LNN

Yes - very!

Exactly! I was thinking this afternoon about viruses and how my kids don't react to them, yet some kids do. One researcher theorized that it's possible that the immune system just learns to over-respond at the first sign of infection, regardless of the specific invader, and produces faulty t-cells that think they're Rambo, shooting everything in sight. The immune system is far too complex for me to know how likely this theory is, but something about it didn't resonate with me. If this were true, why did some kids have PANS responses to viruses and other bacteria (e.g. lyme) and not others? One other theory is that if the body doesn't have a full reservoir of ammunition - full supply of zinc, proper methylation, no excess of certain things or shortages of others - it diverts precious resources to the front line battle of infection and leaves the home fires that are normally barely fed feeling very deprived of vital nutrients. The nutrients needed for seratonin, dopamine, glutathione... And if you're really deficient, you not only end up short here but also too short-supplied to fight an effective battle against the infection. So you have a two-front war on your hands. Maybe both theories have an element of truth to them. Maybe individual responses are due to the things our kids are putting into their bodies - or not putting in - and their gut health. Maybe genetic mutations play a role in how effectively or ineffectively their bodies use the supplies they do have. Maybe these things are the precursors that then lead to a full Pandas explosion and misbehaving T-cells down stream. IDK. I do know that two years ago, I'd have never, ever contemplated taking my son off abx. I can now see that as a distinct possibility once we're out of the lyme woods and go a period of time with full remission. My DD may be off them even sooner. Nancy - really interesting about your friend and the zinc. Greenblatt feels that anorexia can be driven by a zinc deficiency that makes food lose its taste. This changes a person's eating habits, which then leads to additional nutritional deficiencies. Fascinating to think something as innocuous as zinc can have such broad implications, for eating issues as well as pyroluria/brain fog/mood.

Wow - I didn't want to reply because I didn't want to be Debbie Downer - but I've tried NAC twice on my DD (the one with the MTHFR/methlyation issue) and both times, she got wicked moody, bi-polar, would turn on me in a flash only to be remorseful and fall apart minutes later. It was like PMS in a pill. I have no idea why she reacts this way - it seems like a significant clue. But I haven't been able to figure out why. I once thought it might be breaking down a biofilm and it was causing some sort of infection/herx thing. But the puzzle pieces didn't fit quite right. I know SAMe, which is "supposed" to do wonderful things, can cause a negative reaction in some people. I can only assume this is true for NAC as well. But if anyone has any ideas, would love to explore them. lynn- I saw "hmmm" issues about a week into using it the first time and was certain it was the NAC by the end of the second week. Once we stopped, things got better. The second time I tried it a few months later - for allergies/congestion - I saw bad mood issues within a day (maybe because I was looking for any negatives) and it was enough to turn me into a chicken and decide the bottle belonged in our "tried but didn't work for us" cabinet (you know - the one filled with stuff you spent $$ on and can't bear to just toss, but will probably never use again ever).

I don't know if you're at all interested in looking into integrative medicine, but there's a psychiatrist in Waltham - James Greenblatt - who considers nutritional deficiencies and testing as part of treatment. He's also a professor at Tufts. This wouldn't be any sort of ERP or talk therapy - it would be supplements and a medical perspective. But for what it's worth - http://www.comprehensivepsychiatricresources.com/category.php?category_id=71

I'm in CT

My DD also liked Tiger, Tiger, Is it True? by Byron Katie. It's about a Tiger who has a terrible day and has a voice inside his head that tells him no one loves him. He then meets a turtle (I think) who says "is that really true?" and challenges his "worry" beliefs. Tiger comes to realize that no, it's not true. It's just a voice inside that he needs to stop listening to. That his family and friends really do love him. It's not written for OCD, but we used it for that. I paraphrased and commented so that my kids could see how self-defeating thoughts aren't true. That they need to not listen to the OCD and anxiety voices. Good book for the 3-6 yr old crowd.

Cool way to look at all the facets that this issue touches! Re: his stats - the stats on heterozygous C677T making you 55-70% efficient - I've seen estimates in the 40% range, but it's in the same ballpark. His estimate that you're only 10% efficient if you're homozygous agree with what I've read elsewhere. I haven't seen any estimates on how A1298 effects your efficiency. Tho it's studied, I never see as much understanding on what role A1298 plays or how to treat it. Yasko says you should use DMG/TMG/BH4 for the A1298 mutation and methylfolate for C677 mutations. But I haven't found as much research into A1298 (tho to be honest, it isn't the mutation we have in my family, so I haven't spent much time on that one) Re: his stats that 98% of autistic kids have a MTHFR mutation - my guess is that this must come from one particular study where 98% of the participants have this. I don't know of any all-encompassing research that has found this to be true of the entire ASD population. Comments like this make you want to take everything he says with a grain of salt, IMO. But I do agree with his mind map. It's a little simplistic - avoid bad chemicals and junk food - well, yeah. And I'm not sure the same supplements would apply to both mutations (C677 and A1298). I honestly don't know if you need to take methylfolate with A1298 or if you're good with just taking DMG. I haven't studied that piece well enough. But I like the way he laid out the map - it gives you a path to follow. You just may need to customize it a bit based on your own particulars. Like if you have chronic infection or metals, which steps you take and in what order may be different. I do agree you need to fix the bowels before you do anything else, because if you're not regular, then all the toxins you start shedding stay in the body and get reabsorbed. It's a strange experience to go to an LLMD or integrative and in your first meeting with this stranger, talk in depth about your bowels and graphically discuss what happens every day. But the conveyor belt has to work well before you can get rid of built up garbage. A few years ago, SFMom starting going on about detox and I thought she was nuts. Now I get what she meant. And going slow is what I've found too. When I've gotten impatient, I've paid the price with mood issues. I have to say, I'm starting to feel like this map and the whole topic applies to just about everyone, even those without an MTHFR mutation. Obviously, those without MTHFR mutations only need folate, not methylfolate. But the concept of testing in the map's upper left corner is good advice for everyone. My DH has been struggling with fatigue and other issues for about a year now. His PCP shrugged. His integrative MD is proving to be only mildly helpful, ruling things out but not offering much else. So out of frustration, I had him start taking 1 Core a few weeks ago. And he felt better. The other day, his integrative called with lab results and wants him taking 10,000 IUs of D3. This morning, he says he feels better than he has in a long time. So this confirms to me that his real problem is some combination of deficiencies and that doing a combo of supplements and detox is what's going to turn things around for him. Now I just need to find a new integrative to help us get there. DH said he's ok just following Dr Laura's pill-popping advice, but I'd feel better having a doc draw a few more pints of blood as a guide. Both my kids had hand-foot-mouth disease last week - 103 fevers. Both recovered pretty quickly and without any mood/Pandas issues. I honestly believe it's all the focus on "methylation" support (and I use the term broadly). Now, DD has a loose tooth and we've seen that typical erratic behavior for the past few days. So I upped some magnesium (to keep BMs going) and tryptophan and methylfolate and she woke up happy as a clam this morning, even with the tooth still stubbornly dangling from its socket. I wish it were an easier topic to discuss, because for my family, it's been "the" thing that's turned everything around. Thanks for the map. Going to bookmark it.

Early in our journey, my son relapsed every time he finished a 10 day course of abx. I have a few thoughts: 1. The abx you're using isn't the right one and maybe you can try something different - and for a longer duration. You can also ask to have a culture analyzed for strain of bacteria to tell you which abx is appropriate. 2. If there's any congestion, the bacteria could be hiding in a biofilm and the abx aren't getting thru. You may need to do abx longer or pulse them and consider adding a mucus thinner like Mucinex or NAC to break down the film. 3. Your kids may need T&As. My son's strep issue didn't resolve until his T&A, despite a 6 weeks of continuous augmentin. I believe the strep was chronic in a biofilm in his adenoids. I know the roller coaster is exhausting. You can also consider supplementing zinc to help the immune system, but I think you need to get to the source of the chronic infection. 10 day treatments never worked for my son. Good luck!

I've found this is absolutely true in our town as well. Teachers may want to be sympathetic to what you're going thru at home, but in the back of their minds, they're thinking "what do they want me to do about it?" or "how does this effect my class and are they telling me I need to change something specifically or are they just venting?" When we've addressed specifics, we've gotten a lot more buy-in. So start with an interview - ask the teacher what behaviors they see as a concern (don't bring Pandas up immediately). Then a quick explanation of Pandas and how it will make behaviors very fluid over the school year. Then spend most time helping the teacher develop solutions. They'lll ask for more info on Pandas when they're ready for it. The first concern is helping the teacher and student navigate the day in the best way possible so learning can happen. So for frequent bathroom trips, we developed a ticket system. DS started each day with xx tickets and he had to learn to ration those tickets and spread them thru the day. It wasn't a stingy amount - maybe 5 or 10. But a set amount so he couldn't return from a bathroom brake and immediately turn around to go again. For ADHD, DS has a 504 that allows gum chewing and holding a manipulative, like a squish ball. For projects requiring fine motor skills, he's allowed to use clip art instead of drawing things or if the main goal of the project is to express an idea, I'll do the cutting and pasting since he sucks at that. If impulse control is an issue, I tell the teacher to sit DS with a group of well behaved girls (which DS secretly likes because it's just too much to ask him to resist the exuberance of his male friends and he ends up misbehaving despite sincere intentions not to). There are certain kids DS should not be seated next to or paired with. So very tangible, specific tools to help are more useful and better embraced than generalities or details about home life or the science of Pandas. If you know certain things trigger anxiety, talk to the teacher. Ask that the child be told 5 min before a fire drill or be encouraged to wear discrete ear plugs at a loud assembly. If a child has tics, ask the teacher to send him on lots of errands out of the class - please bring this envelope to the main office...- to give time for tics to burst out without lots of eyes on him. Never ask a ticcer to do work that requires their hands on a community table if that means the whole table will shake and jerk. Instead, ask the child to complete that quiet reading assignment at a separate desk. Or pull the child aside and tell him that for this 30 min writing assignment, he can jot down an outline and then dictate the full sentences to the parent at night (assuming the goal is to develop and write about an idea, not to develop penmanship). If the teacher embraces these things, you'll end up not caring so much about whether they "get" Pandas. Nancy - you gave me an idea - "if" an article "Pandas Behaviors and Your Student" were to be penned by a formal organization or be published in a OT or special ed publication, what points would you want it to include? We do after all have members who've been known to author "reputable" documents in the past and perhaps we could contribute ideas to a similar article that could be ready for a fall publication when school starts back up...

You can try something from the cephalosporin family - omnicef, ceftin...but there's a chance she'll be allergic - or develop an allergy - to these as well. My DD is also allergic to amox and could use cephalosporins for a time, but eventually became allergic to them as well. Bactrim is an entirely different family as is rifampin, but not sure how well they work against strep (we used them for lyme). We use zith as the staple abx and have used the others for various, specific issues.

I'm just going to toss some stuff out for you to consider - not trying to diagnose or Monday morning quarterback... One possibility is that what you're seeing is a herx response. If the IVIGs are making the immune system stronger, or giving him antibodies that make him better able to fight the mycoplasma, then you could be seeing a response to toxins/die off. If this was the case, then using things to help with detox and inflammation would help. It might also suggest that you need a longer period between - if the body isn't detoxing well, you could be adding to the die off faster than it can clear, in which case you'd want to slow down. Another possibility is that the IVIG isn't helping much at all and the myco and possibly other infections are growing stronger and you haven't hit upon the right abx combo. I'm assuming your dr. has tested for lyme, but I'd really look in-depth at the results and consider either re-testing, testing for co-infections or using an alternative testing method - like PCR testing. Another consideration would be to look at "methylation" issues - and I use that term very loosely. Test for MTHFR and HLA-DR genes, test for pyroluria. If the body's conveyor belts are clogged, you're going to get scrambled signals to the brain. You can also try adding something like tryptophan, 5-HTP or an SSRI for relief. For the urinary urges, arginine or foods high in arginine might be worth considering. Arginine is a vaso-dialator and relaxes the muscle spasms associated with the outer bladder that causes over-active bladder. I wish I had more concrete ideas. But I have to agree with both Nancy and PowPow. If multiple IVIGs aren't giving you results, I'd rethink what you're doing and if you're not using CBT, it's a great tool to add - not just for the immediate crisis but for life. It gives you power over your emotional responses that, over time, become second nature and really empower you. As for detox - you can search the archives for ideas or post on the lyme forum - it's a common problem for those with chronic infections. Resveratrol helped with my son's inflammation as did motrin; alpha lipoic acid, CoQ10 can also help with anti-oxidation, milk thistle can help the liver, binders such as bentonite clay or activated charcoal can help the bowels...An integrative doctor can be really helpful with this. Most of all, try not to get discouraged. You can hit a really low point after hitting your head against so many walls. But try to remember that sometimes the biggest wall ends up presenting that game-changing clue to get out of the nightmare. You get so exhausted that it forces you to cast a wider net and sometimes that's the key. At least that's how my own family found it's way. Hopefully this will be a turning point for yours as well.

FWIW - many people seem to do well on Sacc B and everything I've read make it a "good" yeast. I have no idea why, but my DS seems to do poorly on this. He shows brain fog, hyperactivity - "yeast" like behaviors. When we eliminate it, with no other changes, his behaviors improve. Not trying to discourage - like I said, it's supposed to be good for everyone. I only mention it in case you see "yeasty" behaviors - it might not be a Pandas flair but rather a response to the Sacc B. Of course, DS is the exception to the rule in many areas, so your kids might do just fine on it.

I use the products that contain IR3535. One caution - Environmental Working Group frowns on aerosols - because it's easy to inhale whatever is in the product. They prefer lotions.

The testing is always a tough question. I tend to agree with your LLMD. If the basic test comes back with evidence to support a lyme dx, you're going to pursue treatment anyway. If some symptoms also support co-infections, your LLMD can just rotate in abx that treat those co-infections in addition to the lyme. You can also do a bartonella test thru Specialty Labs - a part of Quest. Covered by insurance and somewhat reliable. My DS was negative on this test but responded well to the abx that treat bartonella, so we used clinical symptoms and treatment response as our guide. I know it's comforting to have positive labs to reassure you that you're on the right trail. But you can also drive yourself crazy, since the tests for lyme & co. are just not that good. The only accurate test I know of is the new lyme culture test by Advanced Labs (there's a recent thread about it). But you need to be off abx for a month and it's $500. So you need to decide between accurate/being reassured you're on the right trail vs. going off abx. Personally, I'd save the money on additional testing until you get the Igenex results back on the basic panel. I'd also ask your LLMD to test for pyroluria (aka KPU) and the MTHFR and HLA-DR genes, as these three issues have been part of some pandas/lyme kids and the kids don't really have break thrus until these issues are addressed in addition to the infection piece. I would also read up on detox. This proved to be a contributing factor for my DS. Best of luck! I know lyme can feel like a kick in the gut, but it was the best thing that could've happened to us. My kids are really, really good now and I'm actually remembering what normal feels like.

It's a blog site called Easy to Love But Hard to Raise (http://www.easytolovebut.com/ that MomWithOCDSon turned me on to and I occasionally blog for. The mom who writes about her OCD son - Barbara Claypole White - is wicked funny. JAG helped me with my most recent post, so this was sort of an inside joke - trying to get her write a story of her own. She's encouraged me at some really low times when my son's brain fog seemed "permanent" and has celebrated with me privately as he's emerged from the haze. But I don't have the before/after amazing test scores to tell this sort of story. So nudge, nudge...

:wub: I know a place you could guest blog your story - to let other parents know that test scores are more fluid than we're led to believe. That our instincts about our kids are often more accurate. Ya know...if you were so inclined...

Our LLMD ordered the test for my kids. One parent posted awhile back that Greenblatt missed a Pandas dx on someone - so not sure about any Pandas knowledge. But I liked his book on anorexia and know he embraces an integrative approach to neuropsych issues. Big on the role of zinc and other vitamins/minerals. So I'd suspect he'd be a supporter of testing for pyroluria. But would call his office or send an email to check. Basically, an ordering doctor needs to set up an account with the lab if you want to order thru Vitamin Diagnostics. I don't believe this is hard to do and suspect most DANs and integratives would use this lab for other tests in addition to the KPU. But it's a urine test. So if you wanted to use the lab Coco mentions, you could do the test yourself.

No. They'll be in school. I'll be in Boston for a work-related project that morning. Kara - any good place to meet at the waterfront? Maybe at the stage/speaker's podium just before 11:30 or just after the speakers are done?

PMd you my experiences.

Definitely ask him for the KPU test. Sometimes he seems to test for it early but for us, he didn't test until 9 months into treatment and once we found it and treated, it made a world of difference (it's a urine test). If your kids can handle the blood draw, discuss testing the HLA-DR gene to see if detox will be an issue.

Thanks for the link Mayzoo. It was good background! lfran - my DS has no MTHFR mutations, so methylfolate/methylB12 won't be his answer. Ironically, it's my daughter who has the mutation and she's been dry since she was 2. But I will try to research B-12 and take a closer look at his intake. Because he has no mutation, it hasn't been a focus on mine before. Coco - you sound like me. I keep telling myself that once we tackle the most recent issue, the enuresis will resolve. I feel like I'm trapped in the song "The Bear went over the Mountain" - every time we climb one mountain, we find yet another friggin mountain and the grocery cart continues to get filled with pull-ups. It's the one symptom we haven't made a dent in. And unfortunately, this morning he wasn't dry, breaking the 3 day streak (tho he was dry until daybreak). I know that of all the symptoms, this one if by far the last one to complain about. I just hate to see him beat himself up. Will keep trying the arginine for awhile longer and keep digging.

Looks like I'm going too. Let me know if you guys decide on a meeting place.

My OBGYN was only vaguely aware of MTHFR and methylfolate - not enough to be telling her pregnant patients about it or testing for it (Grrr). I also told her about some fibrocystic issues I was having - neither the OBGYN or my PCP had any suggestions for the pain and they shrugged, suggested I could have a $425 out of pocket mammogram/ultrasound to rule out tumors. Then my naturopath recommended iodide supplement and in 2 months, the pain has completely resolved (mammogram was also normal - was able to avoid the ultrasound and only be oop $225 - but I did make sure I ruled it out). The iodide info is mainstream http://www.umm.edu/altmed/articles/iodine-000308.htm and NIH http://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/ (about 2/3 down the page). But my OBGYN had no idea. At least she wrote it down so she could look into it. (and FWIW - for those who have menopause on the radar - look into black cohash before filling a script for HRT). There's this general assumption that mineral/vitamin deficiencies are rare, that pharmaceuticals are superior and safer than supplements and that it's certainly legally safer to prescribe something to minimize disease symptoms than to look comprehensively at prevention. Ok, enough ranting for now.

Yasko's book says that A1298 doesn't lead to elevated homocysteine and doesn't require supplementation with methylfolate. Instead, this mutation effects BH4, which is a gut/liver thing. She says it can effect the Krebs cycle and can lead to a build up of aluminaum and a reduced ability to clear bacterial infections (Klinghardt speaks about Krebs/aluminum and infection too, but doesn't tie it to A1298). She suggests supporting BH4 levels but no matter how many times I read the chapter, it's not clear how to do this. Online places have suggested DMG/TMG as a supplement. Maybe someone else can interpret her advice. It's not clear to me what to specifically do about the A1298.

Pandas aside, DS continues to struggle with primary enuresis. Has never been dry and is now at the age where friends are having sleep overs. In my research, there seem to be three main reasons for enuresis - 1. you don't produce enough vasopressin/ADH (antidiruetic hormone (so your body doesn't know to make less urine while you sleep) 2. your bladder contracts, causing urges even when the bladder isn't full (i.e. over-active bladder - same condition that makes older men wake up frequently at night to pee) or 3. the child sleeps too heavily and ignores signals to wake up before succumbing to a filled bladder. We tested ADH and while not super high, it's in the normal range (a 4 in a range of 0-12). When researching overactive bladder, I came across this explanation and it made a lot of sense Pandas-wise (similar to the explanation Dr L gives): The bladder is a membrane sac that serves as a temporary collection reservoir for urine to be held before it is released from the body by urination. The bladder is capable of shrinking or expanding depending on the amount of urine that it contains. The outside wall of the bladder is covered with the detrusor muscle, a muscle that automatically contracts or relaxes depending upon the amount of fluid inside the bladder. The nervous system is also involved in the urination process. It is able to sense when the bladder is full, send a signal for the detrusor muscle to contract and also helps control the sphincter that allows the person to initiate urination. (5) For unknown reasons, in OAB the body inappropriately senses the volume of urine contained within the bladder and the detrusor muscle tends to contract and relax in an uncontrolled, sporadic manner. The increased frequency is likely a combined result of the decreased function of the bladder as well as a way in which the person adapts to try to avoid leaking urine. Urgency is the uncontrolled contraction of the detrusor muscle leading to an increased urge to urinate. The urinary incontinence occurs when the contraction of the detrusor muscle cannot be overcome. There are multiple causes for bladder incontinence. With OAB the person is limited by the symptoms and generally the bladder or urinary tract does not deteriorate any further. Other causes for urinary incontinence include problems with the sphincter on the urethra, birth defects, blockages in the bladder or urinary tract infections. A condition known as neurogenic bladder has the same symptoms as OAB and can be classified as OAB, but generally results from a disease of the nervous system such as multiple sclerosis, Parkinson’s disease or even a spinal cord injury. (6) It is important to have a healthcare professional determine why the urine incontinence exists so that the proper treatment can be given. So the notion of excessive contractions seemed like a reasonable thing to look into. Because methylation is my "thing", I looked at the various cycles, particularly the urea cycle. One semi-essential amino acid that's involved in this cycle is l-arginine. ADH is known as arginine vasopressin. Now I realize they are different but I can't seem to find a good explanation of how different. Still, the shared name is enough to intrigue me. One of l-arginine's main functions is as a vaso-dialator. (I think arginine vasopressin has the opposite effect as a mild vaso-constrictor but not sure). Arginine as a vaso-dialator means it makes blood vessels relax (it therefore has some effect in lowering blood pressure and it is also used to help men with erectile dysfunction). So maybe, if DS's issue is over-active bladder, l-arginine could help. I've found mixed info so far. Some sites that advocate natural supplements say it can help. More mainstream sites say it doesn't help. But that's not uncommon. Some sites also warn against long term supplementation, saying not enough research has been done, no upper limits have been established...other sites say no long term effects. Some sites point to abuse in the body building world because high dose l-arginine can release growth hormones, but they're talking about 10 grams. I'm only talking about a 500mg pill. Anyway, out of frustration (DS's and mine), I've given him 500mg l-arginine for 5 days now. The first 3 nights, I think he was dry at 6am when I checked on him but he woke up wet. He confessed that he's now in the lazy habit of peeing in a pull-up before he gets out of bed because it's "easier" than getting up to go to the bathroom and interrupting his weekend lounging-in-bed time (men!). The past two days, after a "do you really want this?" talk and the benefits of having to get up earlier for school days, he's woken dry. So I'm kinda semi-optimistic. I'm fairly comfortable that at 500mg I don't need to be worried about growth hormone and probably not even blood pressure. Also, some reading suggests arginine quickly dissipates. But...some of you are amazing in your research skills and I was wondering if anyone had info - pro or con - that I was missing. It would certainly be awesome to put this issue behind us, but not at the price of introducing any risks. Any thoughts? (He is almost 10 - "growing out of it" is wearing thin).