve many functions but the primary two for our community is that some studies suggest it can reduce OCD symptoms in certain patients and it is also a mucus thinner, which makes helpful for weakening biofilms, which are slimy colonies of bacteria/viruses/lyme that hide in the film and can't be detected/attacked by the immune system. NAC can also support liver function, which is helpful for those on long term abx. That said, not everyone can tolerate NAC. It makes my DD flip out with anger and mood swings. Found out that's because of a specific gene mutation. I took it for the winter months to help with a chronic cough - greatly reduced the mucus and cough. But during this time, I became significantly depressed - not something I'm prone to. I had no energy or enthusiasm, no ability to do minimal housework or do any but the most pressing projects for work. Then had a physical and my liver enzymes were very elevated (in the 70s when above 50 is elevated) and I had gained weight. I stopped the NAC and my liver enzymes dropped to 20s w/in 4 weeks and lost some weight. The depression rapidly ended. Makes me suspect I have the same mutation my DD has (which is CBS). My DDs negative response happened w/in 2 weeks. My response was less obvious - I never would've suspected NAC. Yet others here have had good experiences. I would ask your doctors why they've recommended it.

Bees - when I stopped the Enhansa, a few people encouraged me to push thru, even at a lower dose, or to try it again over the summer. They felt that what I was seeing was a herx and evidence that something was being killed. I have no idea if this is true or not. I know that my son had mild OCD for two months, with no other symptoms other than mild hyperactivity, negative for yeast, no signs of any infection - and yet he's never had "just" OCD - there's always been an infection trigger. So you could argue that this was indeed a herx response. However, I can also argue that Enhansa isn't the right weapon for my son because of his MAO status and curcumin being an MAO inhibitor. But here's how I looked at the problem - taking Enhansa took an 70 degree partly sunny day and turned it into a cloudy 50 degree day. Now, in February, at the end of winter, I'll take a 50 degree cloudy day any time. 50 is a great improvement over 20 degrees and snow. But we were in May weather, where going back to the 50s sucks. I don't want to take out the coats again. I waited a long time to wear short sleeves, where we only have to deal with some mild OCD - not eager to go backward. Rather spoiled brat on my part, but we've been at this for almost 5 years. The family is entitled to 70. Does that make sense? So instead, because my current view of the world is through methylation-colored glasses, I opted to supplement with copper (which I should've been doing anyway b/c of our high zinc supplementing for pyroluria). Copper supports MAO, which is the opposite of what curcumin does. When we saw the OCD start to wane, it was like finding a way to get to 72 degrees - still partly cloudy, but not 50. Now, 2 1/2 weeks later, the OCD has dropped from a 4-5 to a 2. Not as immediate as I'd hoped, but the right direction. Yesterday, I googled a little and see that copper has certain antifungal, antimicrobial properties. This fits nicely with my little view of the world - I'm giving something that supports methylation and that may be killing the thing that was triggering the OCD. Two months from now, I may find I was wrong, but for now, this theory is working for me. So back to your question - the need for diflucan and the inability to hold onto gains without it sure does suggest some sort of fungal infection. From what I understand, curcumin/Enhansa could be great for this and be just the thing your son needs. Or...not. You won't know until you try (tho you may want to try it now, before the IVIG, or wait until you're done with the post-IVIG plan). If the Enhansa isn't right for him, just know there are other options and you'll find them. This is the link to Enhansa http://leesilsby.com/enhansa-homepage It's not expensive and worth a try, IMO. If it doesn't work, post about it and maybe by then, I'll have more ideas/perspective. JDude - not ignoring your question - I just don't have an answer for you.

To my knowledge, there is no "Pandas gene" - I suppose Dr T may have zeroed in on some genes he's seen frequently occur among his patients, but I know of no research that has identified one or even many genes that play a role in Pandas. Heck, after almost 20 years, we can't even "prove" Pandas exists, let alone be able to declare with any confidence that certain gene(s) are the cause. I would bet that if you polled all of us who've done 23andMe, more than 90% will have at least a COMT or MAO snp mutation - these are two genes that control the rate that serotonin and dopamine are degraded/used. But that hardly means these genes cause Pandas. The are implicit in many disorders involving neurotransmitters. Sorry, he says something like this and I lose a lot of respect. (Sorry D's Mom - I mean no disrespect to you and certainly don't want to make you feel like I'm attacking you - his comment just gets my undies in a bunch).

What is the "Pandas gene"????

Because of the impact of flagyl, I have to ask if you've looked into lyme. But aside from that, the next thing that strikes me if the melatonin. Melatonin gives me really weird dreams and restless sleep. I don't like it at all. I feel "off" the next day - maybe because I didn't sleep well. In my methylation readings, I came across something about certain mutations making melatonin a bad fit for some, but I doubt I could find it again. So one thought would be to wean off melatonin and see what, if anything, happens. However, don't just stop melatonin cold turkey. If you've supplemented for awhile, your body makes less of its own. So you need to taper off a supplement and signal to your body to start making more of its own again. Not everyone can tolerate D either, but since his issues are around waking, the melatonin was my first thought.

Here's my own experiences for doctors we've seen and my impressions from others regarding doctors we've not seen. Dr K is a pediatrician who knows Pandas well and will be very helpful to those who are dealing with strep only. He is fairly conservative in his use of antibiotics in that he believes you give abx (antibiotics) for a certain period of time (few months?) and a short prednisone burst (5 days) to see if there's clinical evidence you respond to things that fight infection and inflammation. If you still have symptoms after a few months, he's inclined to pursue IVIG but feels you should only do it once, maybe a second time 6-12 months later if you need it. I don't believe he feels Lyme is an issue and will not test for it or treat it. (from what I understand). Dr L is a neurologist who knows Pandas well, will treat with long term abx if warranted, will pursue Pex or IVIG if she feels it could help (done at hospital) but does not advocate for multiple treatments or if multiple, that you give a length of time in between, much like Dr K believes. She does recognize other infections can be triggers but does not treat lyme. I respect her a lot, she will give you her complete attention and will not rush you through an appt. but she is impossible to reach once you leave her office and requires a lot of energy/follow up on your part. Dr B is an immunologist and a Pandas specialist who I believe will treat with either long term abx or IVIG. But he believes IVIG should be given repeatedly every 8 weeks. He does recognize lyme and co-infections are a big factor for some kids and he will test for/treat less complicated cases. He refers more complicated cases to an LLMD. He accepts insurance but because of that, his practice has grown considerably and you may see an assistant (nurse practitioner?) once you're an established patient. IVIG infusions are done in his office. Because he accepts insurance, his visits are more brief than some other doctors. From his current patients, I understand it can be difficult to speak with him outside of an office visit - you can use email but access can be frustrating and require some effort on your part. Dr T is a neurologist and Pandas specialist who will also test for/treat mycoplamsa but I believe he relies on standard lyme testing, which is not reliable IMO. I do not believe he has rights at a hospital to do IVIG but maybe his current patients can clarify how IVIG works through him. I believe he is in the camp that feels only 1 IVIG is generally sufficient. He does support long term abx use. He can be very difficult to reach for followup questions. He has recently been exploring genetic testing but I don't know if that has altered his treatment protocols. Dr O - is an MD autism specialist (DAN doctor) who also understands/treats Pandas but with abx. I don't believe she uses IVIG. She, more than the others, will make supporting the gut and the body's systems (e.g. methylation) a primary part of treatment, along with abx. She recognizes lyme as a possible issue but it isn't her specialty and if lyme is one of your infections, you may need a second doctor on the team. LLMDs - Lyme Literate MDs - as a group, they believe in long term abx, often using more than 1 abx at a time, to treat stealth infections. They, in general, will consider/treat things like mold, fungal/yeast infections, parasites, lyme co-infections like bartonella and babesia, believe in diet changes and the use of supplements and herbs as a secondary (or maybe primary) method of treatment. They can get a little "out there" with their ideas and approaches but they see this as a long haul journey and sometimes have ideas that conventional docs might scoff at but have been exactly the thing certain kids have needed. Like Dr O, they tend to look at the whole body as a system and will emphasize diet and environmental aspects along with things like abx. I believe all of the Pandas docs support/will order the Cunningham labs. Some LLMDs may. Dr O and the LLMDs are most likely to look at metals, copper, methylation issues. Dr T may as well but I have sometimes questioned his approach on this topic. Doesn't make me right. Just giving my opinion. I have yet to find any single doctor who can meet all my needs - no Prince Charming. Some of us use more than one doctor on the team for that very reason. Generally, no one is going to explore all of these issues. But some may be more willing to order tests on your behalf and support you as you try to connect dots yourself. No one is going to drive the bus though, except you. You are going to have to do a lot of research on your own. With lyme in the picture, I've had the best luck with our LLMD. He's been able to do the most for my kids. We thing lyme may be out of the picture now but he'll continue to be my son's Pandas doctor for as many years as we need support. If I had funds left, I'd probably add Dr O as our second doctor. Others here will have different opinions. Some absolutely love one doctor or another. it's like dating - find the right match and life is good. But since you're looking for someone who will cast a wider net beyond pandas, it sounds like you might be best served by an LLMD (good ones can be found between DC and CT) or Dr O.

So you have IgM 41 IND, 58 ++ and IgG 31IND, 39IND, 41++, 58+ - most LLMDs would look at his symptoms plus these labs and be willing to treat for suspected lyme. Augmentin is one of the abx used for lyme (so is rifampin - esp for bartonella). But alone, it won't be effective. Lyme bacteria can take three forms - the shape of a spirochete - which is susceptible to extra-cellular abx like augmentin, an L-form which is susceptible to an intracellular abx like azithromycin, and a cyst form, which is impervious to most abx, tho tindamax and flagyl can make a dent in it. In addition, lyme likes to colonize in something called a biofilm - a city of various bacteria and viruses hidden from the immune system in a mucus film - plaque on your teeth is a biofilm. So using one abx will not get the job done. You need to use a combo of abx and rotate them in a game of whack-a-mole. Herxes can last a few days or many weeks. You can either stop the abx for a few days to see if tics lessen or you can search this forum for "detox" and read up on various supplements that can help the body rid itself of the toxins being released by dying bacteria. Or slug through it. I doubt that the abx is making the immune system out of whack. Based on your labs and response to abx, it sounds much more likely that this is a herx of some sort or that the augmentin alone isn't enough and the tics are a response to untreated lyme. We did the Cunningham test on both kids when it was a research study and "only" cost $400. It was helpful at the time and made me feel less crazy. But from a treatment perspective, my LLMD (lyme literate doctor) considered it interesting but didn't change his treatment approach. Now that it's $1000, if you're going to pursue lyme treatment, I'd save that money and put it toward your initial consult with an LLMD. Treating lyme is not cheap! But that's only my opinion. If the test were more affordable, i might feel differently. it's just a lot of money to cough up. Can you post the initial of the doctor in CT? There are three I can think of. I'm guessing it was Dr B, as he's a Pandas doc who sometimes treats lyme. But while some here will disagree with me (maybe strongly), he is not an LLMD and he would not be my first choice for lyme. Dr J and Dr M in CT would be much better choices IMO. There are a few LLMDs closer to you and a few members here will have better input on them. I've read good things about this nurse practioner http://www.gingersavely.com/About-Dr--Savely.html but I don't have any direct experience. BTW - most LLMDs don't take insurance, but like Dr L, they give you the form you need to submit your own claim to your insurance co. In most cases, you'll get at least a portion of your costs covered.

For TS, I believe you need both motor and vocal tics: Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year. I also believe the definition says if you go more than 3 months without tics, it isn't TS but is classified as a transient tic disorder. The reason I always balked at a TS diagnosis for my son (who since proper treatment for Pandas/lyme - goes 18 months or more w/o tics) is that I didn't want to use a medication or supplement on a long term basis for a transient symptom. I also wanted to make sure we were getting at the root cause. TS treatments focus on managing symptoms, not eliminating the trigger. Like Dawn, our tics always morphed. Some showed up more than others, but it was always a changling. And they were movements that were partially OCD-driven - he had to do movements to "feel right". Very hard to tease out what was a tic and what was OCD. In the end, the label depends on what happens when you treat. IMO, if you treat with antibiotics and the symptoms lessen/resolve, it's PANS. If they don't, then you need to look for other triggers like mold or toxins or diet. If that doesn't help and you've exhausted all other options, then and only then would I resign myself to a TS diagnosis. But just my opinion.

Susie, you may find this article helpful (it's 50 pgs long - scroll down past the top diagram). http://www.heartfixer.com/AMRI-Nutrigenomics.htm I copied the entire thing into Word. Then I got out my kids' reports and deleted the gene info for genes that were normal, leaving only the ones they had issues with. I also deleted the fluff at the back like the recipes. This gave me a 12 page Word doc for my son and a 20 pg doc for my daughter. I then read thru each and highlighted the suggestions I found most pertinent - avoid this, supplement that.... I ended up with a customized road map of diet/supplements for each kid. We didn't use Yasko but I've seen her list of supplements and agree it's totally unrealistic and unaffordable. I do buy certain supplements from Yasko's company Holistic Health when I need a specific form/dose of something. But you need to be realistic about this stuff.

Here are two articles that talk about abilify http://thoughtbroadcast.com/2011/09/13/how-abilify-works-and-why-it-matters/ http://whatmeds.stanford.edu/medications/abilify.html It's said that "It is a dopamine partial-agonist meaning that Abilify can stimulate dopamine receptors when little dopamine is available and block dopamine receptors when there is too much dopamine present causing the receptor stimulation to become more balanced. Abilify’s effects are often dramatic and seen within a few days, but it may take weeks to work in other cases." But the first article explains that no one's totally sure how it really works. However, it seems to be well tolerated, it seems you'd be able to tell if it was good or bad for him in a few days and since he's in such a bad place, it seems like it may be worth a try. FWIW - I've never seen any effect from the EPO - good or bad. I give it because a few articles say you should. Hopefully you won't see any negative response. On the 23andMe results - I don't want to sound like I'm defending the company. I only find it more helpful because it tests so much and it affordably tests the genes I needed to look at for methylation. Their customer service is apparently lacking, they are hard to get hold of - but I've never had to interact with them, so I don't have firsthand experience. On the accuracy, I read one mainstream article on Yahoo that gave an example of how it inaccurately predicted her hair color. 23aandMe gives you several reports that look at a collection of genes and "predicts" your odds for certain conditions - like whether your risk for heart disease or lung cancer is higher than the general population. There's no single gene for hair color, heart disease or lung cancer. What the report does is look at the overall status of a group of genes and compares it to the results in its database, then makes predictions. It also predicts genealogy/ancestry, etc. So some people report that those predictions are wrong. I found the reports vague and not all that helpful but that wasn't what I was using it for, so it didn't bother me that much. Apparently, Labcorp is the lab that does the 23andMe testing. Here's an article from 2010 on some errors - I'd like to believe that quality control has improved in 3 years, and as the article points out, all labs make mistakes. But it's something to bear in mind http://scienceblogs.com/geneticfuture/2010/06/07/sample-swaps-at-23andme-a-caut/ My kids' results were consistent with family history, eye color etc, and their 23andMe results for MTHFR matched the tests we'd done for this with another lab, so it didn't set off any alarm bells for me. Courtagen has apparently been offering genomic testing for less than a year. Both companies use/are CLIA certified labs. I'm sure they both make errors. Caveat emptor. Finally, on zinc, different forms are more easily absorbed than others. Zinc pincolate is the one I've seen recommended most often, but you'll need to do a little research. Here are two contradictory articles: http://articles.mercola.com/sites/articles/archive/2012/12/13/zinc-for-colds-and-flu.aspx vs. http://www.globalhealingcenter.com/natural-health/types-of-zinc/ one likes zinc gluconate, the other hates it. One recommends zinc orotate, which I've never heard of or seen readily available. Core uses these three types: Zinc Glycinate, Zinc Gluconate, Zine-Picolinate so I looked for something that used these. The other two considerations is finding a supplement that matches the dose you want to achieve (I found it hard to find low dose supps that I could take more than once/day - most were high dose pills) and also the foods you consume close to the time you take the zinc. (like don't take along with copper or calcium, don't take with coffee). Some foods aid absorption and others reduce it. You'll just have to read up a bit, consider your diet/schedule and then shop around to see what you can find that's closest to your needs. I use this http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_21?s=hpc&ie=UTF8&qid=1367752243&sr=1-21&keywords=zinc about every two weeks - I have each of us take a 10ml swig of it to see if there's any aftertaste. If you can't taste it, you're really deficient, if it has a strong metallic taste, you don't need to supplement. I don't use it daily - too expensive for that. But it's a good little test to gauge where you're at. Good luck!

Kathy, you may want to get a list of the genes that are tested and compare it to 23andMe, which is only $99 and is a spit test (requires about a 1/2 inch of spit in a collection tube). 23andMe tests CYP1A1, CYP1A2, CYP1B1, CYP2A6, CYP2C9, CYP2C19, CYP2D6, CYP2E1, CYP3A4, GSTP1, SOD2 A16V, NAT1, NAT2 (various snps of each gene). There are 990,000 snps tested so PM me if there are specific snps or gene mutations you're looking for that I didn't list and I can tell you if 23andMe tests for it. Not pushing this particular company, but it's $1050 cheaper. The one downside is that it takes 8 weeks to get results.

Your story seems to support PANDAS. As for whether Pands tics look different than TS tics - no. They appear to be the same. The difference is more 1. in Pandas, the tics decline/resolve when you treat the infection and 2. in Pandas, the tics come with other symptoms such as anxiety. OCD, dysgraphia (decline in handwriting), hyperactivity, urinary frequency or other changes.

Klinghardt says you should supplement with Omega 6 (we use Evening primrose oil). But other articles on the subject don't mention EPO as an essential supplement. My son tested 19 for KPU and from his response to Core and his response when we reduce it (serious and rapid decline in mental sharpness), I feel he'll need to treat this for life. My daughter tested 14 (on our test, below 10 was negative, 10-19 was borderline, 20+ was positive). Like your son, Core didn't seem to make any difference for her, yet when I give her a zinc challenge (have her swallow 2 tsp of liquid zinc) it has no taste to her, indicating a zinc deficiency. If you aren't deficient, it should have a metallic taste. But Core has both zinc and B6 and it's possible she only needs the zinc. So I just started a zinc supplement and will see if I notice any changes. She's been testing with high TSH yet all her other thryroid labs are normal (no Hashimoto's). Zinc is involved in a feedback loop between the pituitary gland and TSH, so hoping the zinc supplement will help the TSH return to normal. Not saying zinc is your whole answer. But might be worth looking into as a part of it. FWIW - my limited understanding of what Dr T is testing is mitochondrial DNA and not the DNA involved in the methylation cycle. You may want to look into doing the 23andMe test ($99 for first family member, $79 for additional family). I found it very helpful. As for your son's dark moods, maybe talk to your doctor about a trial of a med that lowers dopamine - it could be that his problem is too much rather than not enough. I'm all for natural ways of supporting the body, but there comes a point where severe symptoms warrant pharmaceuticals.

The idea of infection triggering psychiatric illness is much like religion or politics. Those who believe, totally get it and support you. Those who don't will tell you it's quackery, blasphemy or radical internet nuts leading you astray. Only you can decide where your truth lies. That said, I would gather a binder of medical research - Cunningham's study, the published works of Swedo, Tanya Murphy, et al so that you have data at your fingertips. You may have raised some alarms within this network of associates. So be prepared. I would also highlight your labs, are the viral antibodies IgG or IgM and are they high? Is there evidence to support the use of antibiotics for a chronic infection, even if an ID doctor disagrees with the treatment plan? Make notes for yourself so that you know why you're using each medication. It will give you peace of mind and also give you confidence should you ever need to justify your decision to work with particular doctors. Also document improvements that you saw once starting meds, so you can support a clinical picture that antibiotics have helped with certain symptoms. As for the supplement side - are these based on results from genetic testing (e.g. Yasko's methylation panel or 23andMe?). If you've only tested MTHFR, then I have two reactions - first, you are giving very large doses of methylfolate/folinic acid - both the Delpin and folinic acid are doing much of the same thing and these are very, very large doses that could be contributing to mood issues.Too much can be as bad as too little and you're giving almost 20 mg of the stuff when most adults only need 800mcg, even with MTHFR mutations. I'd seriously examine why this is so high. Also, only providing 1mg of methylB12 as a cofactor for all this methylfolate has got to be creating a folate trap. If you're going to stay this high on the folate portion, you probably need to be doing much higher B12 - but again, I'd consider lowering the folate side. If you're giving NAC and ubiquinol without knowing your son's CBS gene status, these could be making his mood issues worse. My DD who is CBS +/- cannot tolerate NAV - makes her flipped out nuts. My DS, who has different gene issues, needs to avoid ubiquinol, as it's a methyl donor and would make him agitated. 2400mg NAC is on the high side for most people, even if they can tolerate it. And I'm not sure I'd use it along with Luvox - they do similar things in terms of serotonin and you could be overdosing. I don't agree with the doctor's conclusions but I do agree that these doses might benefit from a second opinion or some titering downward (slowly and one at a time). Unless your son is very large, some of these doses seem quite high to me, especially if you aren't sure if he can genetically handle some of them well.

You only posted one set of Igenex results - there should be two - one set for IgM antibodies and one set for IgG antibodies (each set will list the same bands). Can you tell post the results for both sets? Also, what antibiotic are you using and for how long is the prescription? It's possible you are seeing a herx response but if there's an active infection of any kind, I'd consider tapering off the prednisone (if you've been using for more than a few days, you need to taper off, not stop cold turkey). Tics could be non-infectiion triggered TS but they can also be caused by too many toxins not being able to leave the body quickly enough - a detox problem. Make sure your son is having daily bowl movements, use an anti-inflammatory like motrin (not tylenol, which can deplete glutathione - the master detox agent) and push fluids. Resveratrol, vitamin C, milk thistle - can also be helpful for detox and some use activated charcoal or bentonite clay to bind to the toxins in the bowels to improve excretion. You may also want to reconsider the methionine - not everyone can tolerate this, depending on genetics. It can increase SAMe which is good for the body but it can also add too many methyl donors - again - good for some people, bad for others. Too many methyl donors can make certain people very angry and aggressive. I gather you're seeing Dr L - she's a great Pandas doctor and I respect her a lot. But she does not know how to treat lyme (nor does she generally try). If you decide you want to pursue lyme, post the region of the country you're in and someone may be able to recommend an LLMD. Hang in there - my son has struggled periodically with some very bad tics but he's always found relief and has gone years between episodes. He does not have TS. For him, the tics mean he's having a problem with detox and/or with too much dopamine.

Queenmother - my DD also flips out from NAC - turns out she has a CBS gene mutation and NAC should be avoided for this. You will also want to avoid alpha lipoic acid, even tho it's a glutathione precursor. Yucca and a small dose of molybdenum is helping her feel less run down (removing ammonia and oxidants). Makes me wonder if your DD also has a CBS issue? Like your DD, mine has a COMT issue but is only COMT+/- but is also MTHFR +/-, so like you, we've found that a small amount of methylfolate every other day works better than a daily dose. I found this 50 pg article very helpful - http://www.heartfixer.com/AMRI-Nutrigenomics.htm (scroll down past the diagram) Tu4four - you may find it helpful to look into some sort of genetic testing. We used 23andMe, which is only $99 but the downside is it takes 8 weeks to get results. But it's made a big difference in what my kids take in terms of supplements and also in how they feel. Not everyone feels they want to go this route and I respect that. I toss it out in case you hadn't heard of it before.

Omega 3s agitate my son - he has a condition called pyroluria which creates a shortage of zinc, B6 and Omega 6s. Omega 6s compete with Omega 3s for receptor binding sites, so he needs to avoid Omega 3s since that makes his Omega 6 shortage worse. Pyroluria was discovered by a doctor who was studying patients with schizophrenia. So it may be worth looking into for your son. Here are some good articles: http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg 3) http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf You may also want to test for toxoplasma gondii, as it too may be an infectious cause of schizophrenia http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/ Lemon Balm had the opposite effect on my son than I'd hoped for. No harm in a trial but I stopped it after only 2 doses.

It's not uncommon for Pandas kids to be super sensitive to SSRIs - the term used my Dr Tanya Murphy at Univ of Southern Florida is "activating" - our kids are activated by SSRIs at a much lower dose than most people. I don't know if this is a result of Pandas or just that a certain percentage of the general population is also sensitive. But at any rate, the rule of thumb is to start out much, much lower than a typical starting dose - some kids react to a dose as low as 5-10 mg where the usual starting dose might be 25mg. In some kids, 25mg is way too high and you end up seeing more of the very symptoms you're trying to treat. The other thing I've found is that one of my kids - my daughter - has a genetic makeup that would make an SSRI helpful for her anxiety. But my son has genes that make an SSRI as well as any anti-depressant MAO-inhibitor bad for him. The genes MAO and COMT are genes that regulate how fast our bodies use up the neurotransmitters serotonin and dopamine and norepinephrin, adrenalin, histamine and others. If you have certain mutations on these genes, you use up/degrade these transmitters more slowly. Or in the case of the VDR-Taq mutation, you convert Vitamin D into dopamine more readily than normal. My son has mutations on all these genes which conspire to make him very high in dopamine. So the last thing he needs is a medication that's going to inhibit degradation even more. What he needs is the opposite - things that make these genes work a little faster/closer to normal speed. So I've stopped giving him any Vitamin D. He also takes a zinc supplement for pyroluria, which depletes his copper (zinc and copper are ying/yang and too much of one can easily deplete the other). So I started another thread about how supplementing copper seems to be helping his OCD. Copper is a necessary co-factor for the MAO gene to help it break down dopamine. Your son's genetics are what drives his reactions to various medications at various doses. You may want to talk to your doctor about ideas for lowering dopamine rather than going the SSRI route or Abilify. Abilify is a dopamine agonist - and while I always get confused on this, I believe it means it helps/increases dopamine (but someone please correct me if I have this reversed). BTW - my son also had a negative reaction to GABA. As I understand it, GABA supplements don't cross the BBB very easily, which may be why you didn't see much change the first time. They didn't do anything for my son either. But then I tried Lemon Balm, which is GABA-ergic, meaning it helps the body increase its own GABA - and he got very angry and irritated. I stopped it and he calmed down. I don't have a good explanation for why an increase in GABA would be bad. But for now, it's just something we're staying away from. I've found small doses of niacinamide (vitamin B3) help my son calm down. So that's something else to consider. Niacinamide is sold in 500mg pills but my son needs more like 50mg. So we sprinkle 1/10 of a capsule on an oreo cookie as needed.

I have three thoughts for you. The first is that if your DDs ODD is being caused by OCD, it could be that the OCD tells her that you may leave her and that could cause two reactions - first to be angry at you because she's afraid you'll leave her and/or second to tell herself she doesn't like you so that it won't hurt as much when you do leave her. Of course these are both ridiculous, but OCD is not a logical beast. I strongly recommend finding someone who can help you with ERP Therapy (exposure/response prevention). Many find that ERP isn't very effective at the peak of a flare, but it provides invaluable tools for dealing with the thoughts as the flare wanes and also provides you with the emotional tools to weather the verbal storms while they happen. My second thought is about your DDs infections - I don't know if you're battling strep or some other infection but I wonder if you're seeing any improvements. If you feel any of the meds are helping, one strategy I used when my son was resisting taking so many pills is that I suddenly stopped pushing them. I said "fine, don't take them. However, if you chose not to take them, there will be no electronics, no sleep over at your friend's, no...etc. I said it calmly and put it in a way that it wasn't a threat or a punishment - simply a natural consequence for not taking responsibility for his own health. (he was 8 or 9 at the time). The second time this happened, we ended up stopping all supplements except antibiotics for 7 days in order to do a urine test. During those 7 days, my son started feeling really poorly and by the 5th day, was begging me to let him restart his supplements. From then on, when he complained, I'd say "fine, it's up to you. Just remember how you felt when you stopped last time." Somehow, simply turning the moment from a "do as i say" into an "it's up to you, so long as you understand the consequences" was all my son needed. He then got much better at owning the responsibility. My final thought is that there may be additional roadblocks in addition to infection. For my two kids, we found that a condition called pyroluria was a big part of my son's struggles and both kids have methylation roadblocks that effect their moods greatly. Testing and treating these issues have made a big difference as well. Hang in there - there are ways out of the darkness.

Nickelmama - I haven't heard of a need for balance between B6 and B12 either. B9 (folate) and B12 - yes. But not B6. Can you shed any light on the B6 connection?

Correct - my DS has pyroluria - no, I don't think he has high copper. That's why I started the post - it seems his OCD is decreasing as we add copper. I speculate it's because we supplement with 3 Core/day and lapsed in also supplementing copper, so he got copper deficient. My DD was at one point a little high on copper and has always seemed low on zinc from a symptom perspective. Last year, when she had EBV, we did 8 weeks of an artimisinin/EDTA combo - the artimisinin didn't seem to help the EBV (l-lysine was what cured that). but I always figured the EDTA helped chelate some copper. This weekend, I started a zinc challenge - I gave her 10ml of liquid zinc http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_20?s=hpc&ie=UTF8&qid=1367240518&sr=1-20&keywords=zinc and she didn't taste a thing, which according to Dr Greenblatt, suggests she's very zinc deficient. (I tried it and tasted an unpleasant metallic aftertaste, which is a relief since I take 30mg zinc every day and would be pretty upset if I didn't taste an after taste). So I'm going to supplement with some additional zinc and do the liquid zinc challenge every week as a litmus test. I wonder if the negative symptoms you saw from adding zinc wasn't due to some sort of copper chelation. When you add one and change the balance, it can cause the body to chelate the higher one. So you might be on to something with the charcoal idea. I wouldn't go overboard on the charcoal - a neurologist told me that use it cautiously b/c it can mess up your electrolyte balance, but Yasko advocates a charcoal flush - Charcoal and Magnesium Flushes Dosage: 1 to 2 capsules of charcoal, followed by enough magnesium citrate to produce a bowel movement within 8–12 hours. Once per week or more depending on testing and behaviors.A charcoal flush soaks up excess ammonia in the body. You may want to do a “trial run” with magnesium citrate the day before to determine how much you need to use to produce a bowel movement within 8–12 hours. You can do the flush on a weekend, as that may be more convenient. Use charcoal flushes if ammonia is high or needs to be kept under control, as indicated on the MPA and/ or biochemical testing. But on Phoenix Rising - a CFS forum that was frequented by Rich Van Konynenburg - who adapted Yasko's ideas to come up with a methylation protocol for CFS sufferers - the adult patients there felt a once a week flush was too little. Whether you use charcoal or not, I would make sure he's having regular/frequent BMs when upping the zinc to make sure the copper is excreted and not left in the gut for re-absorption. Ah - fun with chemistry!

I totally agree with DCMom - you were right to be upset about his doing something he clearly knows is not ok - he doesn't get a free pass just because of an illness. And tho we've not done it, I've never heard anything but amazing raves about the USF program. It sounds like your son could really use some tools taught by some top notch experts. The other thing is this - your son needs to learn that people are not saints, his mother is not super-human and he has a responsibility to consider other people's needs, regardless of illness. The world does not revolve around him and his disease (which by its nature is a selfish and demanding beast). Flipping out teaches a lesson - yo, dude - I am not Mother Teresa. You are not free to do whatever you want. There are consequences. I have needs and feelings and buttons that get pushed and there are boundaries you cannot cross. Get over yourself and start taking responsibility for your actions. The rest of the world expects better from you and so do I. So don't beat yourself up. I think you did the appropriate thing.

Moosiebell - we use Solaray Copper 2mg daily (but have used other brands with equal success). The B6 comes in the form of P-5-P in CORE http://www.retailbiopure.com/Core-240-Capsules.html

In my experience, yeast can cause some of the same symptoms Pandas can - OCD, anxiety, anger, no impulse control, silliness, brain fog - I'd definitely treat out of precaution and do some googling on yeast - you'll be amazed what the toxin from yeast can do to the body.

My DD may face tooth extraction in the coming years - mouth too small for so many adult teeth. So I did a little googling and found that it's MTHFR C677T that gets mentioned most frequently with anesthesia issues http://www.ncbi.nlm.nih.gov/pubmed/18580170 Influence of methylenetetrahydrofolate reductase gene polymorphisms on homocysteine concentrations after nitrous oxide anesthesia. Yet, DD and I both have MTHFR C677T +/- and we've both had anesthesia for endoscopy/colonoscopy and I've have NO for wisdom teeth extraction without issue. Ironically, my son, who has neither MTHFR nor CBS issues is the one who's gotten upset, disoriented and thrown up on me after anesthesia for his T&A But I did find this article Anesthesia and the Autistic Child http://www.autism.com/index.php/pro_anesthesiaThis was just a quick search. If anyone else finds good advice, please share.