momto2pandas

We have never seen anything that delayed, as far as I know. So hopefully you are out of the woods!

We have seen ramp up after both acute allergic exposures and chronic ones (seasonal) in my ds6. Interestingly, they are a little different than the infectious flares - more really bad mood, irritability, defiance, but not really any OCD or urinary issues, and very, very light on tics. So I'm not sure if it's really part of "PANDAS" or if it's just a separate allergic reaction. The quick behavioral reactions to foods, though, were what led us to do food allergy testing for him in the first place. Ds3 has no allergies.

I mentioned it in a previous post, but both Dr. Greene in Highland and Dr. Mabudian in Redlands have written for all of the tests my kids have needed - and have done it a number of times. They both have several PANDAS patients. They don't treat it long term but both have gone through the diagnostic steps/bloodwork. PM me if you're interested and need contact info.

We are in southern California. My kids were diagnosed by Dr. Gerald Greene at Beaver Medical in Highland, despite low ASO titers, and I know that he has diagnosed others. He actually diagnosed ds6 the very day we came in with sudden onset OCD. One of the first things he asked that day was whether he had recently had an infection. He is a "believer" and has prescribed courses (many) of antibiotics for infections associated with PANDAS symptoms and for prophylaxis for dental work, but to date, has not been completely comfortable with managing longer-term treatment, particularly in kids who also have immunity problems and negative ASO. It's not that he doesn't think it's a good idea; he just doesn't have the expertise to know exactly what's needed and he doesn't want to make a mistake. However, he has agreed to work with Dr. B. on the phone to prescribe what he directs and has expressed that he is willing to prescribe and to oversee IVIG at Beaver's IVIG infusion center if one of the experts recommends it and the insurance approves it. We are only at the stage now where the two docs are supposed to be working together on the phone (I haven't heard the outcome yet), but if that geographic area works for you, I can keep you posted on how it's going. We love him as a pediatrician overall - he's very thorough and receptive, open-minded, and good with the kids, and he'll spend the time to really study the test results etc. It's hard to get a same-day appointment, but we can always get a same-week appointment and his nurses will always pick up the phone to address concerns or questions quickly. Dr. Goyne, his partner, is also great and quick to cover if Dr. Greene is out. The practice also has a 24-hour nurse line for round the clock support. Northern or Southern? I am looking for one in southern part. Thank you

I am guessing that we will need to make 2 trips, but that has yet to be determined. We won't have a phone consult first (I don't think he does that). Our insurance covers him if we actually go to his office, so the truth is that it's actually cheaper for us to go out than it would be to pay for two phone consults (maybe 3 - I might see him myself while I'm out there). I would also prefer that the kids actually be examined by someone who knows PANDAS-like illnesses, especially since the neuro symptoms are starting to bug me out (major word repetition [goes away on Advil!], numbness of hands and sometimes whole leg, etc.) and I want ds3's massive sinus congestion/adenoids and ds6's breathing problems checked out, etc. Also, we have loads of family and friends in the area that we are overdue to visit, not to mention business out there, so we're kind of looking forward to the trip. The good news is that our pediatrician said that he would work with whatever Dr. B suggested. If Dr. B does want IVIG (which he told me on the phone that he probably would, based on their labs/infections) and the insurance approves it, and if Dr. B doesn't mandate that we go out there for it to be supervised directly by him, our pediatrician said that he would be happy to arrange it according to Dr. B's instructions at an infusion center that is part of his practice, and would be happy to oversee it. We do have 2 doctors out here who are very experienced with IVIG and are believers in PANDAS; they just don't feel experienced enough with PANDAS kids to design the treatment and don't want to make any mistakes.

It is always between day 3 and 4 that we see a reprise of symptoms. Just when we are starting to get a handle on the infection, the course ends and it takes precisely 3-4 days for things to go south. It's been so many times now, we plan around the cycle. Day 4 of the 5-day course of zith is the best - the kids are 100% in every way, and we go to Disneyland or do other special things to enjoy them. I almost feel like we're on some sort of visitation/custody schedule! Day 5 is equally good, except that by that time I'm getting depressed that it's the last day of the course. Day 6 (off) and Day 7 (off) continue to be good for them, but I'm get increasingly anxious and watchful. By Day 8 I'm on eggshells and trying to figure out how we're going to beg our next "fix". By Day 9, things are going south. The truth is that they never get THAT bad, just really snarky and irritable with a few tics, but 10 repetitions of this cycle has begun to make me depressed. (We have a trip to the east coast planned for next month to get with Dr. B and hopefully end that depressing cycle once and for all.) In the past, we would take the usual courses of antibiotics, get over the infections, and be good for several months. This time, we are experiencing the above, repeatedly. No ASO or Mycoplasma on titers, so I'm not sure what we're dealing with, but it gets better on abx, worse again 3.5 days off. Perhaps you are going through the same kind of thing. Incidentally, their immune tests appear to be kind of helpful here and you might find it helpful to get these done as well. The very high lymphocyte subset numbers suggest that they are still fighting infections even after the antibiotics are done. And the ratios, apparently, are consistent with intracelluar infections. Their IgG, etc. numbers show that they have deficiencies, perhaps explaining why the infections don't go away. Their pediatrician and immunologist here aren't really sure how to treat the full pattern of their immune results, hence the trip out to see Dr. B.

I think that the PTSD burden is one of the bigger ones that we/our kids bear. In some ways, it's just as bad to spend a lifetime worrying as it is to go through an episode. Over time, though, I guess you worry less. Well before I had kids, I thought about the PTSD aspect from my own point of view. Having had anorexia nervosa that came on out of nowhere literally overnight, drove me down to a 40% weight loss in a matter of a few months, socked me in hospitals for two years with what I was told was mortal physical damage and little chance of getting out alive, and then disappeared again overnight such that I gained the weight back again within a couple of months and returned to health - was bizarre, to say the least. Even shortly afterwards, I could not relate to that anorexic girl whatsoever - I felt like I had been possessed. Although the anorexia itself completely ceased, the PTSD aspect of having basically been kidnapped and held at knifepoint for years stayed with me for a long time, and I really never got support for that. Everyone congratulated me on having gotten better, as if it was something that I had done out of my sheer will. The psychological support I got missed the point all along - it assumed that anorexia nervosa was something that I was doing and that healing weight-wise signified that the psychological issues were past, rather than assuming that it had been something that had happened to me and that the psychological issues/shock were in some ways just beginning. That "PTSD", while not marked by some of the usual features like flashbacks, etc., had a big influence on my life for a long time. In my late teens and early 20's, I felt that the "extra time" I had gotten by surprisingly getting better was sort of a random lottery winning and that there was no guarantee of any future for me, and so I was VERY reckless with my life - even compared to others that age. If I had no control anyway over whether I lived or died, functioned or didn't function, etc., then why not go for broke and test fate? I'm lucky I lived through THAT. If my kids ever do what I did, I pray that I will never know about it.... Once I settled down a bit in my mid-20's, I always had a low-level paranoia about my future, assuming on some level that a time would come when I would be hit again and wouldn't be able to work, cope, function...so I worked very hard and long hours, scrimped and sacrificed and saved my pennies to ensure that when I got to that point, I was able to get medical care and take time off without becoming basically homeless, if I couldn't work. That put me in a nice career and financial position eventually given that I never did become disabled again (at least not yet!), but it's kind of sad way to spend one's youth -- always preparing for disaster rather than looking to the future in a more balanced, normal, positive way. If it weren't for the experiences I had had as a teenager, I would have had every reason to expect a very bright future that I had some control over. Nevertheless, that's reality, at least it was for my generation. Hopefully it's not reality for our children. Now I feel pretty much out of the woods myself, but I still feel like I need to prepare, save, etc. for whatever might befall my kids...hoping and praying all along the way that we are on the brink of established better solutions for them than I had, so that they/I don't need to live in fear. It's hard for me to even think about what my life would have been, or could be, like without the burden of worry about the worst case. I think it is very much like cancer in that way. A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.

This made me CRY!!!! And right in the middle, one of my clients called.

My sons get bright red ears too. Somewhere I read that bright red ears are a sign of allergy. In my kids, allergies are related to some ramp up in symptoms, but not as much as we see with bacterial infections. So maybe that's what's going on with you?

Hm, that sounds like the opposite of what I've experienced! Go figure, maybe I am a one-off after all!

By the way, low TSH, per your subject line, means HIGH thyroid hormone levels, i.e. hyperthyroid.

My guess - at that point you would need to control the chronic inflammation, much as you do in a state like rheumatoid arthritis. Maybe using IVIG, maybe using other anti-inflammatory therapies. Certainly hit bacterial infections with antibiotics, but you have a lot of inflammation that's not going to be due to bacterial infections, and then what else can you do? This goes back to my old "top things I've learned" post about managing PANDAS over all of these years in myself (early Feb.) Gotta keep allergies under control, keep infections under control, and keep inflammation in general under control the best you can. For me, my regular regime of supplements/lifestyle, high vigilance re. infections, etc. has worked quite well over the years (granted I am ANCIENT compared to the kids you're talking about, hence probably quite different in many ways), but I am sure that there are others who would need more aggressive therapies.

I posted in my "top 10 things I've learned" post a while back ago (early Feb) about my thyroid odyssey. It was a huge part of the puzzle in improving my state once I got to be a young adult (early 20's). During that time my thyroid had gotten to where I was showing up on labs as extremely hypothyroid, but the tricky part came in the titration of the dose to get me back up to the levels I needed. The issue I was having was that T4 wasn't converting to T3 (the most active form) efficiently. You can read more about it in my old posts, but in order to get the right amount of "active" thyroid hormone in my system, my dose needed to be titrated to where the TSH was actually out of range in the other direction (so by TSH I appeared to be hyPERthyroid once I got to the dose of synthroid that actually made me EUthyroid clinically and by T3 [EUthyroid = healthy levels]). At the time it seemed like another one of those "weird one-off things about me" that I was getting used to being diagnosed with; now we know that elevated levels of inflammatory cytokines (present in e.g. chronic infection and inflammatory states) interfere with T4 to T3 conversion and can thus cause clinical hypothyroidism, even in the absence of anti-thyroid antibodies. You can also test for anti-thyroid antibodies to see if that's the problem - it's pretty common in autoimmune states. Bottom line - if you're investigating thyroid issues, don't just have them do a quick check of TSH (which is frequently what is done) - have them check T4 and T3 too, to see if it looks like the conversion is going the way it should. Interestingly, high dose synthroid has been found to be an effective treatment for rapid-cycling bipolar conditions (= pronounced mood lability) and I have wondered if this might be because these patients had the same issue that I had...not enough T3 in their systems....though they may not ever have discovered it if they were only getting the standard thyroid tests. Just my 2 cents! Your mileage may vary!

On the speech, yes, I always thought that the speech thing was my younger son just being little, and my older one being excited. As my little guy has approached 4, though, and has progressed so dramatically with vocabulary, grammar, etc., it has seemed odd that this has persisted. I went for the speech evaluation for the heck of it, and was surprised to find that the SLP already recognized this pattern as typical of PANDAS and abnormal for ds's age. I had noticed that it correlates pretty much perfectly with their infection/antibiotic cycle (having gone through 9 on-off rounds of this cycle in the last few months makes these patterns easy to spot!). I have wondered if it has to do with "word finding". I know that when I have had episodes, I have felt a delay in calling forth the words I am looking for. I wonder if when my kids get "stuck" in that way, they go back to the beginning of a sentence and do it again and again as a way of pausing until their brains find the word they are looking to say next. I don't really know anything about the neurology of speech - this is just pure speculation. At their ages, they don't feel self-conscious about it, but it's another one of those things that I want to get resolved before they get to the ages where they do feel self-conscious.

What about an adult? I don't particularly want to do this myself, but I still wonder if the BIGGEST group of undiagnosed PANDAS out there, in terms of sheer numbers, are adults who started as young kids and never grew out of it. They may not be as severe as the kids and are probably much harder to diagnose due to ubiquitous PANDAX, but I'd bet all my $ that there are millions of them out there. With all of the media attention just on kids, somehow the question "what happens when these kids grow up?" needs to be addressed, IMHO.

One other thing that just occurred to me in the shower: what about neuro symptoms that aren't considered psychiatric? Are sensory issues/symptoms ubiquitous enough to fit in there somewhere? What about other things, like speech issues/changes, handwriting changes, etc.? My kids express sensory issues and speech changes (starting words/sentences multiple times) much more than they do "psychiatric" symptoms, I would say, and the sensory/neuro issues started much earlier. Speaking of which, my ds3's speech pathologist said that she's had other PANDAS patients and that his particular "dysfluencies" are characteristic of PANDAS in her experience. Has anyone else seen this or has this been noted anywhere?

Forgot to mention that you may also want to add anorexia nervosa to the list of "characteristic" or "possible" neuropsychiatric symptoms. I'm betting that PANDAS is at least as frequently overlooked as a cause of anorexia nervosa - probably more so - than it is as a cause of OCD or tics. And given the morbidity and mortality (and healthcare expense!) caused by anorexia, this is particularly tragic. Adding it as an example of a possible manifestation might help to bring to mind that PITANDS should be ruled out for cases of abrupt onset anorexia, particularly in the younger set and in the absence of obvious psychological risk factors.

I like it VERY much (as you know my vote has been to broaden the criteria for a long time), but why not include an autoimmune component? Especially given that the "A" is still in the name, shouldn't there be something about "A" somewhere in the criteria? Could be as general as something like "generally associated with evidence of autoimmunity e.g. comorbid diagnoses, autoantibodies, etc." Otherwise, aren't there infections that could directly cause neuro symptoms and that you would want to distinguish from PITAND (Hep C, syphilis, maybe even meningitis, other febrile conditions, etc.) - especially since you're being very broad with the possible range of neuropsych symptoms and not requiring acute onset? Might also want to say something about "appropriate" antibiotics, since obviously most will not improve with the wrong antibiotic. Also, are you saying that for Type 2 PITANDS, you don't specify the agent, i.e. S, M, or F, as you do for Type 1 PITANDS, presumably because you might not easily figure it out given failure to produce a serological response? If that's true, then it might be difficult to meet the general criteria #3 since it might be difficult to actually "identify" the specific infectious agent, even though you can see that an infection is happening. Can you really diagnose this down to age 0? How do you identify neuropsychiatric symptoms in a young infant? How does Note #2 at bottom work into the classification? I'm thinking, for example, about my 3 and 6 year olds, who were just immunologically tested for the first time. How would I know if they were the Type 1 group and had become immunocompromised over time vs. the Type 2 group? They did have a bunch of early infections, but so do a lot of babies. Is this meaningful for treatment? My guess is that most cases don't get immune testing until after PANDAS has been diagnosed already and then how do you know if you were Type 1 with immunolopathological sequelae vs. Type 2?

Just remembered that my older son and I had Salmonella right after his first birthday. We were sick for 3 weeks! That's flagellated, isn't it? I remember this because I had a bad reactive arthritis and my doctor thought I might have had Reiter's Syndrome. Turned out not to be (don't recall exactly how it was ruled out). Don't think we ever got my son cultured but we had been eating the same cake batter when it started. His constipation issues started probably about a year after that.

p.s. My kids are both looking to be chronically infected with something (pan-lymphocytosis in the context of immune deficiencies and after 8-10 rounds of antibiotics) but are coming up negative for both ASO and myco P. PANDAS is not acting up too badly considering that they're always sick, but is this p41 something we should check? One has very bad constipation issues (enough to have been hospitalized briefly with impaction and fever - this was a couple of years ago, though); the other has diarrhea episodically. Neither complains of pain or urgency or has anything that looks like IBS to me. What is the treatment for these chronic GI infections?

If you get desperate for data on this, I had both Lyme Western Blot and fecal cultures done 15 years ago or so at pretty much the same time. This was when I had the drug-induced lupus episode but before figuring that out, they looked for everything else, and I was having real gut issues back then. I don't recall the specific results. This was not long after I came back from years of field work in the third world and there was all manner of lovely stuff in my gut during that span but I don't remember what may have been left at that particular culture. Not sure anyone keeps medical records that long but one could always check.

I never knew this had a name! I will have to look up Opsoclonus Myoclonus. Is it considered a tic, or something else? If this is not a tic, then I guess neither of my boys has ever had tics since this is the only one we've seen (and only in one of the kids.)

Yes, I agree about the anti-inflammatory effect. I think that's why my kids seem to feel and look dramatically better on Azith even though it doesn't seem to be killing whatever infection this is that they can't get rid of, and why they start to look bad (circles under eyes, etc.) within a couple/few days off. Yes, the "biologics" (like infliximab, etc.) and other RA drugs were my babies when I worked in rheumatology clinical development. I've headed up clinical development programs on a few of them (not including infliximab), some of which are now on the market. I've been thinking about these for PANDAS for a long time and wanting to get feedback on their use from some experts. I still consult for some of the companies that make them. I actually had a meeting arranged to talk with a VP at one of the companies about it, but had to cancel when I got too swamped with other work for that same company. One issue is - they are generally contraindicated in people with known serious infections or immunodeficiencies, since the theory is that inhibiting inflammatory cytokines inhibits the immune response -- and serious infections have been seen in people taking these drugs. Given that I think a lot of PANDAS patients already have infections that they're having a hard time with and/or have immunocompetence issues, they probably wouldn't be a good choice for that group. Probably not too different from steroids in that regard. However, I think there may still be a subset of patients for which they could produce relief. Dr. T's theory about a "hyperimmune" subset comes to mind. These drugs are expensive, too. And I have wondered about COX-2 inhibitors, which in theory should also work and which are much less expensive, since they aren't biologics. The fact that Advil (a COX-1 and COX-2 inhibitor) helps so many suggests that the COX-2 inhibitors could help more. Don't have any direct contacts to talk to in that area, though.

I have to say I kept squinting at my TV to see if the kids had dilated pupils or showed any signs of tics! Most of them did not but there was one girl in there whose eyes did look like saucers to me. She had dark eyes, though, so it was hard to tell... Didn't sound like any of them had any real periods of relief, though. Probably also hard to tell what is going on when they're on so many meds at this point.

One of my concerns about IVIG is that it's a blood product and there can be supply issues... if millions of children (not to mention probably adults) need it, where are we going to get it? My understanding is that there have been IVIG supply issues in the past just trying to get enough to treat deficiency patients. That's why I think that other, perhaps anti-inflammatory, approaches will need to be investigated eventually as well and we will need to really figure out if IVIG is actually "fixing" things by retraining the immune system or just providing an effect (helping with the BBB permeability) that could perhaps be gotten with other products that don't rely on the blood supply. Kim has really gotten me thinking about in vitro studies that could be done... though it's all kind of dreaming since I don't know that much about the limitations of in vitro studies of these kinds of things.