bobh

We have not been on zith for more than a month or two. What dose/timeframe is being offered to you? At http://www.pandasnetwork.org/understanding-pandaspans/antibiotics/ it says, under Zithromax: "This has been useful for several us for over one year’s time. There is debate about the safety and efficacy of continuing on it for several years. We’ll have to keep you updated on this debate." I think this is an dated comment - there may be some new data on its long term use, but I am not in the know on that one.

When we started Zoloft, we insisted on 2.5mg (it had to be compounded to get that), and the non-believing pediatrician fortunately let us do that, saying "starting low is not controversial". Well, we had a dramatic positive effect on 2.5mg within 3 days, and because the dose was "sub therapeutic" according to the pediatrician, and acted so fast, he didn't believe it was from the Zoloft. The reason to start as low as 1/10 the typical starting dose is from Dr. Tanya Murphy's paper here: https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype There is also other similar supporting suggestions, for example from Dr. Swedo - reference available on request!

I am not a water expert, but I do recognize reverse osmosis as being able to take a lot of stuff out (but apparently not absolutely everything). But I believe its expensive. If you could get any more information about what the offending substance is, that might help you save money. But of course, its hard to get that info, so I can understand the shotgun approach. Watch out for slick salesman that tell you some cheap filter gets everything out.

I've been looking for a place to post a trial we did with phosphatidylcholine (often abbreviated PPC), and rather than start a new thread, I thought I'd build on this one. Hope that is ok. We have been doing a trial with fishoil and PPC for the last couple of months, going on and off it, and recording results. The idea to use PPC came from a member of another small group that I am in. That person used very high doses of it (with fishoil) last year and found that whenever they were out of it, their daughter got worse. So based on that experience, we decided to try similar (but not quite as high) doses for our PANS son. The photo attached is a boxplot (aka a box and whisker plot) of two sets of results of how much soap our son used (which is a measurement of his OCD) when on or off PPC. I had to split the results into two data sets (days he had showers, and days he didn't), because on the days that he had showers, his soap use was very different - sky-high on account of the shower process. In the shower, he had to have soap suds on every square inch of his body, while on the non-shower days, soap was just up to his elbows a couple of times a day, typically. If you are not familiar with box plots, you can read about them here: http://www.wellbeingatschool.org.nz/…/understanding-and-int… . The underlying data is not ideally behaved for analysis, but the results are nevertheless statistically significant (according to something called a t-test). That means that we are fairly sure there is some positive effect with PPC, it doesn't necessarily mean that the effect itself is very significant. Note that the scale on the graphs make it look like PPC helps more than it does. He is still using 20-30cm of soap in the shower when on PPC - but that is a lot better than when he's not on PPC, so we'll take that. One downside is that this treatment costs approximately $3 a day the way we did it (high dose and taken with fish oil). Just because it seemed to work for our son (and that other parent) doesn't mean it will work for anyone else.

If you put "PANDAS stuttering" into google scholar you will see several hits definitely suggesting some connection. Here is the link to those hits: https://scholar.google.com/scholar?hl=en&q=PANDAS+stuttering&as_sdt=1%2C47&as_sdtp=&oq=PANDAS+stutter We haven't experienced stuttering per se, but we had strange verbal problems with our PANS son at one point (for a couple of months), where he couldn't think of a common word, or would say something that didn't quite make sense, jumbling things. We definitely put those things together with PANS, as he had increased in some of his other symptoms as well, so it seemed a bit too much of a co-incidence that this was independent and unrelated. And, it went away with as his other symptoms reduced as well.

Great that things are getting better! We have also had our son get worse on a couple of different probiotics. In at least one case (for us), it could not have been any kind of temporary herx with the probiotics (if they in fact can cause a herx - I don't know) because we were on that probiotic for months (so the herx would have petered out), then went off it and got better just about right away. Then we went on it and got worse, then off it and better again. I have encountered other parents that have said their kid seems worse on probiotics, but it seems relatively rare. But possibly it is more common if parents aren't careful to test, or if its believed to be a herx. We were on various probiotics for 2 years before we realized it actually made him worse. That was a painful realization - to think we were making our guy worse over that long length of time. Now I always test something new in isolation, with no other major change (that we can control) going on, to see if he gets worse on just that one thing. That is what I would recommend - one supplement change at a time with a week before the next thing.

I don't know how to distinguish between either flare getting worse, and "bad psychological effects" from zith, and herx. I feel a little more comfortable separating out allergic reactions to meds (because they are less like PANDAS/PANS flare symptoms) - and allergic reaction would be an important reason to stop the zith right away. My bias is that it might be herx, and therefore to wait it out, perhaps lower the dose if its too hard to take. For my own kid, I don't like to pile on other detoxing ideas for the first time, because you never know if he is having some reaction to those (I thought my kid got worse on charcoal when we first tried it, but can't be sure). Do let us know how it goes.

Your story is heartbreaking - I am so sorry for all of the stress you are under. I assume that you are posting here because of a previous diagnosis or suspicion of PANDAS or PANS. Just in case you haven't seen the workup recommended at pandas physicians network, scroll down to section "III Workup" at this link: https://www.pandasppn.org/seeingyourfirstchild/ . This is not a really long list (like for example, Dr. T's), but a very basic one, and one that a doctor not expert in PANDAS/PANS could respect on account of the board of expert doctors behind this website. At any rate, beyond the basic checks for strep, there is a recommendation to check for heavy metals. That part is worded in a funny way - it's called poisoning, but it's also called a non-infectious trigger. At any rate, I know of a child that had excess mercury in her blood (and hair), and her PANS symptoms did actually improve greatly when they got the mercury level down. It really does seem to act like a trigger. I have heard aluminum as another that possible trigger that you could consider requesting to be checked. Have you ever chased yeast as a trigger? For your son, though zith is good, you might consider getting a different abx, as recommended (after 14 days if no improvement) on the second page of this link: https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf .

Mold is definitely known by parents to trigger PANS/PANDAS symptoms. Unfortunately, it is not specifically named or recognized (that I can find), at pandasnetwork.org or pandasphysiciansnetwork. Search mold in this forum, and you will see some discussion on it, some just a couple of months ago. Is there any way for your brother to move out of that house?

I have no experience with IVIG, but do want to let you know (if you don't already) that there is a strong association with PANDAS/PANS and "mysterious" stomach aches. Dr. K in Chicago has said that it was so prevalent among his PANDAS/PANS patients, that he scoped many kids (i.e. camera down to stomach) - but never found anything obvious.

There is quite a bit of backlash in the comments section by one poster (cmgoodman) in particular. I don't think he knows who Dr. Leckman is, as he was suggesting we need to dismiss this and turn to our local pediatricians for necessary info. This is valuable research that needs to continue rather than be squashed by any politics.

Which ones? (If you want to discuss). I like the discussion around Myth 3 ("My child's onset was not abrupt, so it can't be PANS."), and I find the article fairly good on the whole. Maybe I missed something glaring, but it seems to link frequently to the Pandas Physicians Network, which I trust.

I'm sad to see that you have not gotten any suggestions. Even worse, I don't really have any good suggestions myself, partly because I live in Canada where the medical system is quite different. Are you on your own, or do you have any family or friends regularly checking on you?

"Solid conclusive evidence" should be defined as a double-blind placebo-controlled trial. But I wonder if that exists for something as specific as ADHD (from the description in the link you provided, it doesn't look like the ones they describe there are this kind of standard - but that doesn't mean they are bad studies, just not as solidly conclusive). I wouldn't be surprised if this kind of "really solid" study exists for one of the many other disorders you list. You could try searching within google scholar. There are a lot of anecdotes about positive effects. There are people that I trust that have said that prescription CBD has helped their child's PANS/PANDAS symptoms. We haven't tried it for our child's (PANS) symptoms - I would like to investigate other possible things whose long-term effects (especially on children) might be better known. But "safety proof" for kids is pretty hard to come by.

Hi. We haven't done IVIG, but one of the advantages of this group is the ability to search through lots of related discussion going back many years. I find the search function works better than facebook's search for some reason. Once in this particular forum, type IVIG in the search field (which is near the top right, on the same level as the ACN latitudes title). There are a lot of hits listed for IVIG!

It must be so hard for a 16-year old. There is so much to learn about PANS, including pitfalls. Have you found good resources (PANS-aware doctor, websites you can trust)?

Yes, there are a lot of people that not only talk about diet and PANS, some report significant effects with some specifics, like for example, being gluten free. We tried gluten-free for our child, and it didn't seem to help. We went off for a long time (months) and then did several strong cheats - no worsening of symptoms. So we were one of the ones that isn't helped by gluten free - but I still believe the reports of others that do get results.

Nancy, you are right - there is always going to be variability in the subjects of any study, and that is often difficult to deal with. I was specifically annoyed that they were discussing OCD and abx (minocycline) as if this was amazing new ground, without even whispering the word PANDAS in this article (i.e. the first article posted in this thread). I don't believe the researchers themselves could have missed running across PANDAS in their background research, so I concluded that either they didn't believe in PANDAS, or didn't want to get involved something they thought was a hot debate, or the media that published this story took out any reference they made to PANDAS for similar reasons. Whichever it is, all those reasons annoy me. But further to your comment, when significant observational (i.e. not placebo controlled) studies are done, considerable time and effort is spent removing the effect of what they call "confounders". They can adjust results based on known attributes of subsets of the group. This can only be done really well for large sets of data, but they had 80 subjects here. Its one thing to decide to not do anything about a subgroup that likely makes up about 25% of your patients because you don't believe you have enough numbers (I don't think that is so, by the way), but its quite another thing to not acknowledge it at all, especially when what is being done elsewhere for that subgroup is so related to your "new" research (effect of abx for OCD). This point is on top of all the other (i.e. immunomodulatory) effects of abx you point out - that too has been studied before this work was done.

We also were on minocycline for an extended period last year (months), and did not have a positive effect. We actually very slowly and progressively got worse then and later (while off it) - I doubt if the minocycline can be reasonably blamed. When I first read the original article posted some time back, I was annoyed that they didn't distinguish between the "traditional" effect of abx on a PAN/PANDAS child and this new effect. If they don't specifically talk about and exclude PANS/PANDAS patients from their study (and do that well - it has been badly done), then how do we know if any improvement is due to how abx works for that class of patients? PANDAS/PANS as a possibility was raised by some commenting to the article.

We also found abx working at the beginning, but not so much years later. Although I didn't hear/see it myself, I saw someone quote Dr. K. as saying that "eventually, all abx fail". I don't know of other PANS/PANDAS specialists that have said that, but I certainly haven't seen all presentations by all experts. Maybe they fail because after eradicating all bacterial infections, you still have non-bacterial ones. Yes, looking at other things (virus or mold triggers, heavy metals) is definitely warranted, and ultimately, if you are convinced there aren't any ongoing infections, ivig or plasmapheresis if you can get it. One caution I would have with heavy metals is the validity of tests under provocation. Specialists that give something biochemical to provoke heavy metals out of their hiding spaces and then charge high rates for onerous programs to solve the problem have been successfully sued for ignoring clear test protocols. You can read more about that here: http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html (Proper) heavy metal testing is listed as a work up by the PANDAS Physicians Network, though. We do believe our child's immune system is wacky, but haven't found what we would consider a "somewhat researched and proven" way to solve the problem other than the ivig and plasmapheresis that is very difficult for us to get. So, in desperation, we roll the dice with various supplements to see if they might help in the same way that someone else has anecdotally reported that it helps them. A sad situation, but it seems like the best we can do. Have you seen anything else for solving this immune dysfunction?

Yes, the outside poll idea was discussed in messages with admin and another member, very soon after it was realized how many guests looked, and realized they couldn't vote. I notice that there are now 13 votes among 754 views. An outside poll would be sometime in the future, as opposed to right away. In the meantime, we could collect additional questions, like yours on lyme and PANS. Lyme is certainly a significant link, as Dr. Jenike lists it right after strep as a trigger in his 1-minute video here: https://www.youtube.com/watch?v=qDuxlDWMgso I see that the published survey that I linked to above is no longer available in full for free (it was for a while, and I managed to download the .pdf while it was). But it did report this: "Lyme disease (Borrelia burgdorferi) was confirmed or suspected in 33 patients (5%), and Lyme coinfection was confirmed or suspected in 26 (4%)." If that sounds lowish, it might be if they stuck to the strict CDC criteria for lyme. I don't know if that is the case (the questions weren't published), I am only speculating. One problem with directing people in this specific group to a survey about lyme, is that because the group is called "PANDAS/PANS Lyme Included", it could have a selection bias. That is, compared to the fraction of lyme among PANS/PANDAS in general, the fraction in this group might be higher just because those with lyme may be looking for a group that specifically discusses lyme as a trigger. So to get the real fraction, it should be polled from an unbiased source. And, the criteria for the lyme diagnosis needs to be clear.

I don't know much about rheumatic fever. Don't be surprised if you know more about it than the doctor you see - unless they are specialists in the area of a disease, I believe that it is not hard (with a few hours of research) to get as much or more information (and more up to date) that whatever the doctor last read, whenever he/she last had time to really dive into the latest understanding of a rare disorder. This only to avoid disappointment, and to say that your own knowledge, tactully inserted, could be very helpful. If you google the half-life of your abx, you might be able to reasonably conclude whether there was enough abx still in your system (2 days after you stopped) to cause the anxiety and other symptoms. Does the abx have those symptoms listed as a possible side effect? Are you familiar with herxheimer reaction, and did you have a good distinction between herx and allergy at the point you stopped? If you had a PANDAS-like reaction, that could have been part of a herx, which often lags the introduction of the abx by some amount of time. Good luck with the doctors appointment tonight.

We are not in Portland, but wanted to encourage you to take courage - you are not alone. How long has your son had OCD symptoms? Our son (now 13) has been unable to do school for over a year, but he has improved recently, and we are hoping to get him slowly back into some school work at home with Khan Academy.

We have up to this point had 584 views, and 11 votes in this poll (this is because most views are by guests, and votes are only by members). We're going to run the poll a bit longer, but to keep up some interest for all those that have viewed or voted, I thought I would share a very large, professionally done and analyzed poll: http://online.liebertpub.com/doi/10.1089/cap.2016.0105 This was just published this year, but it has been some time in the making. When I first skimmed it, I thought it was saying things that many of us knew well from our own experiences: "... a high rate of medical comorbidity suggesting generalized immune dysfunction, a profound impact of PANS episodes on functional status, and a role for early resolution of infection through antibiotic treatment ... ". Yeah, what else is new. But when I read in detail, I found that there is a tremendous amount of information here, including some truly new things, some of which I have been wanting to know for a long time. For example this result at the top of page 6 (right hand side) in the .pdf version: only a little more than half of all PANS/PANDAS patients get complete resolution of their symptoms. In fact, it it just under half (49%) if the patient never got completely better (even for a short time) on abx, and well over half (62%) if that did happen. The paper quotes some fancy statistics for the confidence in that difference (49% vs. 62%), but what I would have liked is the basic confidence of either or both of the 49% or the 62%. But it must be very high confidence given the sample sizes they had. Unfortunately, my kid is in the 49% group - he's always had some symptoms even after long courses of abx. So now I know he is just slightly more likely than not to have some effect for the rest of his life. There is lots more here too - I'll poke further if there is interest.

Does the doctor want to see that long-term zith works on PANS (in which case the 2 studies that jan251 linked are good), or is she concerned mostly about bad side effects from long-term zith? If the latter, type "azithromycin long term treatment" into google scholar (https://scholar.google.ca) and you'll see all kinds of studies of patients that were put on long-term zith for various reasons other than PANS. Of course, if the disorders are life-limiting (such cystic fibrosis), doctors and parents won't be as concerned about side effects if the treatment helps the condition significantly. But there are tons of studies there and several are bound to say something about side effects.