jan251

We have big issues with Miralax. It makes him feel strange, foggy and generally mentally uncomfortable. Indeed, a month of miralax to resolve a particularly bad constipation situation immediately preceded the onset of PANS/PANDAS. (There are major gut issues involved in his PANS, including but not limited to germs and likely intestinal permeability.) Mag citrate has been helpful for him. If that's not an option, I'd try daily fruit smoothies with kale and a tablespoon of flaxseed. Culturelle probiotic is good for constipation. Avoid s. boulardii.

I have no clue how this works. However, my first thoughts would be whether there is an infection that affects the skin and/or one that could affect the bone marrow (such as infections of red blood cells). Just throwing out ideas... Re: the dark chocolate, that's interesting. If it were me I would try CocoaVia to see if it helps. I think I read about it on this board a long while back. There are capsules and IIRC, there might be a drink. (Or I'd be giving dark chocolate every day!)

http://www.nature.com/ncomms/2015/150811/ncomms8934/full/ncomms8934.html http://www.latimes.com/science/sciencenow/la-sci-sn-omega-psychotic-episodes-schizophrenia-20150812-story.html This very small study is primarily about schizophrenia but provides some interesting food for thought. If I'm reading this table correctly, there were the same small number of individuals who later suffered OCD in the Omega-3 group as in the placebo group. Some of the other numbers are interesting at a glance, as are the overall numbers, though it's just so small.

I get capsules from amazon by Seeking Health. I think it's called Resveratrol Plus. http://www.amazon.com/Resveratrol-Vegetarian-Allergens-Seeking-Health/dp/B00DCGIYW0/ref=sr_1_1?rps=1&ie=UTF8&qid=1437953615&sr=8-1&keywords=seeking+health+resveratrol While there are many brands of resveratrol, it is challenging to find a resveratrol that is just japanese knotweed (polygonum cuspidatum) without resveratrol from grapes. (FWIW, I have seen discussions about people having issues with changes to the Source Naturals brand, and I'd guess the change was probably the addition of red wine extract. So I never bought that one. I do have the Now one with red wine extract and I didn't like it though I can't remember why - maybe headaches or something)

Another two cents: urinary issues are such a common symptom of PANS that they are listed in all the proposed criteria I have seen. The anti-inflammatories helping would point to an inflammation (immune-related) cause. I agree with pr40 that your approach in choosing between infectious triggers and dietary ones need not be either/or but rather both/and. In other words, there can be multiple immune triggers. My rough understanding is that avoiding dietary triggers can be helpful for healing the gut (and therefore for healing the immune system).

If only strep and myco were the only types of infections that can precipitate a flare... (They are not.) In addition, the Anti-Dnase number is not only still elevated, but these titers do not necessarily correlate well with symptoms, as you have seen. The March Anti-Dnase does indicate a strep exposure - was it treated? As far as I know, the suddenness of the onset is the main distinguishing factor between PANS and regular TS/OCD. Indeed, some have speculated that perhaps regular TS/OCD are also immune-related. You have sudden-onset, twice - relapses are not uncommon with PANS. Additional food for thought: is there urinary urgency? Symptom relief from anti-inflammatories? Make your list of questions for your appointment tomorrow. Think big picture about possible immune system disfunction and what you might like tested. (Personally, with this timeline of events, I'd be inclined to continue treating for strep in addition to whatever else the doc comes up with, also considering whether an antibiotic change is in order if he's on one currently.) Good luck!

I've never heard of a 3-day course of azithromycin (aka zithromax or z-pack). As far as I know, the standard course is 5 days. Ordinarily, I would worry that 3 days is too short and could promote resistance, but if you're switching back to erythromycin at some point not long after surgery, maybe that doesn't matter. My two cents on the heart angle: while I'm vaguely aware that there are risks, I have a child with multiple serious heart conditions (including but not limited to an abnormal ekg) and azithromycin was not a problem, nor was Biaxin, which is in the same drug family. I haven't read the research in a while, however. Several members of my family have taken azithromycin over the years, including my son with the heart condition back when he was a baby, long before we knew about the heart condition (and without checking bloodwork). It is very commonly prescribed in the US for certain sinus infections and certain types of pneumonia/lung infections. In other words, for my kids, I wouldn't blink at the prescription for azithromycin, though certainly it's always important to weigh risks. Good luck and let us know if you see improvement after the tonsillectomy. Adding, about your dd's chest pains: my ds had an issue with chest pains when his OCD began. His cardiologist checked him very thoroughly, including lengthy home monitoring, and found nothing. At the time, we thought it was a sort of "panic attack" though now we believe the chest pain was due to babesia (or some other germ that acts similarly). During the course of the past year of various treatments, the chest pain has become rare, though it came back briefly when we started treating for babesia. Note that strep is the (a?) cause of rheumatic fever, which impacts the heart. This would more commonly impact the valves with an additional possibility of pericarditis.

The WSJ article was picked up by fox news in an abbreviated form: http://www.foxnews.com/health/2015/07/13/can-infection-trigger-ocd/(what an odd photo LOL) and it looks like the full article is also available at this website: http://www.bdlive.co.za/life/health/2015/07/13/can-an-infection-trigger-ocd (I find myself wanting to see the lymph vessel discovery tied into a PANS discussion... how hard can it be to consider that)

Can an Infection Trigger OCD? http://www.wsj.com/articles/can-an-infection-trigger-ocd-1436734446 (https://www.google.com/?gws_rd=ssl#q=Can+an+Infection+Trigger+OCD%3F ) 5 Things to Know About PANS http://blogs.wsj.com/briefly/2015/07/12/5-things-to-know-about-pans/ (https://www.google.com/?gws_rd=ssl#q=5+things+to+know+about+pans )

A couple ways to think about this: a person with immune system issues can have difficulty getting rid of lots of infections. Also, there is a theory that lyme can depress the immune system. Since strep exposure is extremely common, it makes sense that a child with lyme might pick up strep during one of the many exposures during the school year. Bart is typically a co-infection of lyme, so while it's a separate germ to treat, the exposure may be one and the same with lyme. It can also come from cat scratches. I don't know anything about mercury, but thinking out loud, I would wonder about possible genetic defects that make clearing mercury more difficult (say, following exposure via vaccines), either on a cell metabolism level (mfthr?) or a liver-focused level (comt? I can't recall the names for the liver ones). I really don't know whether this is a correct perspective, but that's my two cents. (FWIW, I have a child with positive tests for strep, mycoplasma, and lyme, and clinical diagnoses for babesia and bartonella. We have not tested for mercury.) Adding: I'm interested to hear about your strict diet and whether you think that is helping - did you eliminate foods following test results or simply try GF, for example? Thanks!

It is on my mind that tonight is the full moon (possibility of parasites). However, I don't know how far in advance a flare would begin, nor do I fully understand the full moon connection to parasites and/or lyme.

http://www.latimes.com/local/political/la-me-pc-vaccine-mandate-bill-up-for-vote-thursday-in-california-assembly-20150624-story.html I wonder what it takes to show an immune system deficiency. Looking for a silver lining - perhaps more people may ask to be tested for immune system deficiencies (say, IgG subclasses, etc.?) and the extent of such deficiencies will be elucidated? Will this encourage parents to request, and argue if necessary, for such testing? In what sort of a bind would a request for immune testing (say, in a child with non-standard symptoms or no symptoms) put the doc who wants to decline the request?

http://www.gwinnettdailypost.com/news/2015/jun/25/controversial-autism-researcher-jeff-bradstreet/?news

Hmmm, well this is interesting http://www.steadyhealth.com/articles/have-dentists-discovered-a-new-treatment-for-tourettes-syndrome?show_all=1 However, part of this particular article seems incorrect: ...which casts a bad light on the general idea. Perhaps, like everything else, there's a possibility that for some kids it might be one piece of the puzzle? Obviously, in my son's case, it wouldn't explain the immune abnormalities and the positive infection tests (strep/myco/lyme&co), but it might explain why he seemed so much happier during the palate expander phase (the sudden-onset OCD that followed was such a huge let-down! I thought things were moving in the right direction and then bam!). If it is a puzzle piece, it could be the reason or part of the reason that we haven't seen much relief yet with antibiotics and supplements. Now I want to talk to the ortho - I don't expect he'll know anything but there's a chance he might be willing to research a little. Our consult is two months away. Grow teeth, grow! (hmmm, he's off dairy; maybe his teeth could use more calcium though supplementing that has seemed unhelpful in the past) ETA: an interesting article http://prettyinprimal.blogspot.com/2011/05/epigenetic-orthodontics-building-better.html (Hey I just had a wacky idea - I remember reading that some docs think they can "see" autism in a child's face. For some reason, this idea kind of bothered me intuitively, as if the cause were solely genetic, i.e. that would seem to be an oversimplification. Whatever the cause of the facial structural anomalies discussed in this article, suppose they contributed somehow to neuropsychiatric issues of various kinds? Maybe some sort of inter-relationship between structure and immune issues? What about that new discovery with the lymph vessels to the brain - suppose there was some sort of structural impact on them?) Another link about facial structure http://www.mouthmattersbook.com/2013/12/08/facial-meltdown-if-a-form-in-nature-isnt-beautiful-something-is-wrong/ (incidentally, my ds was born with a full tongue-tie that was corrected by an ENT when he was a baby but he sometimes complains that he doesn't think he has full motion though I don't have a way to know for sure...)

Thanks Kim, I will look for that!

Humor me please Prior to the sudden-onset OCD, my ds always had a low level of anxiety and sensory issues. During the year right before the OCD, he had a palate expander followed by a retainer. While the palate expander was in and afterward with the retainer, he seemed much happier - it was kinda weird! (I had expected all sorts of complaining about the expander but it never happened.) Shortly after he outgrew the retainer, whatever perfect storm of events occurred and the OCD showed up (infections, immune issues, etc.). My ds will probably be getting braces in a few months, some time after his next ortho checkup. We are waiting for teeth to come down but it's no secret that he will need braces for sure. Is there any sort of change the expander could have had on parts of his head that contributed to a mood improvement? When I look at diagrams online, it doesn't look like the palate is anywhere near the basal ganglia, LOL, so I doubt it, but part of me has wondered. How about braces - did anyone get lucky and notice positive mood improvements (or, even better, OCD improvements) that seemed to correlate with braces or other orthodontic work?

You can search specific medicine names in snpedia and perhaps turn up rs id#s to compare with your results (search the text file for the rs id): http://www.snpedia.com/index.php/Seroquel http://www.snpedia.com/index.php/Risperdal You may also put the 23andme results into promethease.com for $5. I recall promethease turning up a couple of rs id #s that indicated something about SSRIs and some about anti-depressants. The person would be "more likely to respond to" certain meds, or not, though my fear in the language is that perhaps "more likely to respond to" indicates more likely to overreact - it's unclear to me without going to the actual medical studies though the studies should be linked at snpedia. (My own child's results are confusing - some results indicate more likely to respond, some less likely) These rs id#s have something to do with anti-depressants: http://www.snpedia.com/index.php/Rs1360780 http://www.snpedia.com/index.php/Rs2032583 http://www.snpedia.com/index.php/Rs2235040 http://www.snpedia.com/index.php/Rs7787082 http://www.snpedia.com/index.php/Rs7997012 http://www.snpedia.com/index.php/Rs1532701 http://www.snpedia.com/index.php/Rs12720067 http://www.snpedia.com/index.php/Rs4148740 http://www.snpedia.com/index.php/Rs3892097 http://www.snpedia.com/index.php/Rs908867 SSRIs: http://www.snpedia.com/index.php/Rs6311 http://www.snpedia.com/index.php/Rs1364043 (should probably search for more) Hope this helps...

I would look around for a PANS/PANDAS specialist. The concern with going through regular doctors is that even when they're open to ideas, they don't have the expertise needed to go about this in an efficient manner. It's hard enough even with an experienced PANDAS doc to get to the bottom of things. With chorea-type movements and sudden-onset OCD, it would seem prudent to continue exploring PANS and, sorry to say, you are a long way off from exhausting possible things to test. Somewhere there is a list of things to test, try here for example. As for lyme, I can't recall the percent, but many people do not have a known tick bite and still test positive for lyme (my own child included; not that lyme treatment has been the silver bullet we were hoping for, at least not yet). When a person's immune system is wacky, lots of different infections can show up. It can get complicated. If you haven't tried already, I'd probably also ask for a trial on an antibiotic.

My son's accidents started maybe six months after potty training. At first, we thought they were just due to the chronic constipation (which is very commonly the case). Then, we thought they were due to his tethered spinal cord (which can be the case); he had surgery to release the tether around 5 y.o., which helped. We didn't know about PANS/PANDAS way back then. What helps my son now, years later: magnesium citrate (this definitely helps beyond the constipation issue, which it also helps) D-mannose (I don't know whether there is a mechanism beyond the obvious e-coli binding but I suspect there might be) Both are available in powder form. Mix in water. For the mag, add sugar to make "lemonade" (I usually added about twice as much sugar as mag, so usually about a quarter tsp of mag with a half tsp sugar; FWIW I greatly preferred the Now brand and do not like the Calm). The mannose is sweet and flavorless, can be added to any liquid easily. One would think I'd have figured this out by now, but the urinary issues are still mysterious to me.

Has anyone had any luck reducing OCD and other PANS/PANDAS symptoms by treating for parasites? I've seen older threads where people were considering treating but I don't recall seeing threads where obvious improvement was mentioned as a result. I'd love to hear thoughts, suggested treatments, etc. Just trying to cover all our bases as I feel like we're still missing pieces (strep/myco/lyme/bart/babs aren't enough pieces, apparently). As constipation has been a life-long issue for ds and OCD took off after some gut supplement adjustments, it would make sense to me if parasites were playing a significant role in the mix. (Haven't had a chance to discuss with the PANDAS doc yet.)

Try to find a PANDAS doc. Also beware of assuming only one particular germ is the problem. Consider the big picture: immune system health, methylation, etc., especially in light of the ASD-type behaviors. I think you are wise to consider that much of the behaviors might be PANDAS prior to getting assessments, though time is of the essence. If you can't see a PANDAS doc soon, herbal options to treat infections are generally available over the counter, at your local vitamin store or amazon. That takes a good deal of reading but at least reading is something within your control.

Wow! Full journal article here: http://www.nature.com/nature/journal/vaop/ncurrent/full/nature14432.html (oops, I can't get the full article) Another news article http://www.eurekalert.org/pub_releases/2015-06/uovh-mlf052915.php

We did the 23andme testing and have found it helpful. I did not use ds's full name, so in theory, it's anonymous. I plugged the raw 23andme data into genetic genie and found some useful info regarding methylation (we already knew he was compound heterozygous for mthfr) and for detox (he is slow in phase 2). Our doc recommended some supplements that theoretically should help. In addition, as I read random medical articles, I sometimes come across mentions of genes. Last night I found an article mentioning this gene http://www.snpedia.com/index.php/Rs2391191 . Since my ds 's genes for that are AA, according to a few articles linked at snpedia he is at risk for developing various psychiatric conditions. I also came across an article indicating that NAC may be helpful for reducing a particular toxin, malondialdehyde, in mice with a similar genetic defect (at least as best I can figure) http://www.nature.com/npp/journal/v36/n11/full/npp2011109a.html , http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/ , http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4423164/ (I'm not sure why these links aren't clickable?) There was another article in my chain of thoughts but I need to go back and find it - it was an article about the mice and malaria, which has relevance as we are dealing with babesia. Anyway, this is encouraging to me to try ramping up the NAC to higher and more consistent levels than we've tried in the past, especially since the 23andme results show that he's an undermethylator with no apparent CBS issues. (Does any of this make sense?) (I am looking at the question of whether NAC is contra-indicated by some of our artemisinin-related treatments).

What about Lyme co-infections? Are you seeing an LLMD? We are a year in as well, without anything positive to show yet. However, we're pretty sure we're still dealing with infections. I'm reluctant to consider IVIg until infections have been cleared, but I don't know more about that. We're going for a combined antibiotic and herbal approach, but my understanding is that lyme&co will take a long time to fix. It is complex. Then there's the genetic defect/methylation angle...

I don't know what a PANS/PANDAS expert would say, and maybe the more experienced parents here will differ, but as a mom with suffering child, yes I'd want to start on some antibiotics in the meantime, probably something straightforward like augmentin XR or zith, for a month or two. Even if it does nothing, at least the route will have been attempted (i.e., no response is information nonetheless). If the ped is willing, I might also want to check some other titers, like mycoplasma, and possibly some immune parameters (IgG subclasses and so forth), additional information so that when you finally do see a PANS/PANDAS expert, there's much more information to work with and you might begin treating immediately rather than wait weeks for test results to come back (or who knows how many months for a follow-up appointment to go over results and come up with a treatment plan). I've seen lists of things to test someplace - let me see if I can find some - try this article, table 3 on page 5. I would also look around to see if you can find another PANS/PANDAS expert to see while you are waiting. I put in a few calls and emails to the Stanford clinic last summer but never heard back (we are out of state but were willing to fly). In other words, I wouldn't hang my hat on being able to get in there in any sort of timely manner even once they start accepting new patients again (if they start accepting new patients in July, does that merely mean that in July they'll be willing to give you a first appointment that might be yet several months later?)