bobh

Well thanks for the education, llm. The idea of diflucan for lyme is something I haven't heard (our son never tested positive for lyme, so I am not in any lyme groups except this one). I wish some others would take up the cause and duplicate that German research you quoted, as it has been well over a decade, and I see from publications in both U.S. and Europe that fluconazole treatment for lyme is not being accepted by the mainstream. "Not enough evidence" they say here https://academic.oup.com/cid/article/43/9/1089/422463/The-Clinical-Assessment-Treatment-and-Prevention and here http://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331.2009.02862.x/full . Have you read this discussion: http://cid.oxfordjournals.org/content/34/9/1281.short This is titled "Why Prior Fluconazole Use Is Associated with an Increased Risk of Invasive Mold Infections in Immunosuppressed Hosts: An Alternative Hypothesis". I haven't read through it myself - just thought you might be interested given your child's symptoms and your plan.

Yes, comparing the 2 week interim and the 36 hours, I would say it is a much much higher chance that the abx and steroids did it. Is your doctor suspecting yeast, and have you ever done nystatin or diflucan previously? They can work differently, but if you are looking to do battle with yeast, we had good results with nystatin, which tends to not absorb into the bloodstream (where meds create their side effects), but rather stays in the digestive tract where it does its work on yeast. So that makes it a very safe med in my view. Herx can be significant, though.

We had a horror story with a neurologist's evaluation, because he flat out refused to believe that PANDAS (or PANS) is real. We basically got a dual diagnosis of Tourette's and "psychogenic seizures". They (neurologist and student) didn't take the time to ask about the tics they felt they saw right there in the appointment - they were actually an OCD routine (our son used to wipe his eyes on a clean section of wall whenever he saw something that he thought was dirty) - if only they would just ask us what we thought!. On the wall of the office facing the doctor was a sign "Parents know their children". Our misdiagnosis happened to precipitate many problems for us. Those downstream problems we probably could have mitigated better, but we were in a state of shock with the result because we were led to believe that we were seeing someone knowledgeable in PANDAS/PANS. So my advice would be to ensure you have someone who not just says he knows about PANDAS/PANS, but believes it as real.

The only similarity with our story (so far) is that our symptoms also went away (except for some small lingering anxiety) for a time (actually about 2.5years) and then returned with a vengeance after a sickness. But initial severe OCD was at 6, and subsequent flare was at 9, and he is only 13 now. At 9, we did find infectious triggers that, after clearing (or at least, we think we have cleared), he did improve. Though he is much better than he was at 10, he is certainly not 100% ok yet. We were hoping that puberty might help, and so your story is sobering on that possibility. What we happened to find (through an Igenex test) was ehrlichiosis. That is another tick-borne disease (we did take a tick out of him at age 5 and kept it for many months, then threw it away). The other thing that helped us (though only in the long term, with hindsight) is a tonsillectomy. My best guess is that, with her immune system the way it is, something else is still triggering now. It may be impossible to find all triggers, but when we find one with our guy (e.g. an ear ache that seems to turn into an infection) and deal with it, he gets better. The list of possible triggers is so long - don't forget to consider mold and seasonal allergies, as well as infectious agents. Even though her strep shows negative, with all the occult strep (hiding out in biofilm like sinuses, etc), have you ever tried abx for longer than the standard course? Dr. T. once mentioned (on a Radio PANDAS show, I believe) that after treating a child, he noticed that the mother (in her 40's?) had a tic. She tried a course of abx at his direction and her tic went away. So sorry that the long road that looks like you were through, has gotten longer again.

Now that is very interesting! I don't know a lot about lyme, but when we tested with Igenex, what came up right on the very borderline edge of positive was ehrlichiosis (another tic-borne illness, also treated with tetracycline abx's). We had been on doxcycline for a couple of weeks before the blood draw (a long story), and I always assumed that, had we not been on it, the result would have been stronger positive. But putting_together_the_piece, you are saying that had we not been on abx, the result would have been below the threshold - and we would not have been diagnosed with ehrlichiosis! When there is a lower limit for a threshold, and provocation changes the response, there have to be rules about whether the limit applies with or without provocation. This is well established in heavy metal testing, where provocation can bring out strong test results that otherwise would be below a threshold demanding attention. The tests are specific about "limits not valid under provocation". There have been lawsuits about just this, and the doctors doing the provocation and proceeding with (expensive) treatments with the provoked test results have lost in court - the protocol for the test and how the threshold limits apply are quite clear. The patients didn't get better, and successfully argued fraud. But antibodies are not heavy metals, and I don't understand what provocation means as far as antibodies are concerned. But Igenex has a lower limit on some of their test results, that they clearly label as "not positive". I would really like to know what Igenex (or even the CDC) says about abx as provocation!

If an allergy is causing pans symptoms, it should still be classified as PANS. This I get from the figure below, which comes from http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/ : In the non-infectious triggers of the lower branch is environmental factors (which can be allergies). Although you should cut out wheat regardless of whether it is a wheat allergy or whether it is PANS, there is (in my mind) a significant difference between allergy and PANS, besides the typical symptoms of each. PANS seems to develop other triggers over time. Some other time, it could be strep, or some other bug that the child encounters. It seems like you have already seen that. But a food allergy could also be prompting the immune system and also causing a PANS flare. This is why some PANS kids improve when gluten is eliminated. I wonder if "daughter has never had any kind of classic allergy symptoms or reactions" is just like the PANDAS child that flares with strep, but doesn't seem to have a particularly red or sore throat, or any other symptoms of strep.

Hello, So sorry to hear your difficult story. But so much of what you say has been familiar to us with our (now 13-year old) PANS son. Our son has had extreme difficulty in making a decision in the first place, rather than changing the decision repeatedly. I see some of what you describe as some of the many faces of OCD. I think of OCD as having a thousand faces - even more, ways to present. The enuresis (needing to pee all the time) is also one of the well-known symptoms of PANS. If it were my son and my resources (financial and time), I would tend to not pursue a second lyme test, but check out mold as an initial cause. Environmental causes are one of the branches of PANS, as you can see from the figure at http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/ (need to scroll down to see it). The lower branch is "Non-infectious triggers", including environmental factors. Surely, mold qualifies in that category. If you are no longer in an environment with any mold, the current problem may have moved on to an infectious trigger (for example, a flu or bug going around at that camp he attended in 2015). PANS can start with one trigger, and move on to have other triggers. I don't know Dr. Shoemaker or Dr. Nathan, so can't say anything for or against either.

Being in Michigan (and with a mystery bite to boot) certainly keeps very real the positive your daughter have for lyme. I echo other's suggestions here to chase the lyme treatment - sooner is better than later. Will you have a hard time finding an LLMD in Hawaii?

I know of a couple families in my area where both or all 3 kids have PANS or PANDAS. I think that the number of families that there are like this is a very strong indication that there is a genetic susceptibility. That is not surprising for an autoimmune disorder.

Sorry, haven't done Keflex prophylactically, but if you don't get a response specific to that, you can answer the question about splitting in two or not by finding out the half-life of that abx. If it has a long half-life (days) rather than a short one (less than a day), then splitting in two doesn't really matter. Now they can sort-of simulate long half lives with time-release meds - but they are of course more expensive.

Canadian lyme tests that are covered by our healthcare system have (in my humble opinion) a high false negative rate (they are like the CDC tests - very conservative). Only a few doctors recognize that, some doctors including at reputable institutions don't accept that there is even such a thing as chronic lyme. So, it is another controversial minefield of trouble in the medical system. You could get the canadian test done (if you can convince an MD to order it for you - that is itself sometimes a high hurdle), and if it comes back positive you can certainly run with that result (i.e. false positive rate is very low). We did our test at Igenex in the U.S. That test needed a medical practitioner to order, sometimes naturopaths can do it as well as MDs.

Oh sorry - didn't mean to imply that our son was staring, it's just that when we got his attention, he would be able to look at us straight in the eye, but not to speak. The neurologist that diagnosed him with Tourette's, explained this (we showed him a video) as " psychogenic" - due to psychological causes. Boy, were we ever upset with that. We did check for lyme and coinfections, and found ehrlichiosis, which was treated with abx.

Oh ...do check out lyme if you think it is relevant - it is also a known PANS trigger. For an authoritative voice on that, check this 1-minute video by the chair of the International OCD Foundation's Scientific Advisory Board, Harvard med school psychiatrist Dr. Michael Jenike: https://www.youtube.com/watch?v=qDuxlDWMgso Near the end, lyme is listed as one of several possible triggers.

We are also in Canada, and although there are very few doctors recognizing this disorder, there are a few, and some good support groups. PM me if you would like more info. We too have faced many a dismissive doctor. We have had many similar symptoms that you describe, more OCD (handwashing) and less rage (though he has broken 2 walls, that is over several years - so pretty calm compared to some). I haven't heard of actual real seizures being associated with PANS or PANDAS, but we did have seizure-like symptoms over a few months. We knew they weren't real seizures (because he could look right at us and we knew he could hear us, but he couldn't talk). Even if your son's symptoms are true seizures, I would think (this is going out on a limb) that brain inflammation (which is the presumed process) could be connected to seizures. With all the other symptoms you describe, I thing you shouldn't let this one thing slow you down from pursuing the idea of treating as PANS or PANDAS.

I don't know about stopping abx too early, but we have had the experience of going back to an abx that worked, and having it not work like it did before. Another parent that I know has reported this: "when we first started with amoxicillin it worked very well - when we stopped using it and then came back to it - it no longer did anything. Augmentin did well for a good long time, then that too stopped working." I am not sure of the timings for the experience above. I always thought that with our own experience, that because of the time span, it may have been a different bug causing the flare, so that it was just a case of the wrong abx for the new bug. But I have also heard (indirectly) that Dr. K (a long-time PANDAS/PANS doctor in Chicago) believes that eventually, all abx fail (meaning, you have to keep on trying others, and then eventually if you run out of good abx options and don't get relief, IVIG is the solution). In your case, you probably are still dealing with the same bug given the short time span. If it doesn't work, don't hesitate to push for a different one.

Yes, I am afraid that this is not working well - mostly because guests cannot vote. There have been over 200 views, mostly by guests. Even if we don't get an appropriate number of responses here, I will at some point still publish the hypothesis, with the results from the other poll, including why they might be suspect.

I understand 25mg to be a "normal" starting dose. But because you didn't have a significant worsening from that dose, all is well. Just in case there are others following and interested in Zoloft dose, the really low dose for SSRI that may be necessary for PANDAS kids is described in this paper by Dr. Tanya Murphy and others: https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype This basically says that some PANDAS kids (14 out of 38, or about 37%) get profoundly worse on that kind of SSRI starting dose (25mg for Zoloft, which is a trade name for sertraline). It is because of this paper that we started at 2.5mg. Because we had such a dramatic improvement, I suspect our son is one of the sensitive ones.

If the augmentin/biaxin is a prophylactic dose, it may not be doing the job because it is too low. Alternately, if it is a good strong dose, then the strep got a hold despite it's presence - so maybe your son has a strain resistant to these abx. Hopefully, the ENT might recommend another abx to try.

Thanks for your question. We are avoiding stating further details about a possible link between the birth mother's blood type and PANDAS/PANS in the child, until after the poll closes, because responders knowing certain details might cause a selection bias in the responses. That is, if responders know its about a specific blood type, more people of that blood type might respond. That may be what happened in a similar poll done on a facebook group, where it looked like there was an overwhelming association. But, the way that poll question was worded may have caused more moms with the blood type to respond, so this poll distinctly avoids that problem by being "mum" on specifics. The question was asked by a mom in small town rural Ontario, Canada, and I was just intrigued to pursue it. So, this is "Vanessa's Poll". Note that mere association cannot say anything about causation. So if there is some link, there could be several different possible causes for the link (for example, one of them could be a genetic one). This poll cannot determine which of any of a number of explanations (i.e. causes) are true.

I believe mold to be a trigger, but don't have the experience of having pervasive mold and moving away from it. I only have one experience where we were emptying a potted plant that had gotten very moldy. We got it outside relatively quickly, but our PANS son had a particularly bad evening that day. Maybe co-incidence, maybe not. Mold is not infectious, so I don't think you will find it listed on the PPN network as a cause. Some doctors will say that if mold is causing you a problem, you have a different problem, its not part of PANS or PANDAS. But there are (PANS-aware) doctors that say the opposite. I personally believe the latter. As for moving in 4 years ago, it could very well be the case that it took time for the PANS to develop, and also that a PANS child becomes particularly sensitive. Strep is all around, but most don't get the first full blown flare until multiple or chronic exposure. I think llm's idea to have the child away from the home temporarily is a great test. Make sure she is not moving into a house where someone is sick, or where there are any other known triggers for your child. It is also important to note if the symptoms get worse moving back in again - because (with all the waxing and waning of symptoms that go on), it is too easy for any one-time decrease in symptoms to be a co-incidence.

Our PANS son has -/- for C677T so I have no experience on your question about folic acid/methyl folate. But I would like to ask: what was the sub-therapeutic dose of Zoloft your son saw improvement on? We started 2.5mg of Zoloft (in a liquid form) after about 6 days of a 6-hour (or more) bedtime ritual (and many many days of 3-4 hours before that). On the evening of the 3rd day, he took less than 30 minutes to get to bed, and reduced further and stayed low from that point on, even when we got off that small dose. He did pick up some increased anxiety (apparently) with the Zoloft, however. When we had other (different) OCD symptoms maybe a year later and tried Zoloft again, it didn't seem to do anything, even after increasing to 5mg (which is still very low).

Our kid definitely forgets to eat. He makes up for it eventually by eating a lot, but he readily lets himself get there.

I would call hair pulling just another form of compulsion, consider it as OCD-related, and look into PANDAS or PANS.

We haven't had anorexia - I am just picking up on one thing you were told "In FBT they don't care how the anorexia came on .. it's all treated the same." I feel that the PANDAS diagnosis does make a difference in how best to approach. One size fits all sometimes doesn't - but it certainly is a lot simpler to dispense. Yes the Zoloft is scary, but if you start really really low, it is much more likely to be fine. A dose of 2.5 mg for our then 10-year old worked so quickly and well, that the prescribing doctor didn't believe it st first.

It seems like a tough call, but I would tend to agree with jan251. We were on probiotics for over 2 years, and then finally, we decided to test by going on and off several times. It turns out that (at least for the 2 we tested very separate in time), the probiotics made him worse. It was a little subtle in our case, but clear when we repeated (we were measuring how much liquid soap he used per day washing hands - because that was a non-subjective indication of his OCD level). Probiotics are actually the first thing we put him on, and I can't help but worry now that we made him worse in that very first horrific flare (we never went back to test that particular first brand we put him on). Oh - and for at least one of the probiotics we tested, it was definitely not herx, because we had been on it for months before we went off for the first time with the test. I thought it rare for a PANDAS/PANS child to react badly to probiotics, because I have only heard of 2 of moms who said their kids were definitely worse on them in general, and so many using them. But there might be people that, like us for more than 2 years, didn't know the probiotics were making symptoms worse.