momto2pandas

Also, re. the infection vs. autoimmune disease, did those with Lyme disease also test positive on Cunningham tests for auto-antibodies (anti-dopamine, etc.)? To me, positive tests there would indicate autoimmune activity with expected impact on the brain... and not just direct effects of infectious agents. I'd be curious about looking at the Lyme folks vs others with respect to this.

Another important thing to keep in mind for anyone reading this thread -- In our case, we do monthly IVIG NOT just for PANDAS, not even primarily for PANDAS. As you may know, there is a link between immune deficiency, autoimmune disease, and cancer - especially but not exclusively lymphoma and melanoma. For those of you with kids who have "true" primary immune deficiencies and PANDAS, obviously you've already checked off the first two boxes. Of the suspected untreated PANDAS in my family (those with frequent infections, autoimmune disease, and psych/neuro sx), about half got one or more of these cancers by the time they were in their 30's, and the numbers increased with age. I've seen two immunologists (including Dr. who both feel strongly that I need monthly IVIG for this reason, even though it's been many years since I've had appreciable PANDAS. Immune deficiencies can also go along with eventually-serious gut and other issues. So one BIG caution - if your kids have primary immune deficiencies, please don't only consider what helps PANDAS and please get at least a consultation with an expert immunologist. I know that PANDAS is very visible, annoying, and sometimes disabling, but there is a lot more to immune deficiencies than PANDAS. At the very least, if one only does 1 or 2 IVIG, I think it would be critically important to monitor the kids' immune systems closely to make sure that their deficiencies actually heal, and not just their PANDAS symptoms. Honestly, even if the monthly IVIG DID make my kids' PANDAS a little bit bumpier (thankfully we've seen the opposite), I would probably still do it because a little bit more eye twitch or need to line up ones' toys "just so" is nothing compared to what I've seen my family members go through with their cancers, gut issues, etc. I don't know how I'd ever face my kids if something serious happened to them later and I had elected NOT to treat them multiply when they were young, for behavioral reasons. That having been said, my kids' behavior stuff isn't that bad even at its worst, so it wouldn't be that tough of a choice.

In light of KeithandElizabeth's hypothesis that the ones who do worse with multiple IVIGs are the ones with multiple infections, I should add that my kids have been tested for everything repeatedly - Lyme, Mycoplasma, intestinal infections, etc. - and the only thing that's ever come back positive has been Strep, Strep, Strep. They have never had mysterious PANDAS episodes that have not been linked to clear, clinically evident strep infections, and their PANDAS has always been mild. So I think my kids are relatively uncomplicated PANDAS cases from that perspective (so far, knock wood). Also, we have seen 3 immunologists now, including Dr. B, and all 3 believe that my kids have primary immune deficiencies; no-one has suggested that their immune deficiencies might be secondary to infection. I don't know how they know - maybe it's a matter of how low their numbers were or of the profile of the different numbers, or their histories of infections and other immune problems, or perhaps family history. Nevertheless, all of them did want to do a trial off of IVIG after 6-12 months (pending the results of their B-cell tests), to see if it might be a developmental primary immune deficiency that corrects itself, since they are very young (ages 3 and 6 when diagnosed).

Caveat to the above: that's a very simplified history, just to give you an idea of number of episodes. I had other stuff go on along the way: thyroid issues, pregnancies, medication allergies, etc. - that had impacts as well - but the above was the basic pattern in response to infections.

I had really bad motor tics, yes, but no verbal tics. The bad motor tics resolved. I asked my husband if he's ever noticed me to tic (obviously not enough for me to worry about...), and he said that sometimes when I'm listening to someone very intently I blink my eyes "hard in a cute way". My eyes have a tendency to get very irritated (allergies I think), so I notice that I do blink hard sometimes when I'm holding a long gaze and when I'm wearing mascara. Wearing contacts was also murder. Is that a tic? I doubt it, but don't know. In any case, the eye irritation itself bothers me more than any blinking it causes. As for number of episodes, too many to count. I distinctly remember bad stuff coming on in 1st-2nd grade, then felt good in 3rd grade, bad in 4th, good 5th-8th, bad in 9th... once I got into my twenties, the episodes became shorter and happened in clear linkage to acute infection - that's when I was diagnosed to have infection triggered blah blah (before "PANDAS" was an entity). I'd feel depressed/anxious/manic, get sick (sore throat, often fever) within one day after onset of mood stuff, and it would clear up within a couple of days after that. That happened a few times per year until I was somewhere around 30. Not long after that, it became less frequent and more subtle - I'd feel "dragged down" when I got sick, tired, irritable. That still happens sometimes (not every time I get sick), but to be honest, I'm not sure it isn't how normal people feel when they're sick. I had one episode last year in response to a very bad infection and that one had some OCD in it, but that lasted less than a week before I went to the doctor to get a Medrol pack and antibiotics.

I have been wondering about this as well - about Dr. K's theories - and have always wondered how he supposes it to work. I don't know of any other autoimmune disease where the production of autoantibodies stops permanently after one treatment. If the autoimmune process was infection-triggered and not "constitutional" regardless of trigger, I can see how one treatment could put an end to one episode: once you stop the process, and assuming that the trigger is no longer present or can be suppressed, I can imagine that you could get a complete remission. But what I can't understand is how you then avoid winding up with the same process again, the next time a trigger comes around. I have tried to think of other autoimmune diseases for which the body can be "rebooted" to permanently cease creation of autoantibodies even in the presence of continued triggers - and have drawn blanks (though I may be missing something...). I would also like to know what length of follow-up he's talking about when he states that 78% only need 1 IVIG. As someone who's had PANDAS for more than 35 years, I can say that I've gone more than a decade at a time without getting triggered - but as recently as last year, I got triggered (a Medrol pack and course of Augmentin put an end to it). So without a VERY long follow-up, I think it's hard to say that 1 IVIG is all it takes. The one piece of the puzzle that I've thought might explain what Dr. K observes has to do with the blood brain barrier. As one ages, the blood brain barrier becomes less susceptible to the effects of inflammation (less permeable). So, if you can stop the production of damaging autoantibodies for long enough for the BBB to mature, and if you can keep the trigger suppressed for a long time with antibiotics, then perhaps by the time the trigger comes around again unsuppressed, the brain doesn't "see" it because the bad antibodies aren't getting in there, thanks to a matured BBB. I had Cunningham tests done a few months ago for the heck of it, and was quite shocked to see that I had elevated anti-dopamine antibodies, because I had been having no symptoms whatsoever. I can only guess that those antibodies weren't getting into my brain in noticeable quantities, thanks to a mature BBB. The infection that did trigger me last year involved VERY severe inflammation - a sinus infection like I'd never had in my life, I couldn't function at all - so perhaps in that case the inflammation was bad enough to cause even my mature BBB to be more permeable. I also wonder if the "turning back of the pages" has something to do with cycles in the regulation of inflammatory cytokines, and their impacts on the BBB. I also haven't understood why monthly IVIG would be bad. I think that it would be important to look at immune deficient vs. immunocompetent patients here. I can imagine that for patients with normal IgG levels, maybe supplementing again and again and again could get levels way too high, and perhaps this could be damaging. But for patients that are immunodeficient, which seems to be a fair fraction of PANDAS, I don't understand the potential source of harm and it's something I'd really love to understand. My kids both have significant immune deficiencies that require monthly IVIG in order for them not to get extremely ill physically, so we had no reasonable choice but to go that route... we worried about the impact on PANDAS, but I have to say, they've done great on it. We had a PANDAS blip (two bad days, another day or two of moodier-than-usual-for-him-but-within-normal-range) in only one of the two kids last week after they both got strep impetigo, but the PANDAS got back under control quickly with a change of antibiotic. (We'll be doing a high-dose IVIG next week at their regularly scheduled time, rather than a mid-dose, just for extra insurance.) Other than that, they've done very well PANDAS-wise, 100% remission over significant time periods (months).

If it turns out that your son is immunodeficient, as many PANDAS kids are (and it sounds like your son might be based on long battle with strep), we have been having a great experience with Dr. Sean McGhee at UCLA (pediatric immunologist). I have two kids who both have immunodeficiencies and PANDAS, and Dr. McGhee has been great about doing whatever it's taken to keep them well. With immunodeficiencies in particular, there can also be other complications, so I like the fact that we have an expert immunologist watching them carefully, and then knowledgeable referrals to the best docs at UCLA for any other specialized needs. And my kids have had great experiences getting their IVIG at the UCLA pediatric procedures area. They have a "child life" staff member who is educated in how children of different ages respond to medical procedures (emotionally) and who brings them age-appropriate distractions, games, "medical play" equipment, crafts, DVDs, snacks, nice presents they get to keep, etc. - and the whole staff does what it takes to make the kids comfortable. Believe it or not, my kids actually look forward to going.

Now I have read the thread and have a couple of things to add - (1) I never had gross motor issues, so add that to my datum, and (2) re. habits, I would have thought that my OCD and eating disorder stuff would have been pretty baked in after a several year (varying severity) episode, but the truth is that with no "retraining" to speak of, I just lost interest in those habits once I was taking antibiotics and they simply went away over a short period of time.

I am an N=1 and haven't read this whole thread, but just to add my one datum about long-term brain damage... I had PANDAS as a kid BAD, for many years (including 2 years as an inpatient), with anorexia nervosa that caused extreme weight loss and everything -- and despite not getting any treatment whatsoever until I was in my late teens, I don't think I suffered permanent brain damage of any consequence. I had detailed brain images taken in my mid 20's to take a look, and they could find nothing unusual about my brain whatsoever. In IQ testing, I did test significantly worse on spatial stuff than in other areas, which the tester said could indicate mild brain damage in that area, but I was still in the average range for these pieces. I am indeed lousy at navigating, but other than that my brain seems to operate at a high level :-). I also have numerous adult family members who had PANDAS and went untreated throughout childhood, and I haven't seen any evidence of lost long-term ability or "baking in" of behaviors. To the contrary, everyone seemed to improve as adults. Pretty much all of us got degrees from Ivy League or comparable schools and have gone on to have successful, highly intellectually and emotionally demanding careers and good relationships, and no long-term anxiety or anything. So if there is long-term damage, I certainly haven't seen evidence of it. The one caveat: my grandmother, who I'm quite certain also had never-treated PANDAS (anorexia nervosa as a child, anxiety and depression, constant chronic sinus infections, etc.) did get Parkinsons in her 80's.

Crap indeed. It's always so hard when stuff strikes on a Saturday and you can't reach anyone right away. I hope that it's one of those things that just passes...good sign that she ate the soup. Funny about the black widow thing. We had the exact same thing before. Where we live, black widows do get into people's houses all the time, and we get rattlers, too. So those questions aren't altogether unreasonable, but back in the day, it occasionally did keep my kids up at night. Hoping that a good night's sleep takes care of it...

Costochondritis. I've had chest pains from two sources when my big infection-triggered inflammatory episodes have gotten going in the past. One is from mitral valve prolapse (which would show up on an echo), the other was diagnosed as costochondritis. Most common in kids between ages 12 and 14. http://www.emedicinehealth.com/costochondritis/article_em.htm

Another thing to consider since he tests positive for strep antibodies and is chronically sniffling - might he have impetigo (basically a strep rash) in his nose? My ds6 has had exactly the same thing you're describing a few times (including now) - lots of deep sniffing, nose bothering him (rubs it), dark circles -- but no discharge. We tried allergy medicines (all kinds - oral and inhaled), and nothing worked. It came back recently after months of being gone, and our new immunologist took one look up his nose and said that he had impetigo crusts up there, and that impetigo crusts can look like something from allergies, but you know that it's impetigo if the allergy medicines don't work and if they blood-test positive for strep.

I think the news about the school is great, both for you/your child, and also in terms of raising awareness, which will probably end up benefitting other kids down the line. We haven't needed any kind of special treatment at our kids' schools since PANDAS was always mild and not disruptive, but we've also had great reactions from teachers, administration, etc. They've been able to go with the flow and have always been extremely sympathetic, even reporting back to us excitedly when "the light bulb went back on today!" at school (before a few months ago, ds6 had only about 2-3 very discrete episodes per year, where he clearly "checked out" one day and then "checked back in" a couple of weeks later). And everyone has been very interested in learning more about it. Ds6's first grade teacher even asked if I could talk to the parent of another child in her class about it, because after learning about it, she thought he might have it too. I figure that with everyone involved in childcare/schooling that we educate, more cases are likely to be detected and treated - both with medicine and with compassion...and that's a great thing. I do have to wonder, though, if we'd be getting the same positive reaction if my kids had been "externalizing" more than "internalizing". My kids don't have verbal tics, large motor tics, aggressive behavior at school, etc. - at school they just get spaced out, disengaged, and inattentive when they're not feeling well. I'm guessing that kids who act out more, though no more at fault, may not get as sympathetic a reaction.

p.s. Emerson, will your teachers let you work in sort of an "alternative" independent way at all? I had to do stints of that in high school and it worked really well for me.

My kids started last week. They both have great classes with lots of close friends and very cool teachers, and got off to a great start. I am hoping for a great year. Unfortunately, today we are seeing real PANDAS in ds6 for the first time in months. They've both had strep impetigo for a few weeks, and I've been amazed that we have NOT seen PANDAS even with active strep infection - but today I think was the perfect storm for ds6 - strep in his nose, strep in his brother, getting out from his last IVIG, pizza last night (he always does badly after pizza, go figure) and his doctor switched him from zith to penicillin on Thurs since the zith wasn't doing the trick on the impetigo...but the penicillin clearly isn't as good against his PANDAS. I give ds6 a lot of credit, though - he is able to say "I'm having a "sick" day so I'm going to hang low and watch movies...I'll feel better by Monday." I hope it's true!

Sounds to me like she might be having issues due to laxity of the connective tissues and joint hypermobility? Joint hypermobility is well known to occur with a lot of adult anxiety disorders, particularly those that start in childhood, and can cause injuries like these to be more common. At least in the psych department where I worked, everyone "knew" that the joint hypermobile set was also the autoimmune set. I have it myself, and because everything is more "lax" than it should be, weird injuries and muscle aches can happen and at times it can hurt to walk. A quick test - can she touch her thumb to her forearm (don't try this on the currently injured hand, try it on the other)? Is she very flexible? http://www.medicinenet.com/hypermobility_syndrome/article.htm I've had good experience with physical therapists for this condition. One put me on a regimen of weight lifting to keep all of the muscles around the joints really toned, and that helped a ton - essentially completely. I've been lifting now for 20 years at some level (lately not muich), and I find that when I do stop lifting completely for a long time, I'm prone to more weird stuff like that; it's good motivation to stay in shape. When I was pregnant with my second, I had problems because the pregnancy hormones make one even more lax, and sometimes my hips/legs would just buckle under me (rarely, but it happened). I had a physical therapist who specialized in this and worked miracles with deep massage...can't complain, either, that my insurance company then paid for massage twice per week while I was pregnant She was from the Netherlands and said that joint hypermobility is much more recognized and treated there; she thought it was bizarre that people don't seem to recognize it much in the US.

Based on their levels of immune deficiency, Dr. B predicted that my ds6 would need 6 months of IVIG (and our new immuno says 6-12), and that ds4 would need them "indefinitely" - couldn't yet tell. I've put this in other threads, but I'll summarize our experience again. My boys had 1.5 g/kg with Dr. B in April, followed by 0.75 g/kg more or less monthly since. They've now had 5 treatments. Tics and digestive issues, poor appetite, and anything resembling depression resolved basically completely after the very first treatment, and never came back. After the first dose, we had some "turning back of the pages" for a couple of weeks, then it stabilized, then we got some mood detioration after a few weeks -- whining is what it boiled down to. After each of the next two doses (0.75), one of the 2 kids had one noticeably bad-mood day immediately after dosing (different kid each time), then what we considered total remission, then mild to moderate whining (primarily ds6) during the last few days before the next dose. After that, things stabilized completely (no deterioration prior to next dose) except for some whining in ds6 for a couple of days while we did a 10-day trial off of antibiotics, during which time both boys got impetigo (likely strep). Moreover, around this time we noticed resolution of things that we hadn't even considered problematic. Even minor sensory issues disappeared, very minor bedtime anxiety disappeared, minor shyness disappeared. I'm very curious to see if we'll notice additional changes over the next few months. Honestly, ds6's whining, when it was happening, was nothing that I don't see all the time in his peers - probably even not as bad as his peers - so I'm not sure it was anything significant except that for a while there was a pattern to it. Ds4 hasn't even flinched mentally for quite a while now.

We are still following the protocol Dr. B set out, but don't see him any more - 3000 miles away!

Wow, so sorry (and upset) to hear this story. What a crazy thing! I really admire your "we'll try again next time" attitude though!

Yes, it is a blood test, but I don't know if it's a commercially available one or if it's a specialty test they do here. UCLA does do some specialty lab tests that one can't get through commercial labs, but I don't know if this is one of them. I can ask next time I see the immunologist.

Sorry I lost track of this thread and didn't answer the questions. They got one 1.5 g/kg dose, and then 8 weeks later started 0.75 g/kg every 3-4 weeks. That seems to be holding them at 100% continuously at this point, with no negative reactions of any kind during or after the doses and no detioration right before the next dose, either. Two immunologists both wanted me to get IVIG too, for deficiency not for PANDAS, but Aetna denied it. However, I just checked my numbers again myself and they DO meet Aetna's latest published criteria, so I'll be making another appointment. (Aetna has changed its criteria a couple of times.) I'm feeling great anyway now that I'm not constantly fighting the boys' chronic infections with my own lousy immune response, but long-term I would be happy for the boost in immunity.

They can outgrow it, but that doesn't always happen. Our kids had some special memory B cell test done at UCLA that's apparently a pretty good predictor of whether they'll outgrow the need for IVIG or whether they're likely to be on it long-term. Haven't gotten the results yet, but our immunologist said that even though their immune deficiencies look pretty bad (esp ds4), it is possible that they'll outgrow the need for IVIG within as little as a year.

Just a little update with some happy stuff. We're almost 4 months out from their first IVIG, and I can't believe the great stuff we've seen. PANDAS has always been on the mild side, but we always used to have a bunch of the annoying stuff - sensory stuff, mood/shyness stuff, etc. Below are some of the little victories that have made me happy. The big initial victories were 100% removal of tics and 100% removal of OCD symptoms, even in the face of infection. Moodiness is still there just a little bit on rare days - and came back quite a bit temporarily when we tried to go without antibiotics for 10 days - but I would put my kids squarely in the middle of the pack of their peers at this point as long as they stay on antibiotics. I would say that ds4 is even less moody than average among his non-PANDAS friends. 1) We went back-to-school shopping for the kids last week. This was the first time EVER that ds6 has been able to just pick out what he liked and wear it. He always had so much trouble with sock seams, rough denim-type cloth, cuffs, tags, etc. that no matter how much he liked "cool" clothes and shoes, he always wound up in sweats (top and bottom) and sandals. This year, I bought the styles he wanted to wear, and he is wearing all of it with no problem - even the socks and shoes! And a lot of it is rough, rugged denim-type fabrics. 2) No nighttime anxieties in either child at all. They were never a big deal - just liked to go to sleep in our bed to prevent "bad dreams" and then we'd lift them into their own beds when we went to bed - but now they just bed down in their own beds for the night on the first pass. 3) ds4 has made HUGE progress in reading and writing and drawing in such a short period of time, now that he doesn't get mirror-image confusion. He actually seems to enjoy reading words and spends a fair amount of time drawing and coloring for fun, which he never used to do. 4) Social anxiety/shyness gone even with unknown adults (this was the last frontier). If they want something at the counter (e.g. glass of water while we're out), they just look the server in the eye and ask for it. They place their own orders at restaurants. They maintain eye contact and speak when spoken to even with adults they don't know. They'll go on things they want to do (e.g. water slide, bouncy house) no matter how crowded it is or how many "big kids" are in there. 5) Ds4 is totally comprehensible verbally now that he doesn't have so many starts and stops (was kind of a tic thing). This seems to have really increased his social ability/confidence with peers. He tended to hang back from the pack just a tad before - he got frustrated at trying to make himself understood - but now he's eager to be with his friends all the time, speaks liberally, and can't wait for school to start. 6) Greatly improved athletic skills. Ds6 just got up on his bike with no training wheels and no anxiety about it...both made a lot of progress with swimming and jumping off the diving board... and many other things like that. 7) Digestive issues and food sensitivities gone. Daily, normal, pain-free pooping. Joy! I've enjoyed them so much over the summer that I'm really going to miss them when they go back to school next week...and I'm not worried about how they'll be at school, at all... Just thought I'd share a bit of happy news. My husband and I were moaning over insurance hassles and out of pocket costs for the year the other day, and then it occured to us that what we had gained was priceless....

Re. for how long "monthly" kids will need IVIG, the plan for our kids (ages 4 and 6 - were 3 and 6 when IVIG started) is to go for a year and then see how they do off of it. HOWEVER, apparently there is a test they can do now (memory B cells, I think), kind of experimental but our immunologist says that it's a good predictor of prognosis - whether kids will need continued IVIG long term or whether they're likely to become independent of it. He did it on my boys but I don't have the results yet.

Don't have time now to answer all of your questions, but about the red azith, my boys (esp ds6) are sensitive to red dye also, so we do get the azith pills in white. Our pharmacy has been great about it. The azith pills they give out in a bottle are red, but if they just give you a whole bunch of Z-pac's (which are made up of 250 mg pills, my kids' dose), then those pills are white. So they just send us home with a big bag of Z-pacs each time.