momto2pandas

Amox has never helped our ds's strep infections, at least ever since that strain we got a couple of years ago. I've given up on it.

Sorry you are going through it too! I am not sure how I feel about IVIG. The immuno talked about it at the kids' last visit (when he prescribed the tests), even before we got the results. Primary immune deficiency is most of his practice so perhaps he anticipated the results. At the time I didn't think about it too much because somehow I still thought the tests would come out normal, and when I did think about it, it was about how we would pay for it if we chose to go that way given that I assumed their tests would be normal or at least marginal. (I know this doesn't make sense given that we were there in the first place, denial I guess...) We haven't seen the immuno yet since getting the results, but now I'm pretty sure he'll want to pursue it and they do meet criteria for our insurance to pay for it. On the one hand, it seems like it's the holy grail of PANDAS and that I should be glad that we'll get it paid for...and I should be glad that it should help... but it always seemed like a distant "there if we need it" thing for far in the future, especially given that my little guy is only 3 and has only had 2-3 episodes of minor PANDAS symptoms in his whole life. I'm still making the adjustment to thinking of them as moderate (I guess?) immune deficiency rather than minor PANDAS. Now that it's looking like IVIG probably is in the future, I'm thinking about the actual process of going to the hospital, getting the IV put in, having side effects, risks, etc. and how to explain it to the kids when from their points of view they just have stuffy noses, uncomfortable socks, and occasional pissy moods. They don't currently have symptoms that make them feel "different" from others. I also worry about the fact that some kids have worse PANDAS after IVIG, since my kids are not badly off from that perspective right now, so we have a lot to lose. It would be a no-brainer if they were not functioning to begin with and we HAD to try something, but the truth is that they are functioning fine (albeit constantly on and off of antibiotics) and though it would be a dream come true to see them completely free of symptoms without antibiotics, I am also scared of losing what they've got. I have seen ds6 in a bad way in the past (1.5 years ago), and I do NOT want to go back there. They are happy boys with good lives right now, fussy days and stuffy noses notwithstanding. My husband and mother have said the same thing your doctor said: why are you bothered, this is great, this makes it easy? I don't know - maybe I need to make that adjustment but my feelings aren't that simple at the moment.

I don't know what to say except that we are in exactly the same boat as you except that I have two of them (see my post from last night about just having found out that they are both immunodeficient.) Very similar history and everything, except that our PANDAS hasn't been that bad. I haven't known how to feel either. On the one hand, happy to have some answers and happy, in some way, to have results that don't send us all the way back to the drawing board. But on the other hand, left wondering....how did THAT happen? How did my kids get so sick? Why didn't this come out earlier? What's in store for the future? It's tough - wanting answers given that something is obviously wrong, but deep down really wishing that nothing was wrong and that everything would just come up clean and go away. At first I was happy to have something to work with and "proof" that something was actually wrong. But by the time I went to bed I was depressed and just wished that it wasn't the case and that I didn't have to put them through whatever comes next.

That's all great about the early cures...but where does that leave those of us that are already into this vicious cycle of infection causing immune dysfunction causing more infection? I've felt pretty comforted for a while by the fact that my kids' PANDAS is subtle... but now that I see how messed up their immune systems are by these chronic infections that seem to get increasingly intractable, I'm worried about all of the other effects the infections may be having...or may come to have if the boys get exposed to something worse than they have had so far. Ds6 says that breathing is hard at times - thought it was a touch of anxiety or asthma, but could it even be bronchiectasis from these chronic infections? His doctors have never really investigated it. Ds3's speech clarity isn't progressing the way it should be (despite his language >90th percentile) - speech pathologist yesterday says she thinks it's neurological. Is the infection doing this, too, or is the inflammation interfering with his hearing? And what about the heart murmur that comes and goes? Seems likely this is all related. It also does make me worry about more PANDAS in the future. But where to begin? I agree, early strep infections seem to do something profound to the immune system, that's perhaps why they seem to "kindle" the development of other infections. The infection is the root cause, and early on at least the infection is frequently strep. Then, the triggers tend to blur into one another. So the best time to try to cure PANDAS is very early on. This is where we most often see the "one pill wonder cures" where one dose of zithromax totally cures a tic disorder. Once persistent infection after persistent infection begin piling on, cure is still very possible, but sometimes harder to achieve. The theme of co-infection is usually very important in the older (>10 y.o.) child with the PANDAS-like picture. It will be most important then, in any education campaign, to let parents and docs know about the early signs of strep infection (the compulsive urination, etc), just as is done in autism. Dr. T

My younger ds did have the pink eyes associated with that infection, too. Can't remember about my older ds, but definitely the younger. We were given an antibacterial ointment for his eyes. We never had an echo, but he did have a heart murmur in all of this. His pediatrician didn't hear it last time he examined him this past fall, though. It seemed to have gone away. Is Kawasaki's chronic in any way or is it something that would have been of the past but left a residual immune problem/infection? I am just wondering if it would be a current diagnosis or just a guess at what may have happened.

That is interesting. I do remember my husband and I discussing my ds3's (at the time ds1's) extremely red (yes I would say strawberry) mouth back then, but I figured that if it was Kawasaki's it would have stayed that way. Thanks for the info and I will have to follow it up. It is always disheartening to go from one rare, hard-to-get-treated diagnosis to add on additional ones... but we have to keep going until we have done everything we can do for our children.

Yes, it goes away. Sometimes within days, sometimes over the course of longer (like months). I think it took me a couple of weeks to feel much better, and within a couple of months totally better. Problem was that after going off of the antibiotics I started getting recurrent infections and associated symptoms again, but those responded to other antibiotics and I never had lupus reactions to anything else I took. Since so many of us have kids on long-term abx . . . can you clarify something? Is "drug-induced lupus" reversible then? You stop consuming the drug, and the lupus recedes or cures or whatever? A little scary that there is another potentially serious side-effect to long-term use, other than that ubiquitous "super-bug" everyone's always warning you about!

I haven't yet spoken to the immuno about the lymphocytes but we are well aware from the sinuses full of green stuff that there is an ongoing infection, so the lymphocytes will not be a surprise. I assume it is that but perhaps the immuno will have more ideas about other contributors. I guess that we are lucky in our case that we don't have some kind of mysterious hidden infection but rather one that's in plain sight begging for treatment. My sons get WAY better on zith (like 100% within 4 days or so) but get worse again, without fail, within 2-3 days of going off. I am hoping from this (and from the fact that the doctors always say "green" when they look in their noses) that we are dealing with a zith-responsive bacterial infection, but just not getting all the way there in eradicating it - hence the continued high lymphocytes. My deep-down fear is that it's actually a viral infection that we won't know what to do with, and that the zith is just helping the symptoms because of its antiinflammatory effects... so we're not even attacking the root of the problem. Guess I'll know more once they tell me the titers.

First minocycline, then doxycyline. However, those two antibiotics kick off drug-induced lupus rarely. Before me, there had only been about 6 case reports of this in the literature (and all of them "looked like me"). Now I guess it's a known thing to watch out for. (Why am I always on the front of the wave having to figure things out from scratch??) I don't have top of mind a list of drugs that are most likely to kick off drug-induced lupus but I do know that it can get kicked off by prolonged use or dose increases of antibiotics & other drugs. Given that your dd appeared with a butterfly rash and increased fatigue when zith was increased, that makes me suspicious. Drug-induced lupus doesn't always look exactly like other cases of lupus and the expected results of blood tests can be different so you may not want to get stuck on the ANA results.

Your last part here is where I'm trying to figure out chicken and egg, though. My kids, I now know, have immunodeficiencies, and they can't seem to kick these infections permanently no matter how many courses of different antibiotics we try. So how do we get at the "root cause"? Just higher, longer courses of the right drugs, or do we have to "fix" the immune system with e.g IVIG first before we can expect any of those drugs to provide a lasting fix? I.e., is the immunodeficiency the "root cause" and the infections actually a symptom of that (and subsequently the root cause of PANDAS)? Or is the infection the root cause and the immunodeficiency something that wouldn't really matter much had we not gotten stuck with that particular infection? Hopefully their immuno can sort it out.

Both kids have ongoing problems with cracked/fissured lips and have had occasional mouth ulcers, in addition to the skin lesions around the mouth (looked like pimples). I have not noticed any of the other things. One of them has very red checks and lips, the other doesn't. I wondered about Kawasaki's in the past but they didn't seem to have quite enough symptoms. No strawberry tongue. Now that we have the immuno results, though, I will ask the doc about it. Titers were taken but she didn't read those to me - still have to hear back on that.

Please keep in mind the idea of drug-induced or other kinds of lupus. I had drug-induced lupus, and it looked very much like my usual "PANDAS" type episodes except for the rash, joint pains, weakness, and an unusual amount of fatigue (actually really profound fatigue) and brain-fog/cognitive issues. Quite a number of antibiotics can be responsible for setting off drug-induced lupus, as was the case for me. My ANA was never positive, but I did have other positive autoantibodies (e.g. anti-cardiolipin antibodies - I can't recall the rest). The whole business was really a pain to sort out and took a few months. I had a rheumatologist, a psychiatrist, and a very involved GP and a gazillion tests. Thank God I had better insurance back then! But eventually they did sort out that the antibiotics had come to cause the problem rather than solve it. The psychiatrist was actually Brian Fallon, who we've been discussing in another thread. He was not the main one who sorted things out but it was very helpful that he kept maintaining that we had to get to the bottom of the autoimmune thing and that he did not believe that it was psychological (speaking to the paranoia part you were talking about.)

I don't know much about GI infections. Could this be related to severe constipation? Ds6 has it bad, and worse when PANDAS seems worse. When he finally does poop, it's like a baseball bat - literally 2 inches in diameter and well over a foot long (sorry TMI!). They stop up the potty every time. He was actually hospitalized once or twice with high fevers etc. related to some sort of toxic colon or something. Can't recall the details. It was never followed with testing or any kind of antimicrobial treatment.

Dr. T - I highly recommend talking to Brian Fallon if you're going down this route. He was my doctor for a while, and was sure that I must have Lyme - but my tests never came out totally positive. He did fully recognize what I had was an autoimmune disease, though. I asked him a thousand times if he thought I was "somatasizing" and he responded 1000 times that I did not "look like" a somatasizer but rather looked like an infection-triggered autoimmune case. But then I moved west and that's when Dr. Ketter took over with confirming the whole thing. PANDAS was not coined at the time but I am sure that Dr. Fallon would be onto it by now.

You guys are in the East Bay? I thought you were in the Peninsula. We lived part of the time in SF proper and part in Lafayette. We were diagnosed with Strep in Lafayette - it was a bad one that the antibiotics didn't seem to get easily. In response to that strain my ds actually had strep lesions all over his face, etc. That's when we started to think that my ds6 was allergic to something in the medicines (dyes in tylenol or whatnot) - his behavior went wacky every time he relapsed. Eventually, ped figured out PANDAS. And I have been sick (sore throat, chills, etc.) every 4-6 weeks since! Oddly, my ds6's best friends (you know, the types who are always here or my kids over there for the last couple of years) are both now having chronic/repeated infections and showing signs of PANDAS. I hope they didn't catch it from us.

So your son got IVIG for PANDAS but the others with the same test results did not get IVIG because they don't have PANDAS (or is it just because they are younger)? Am I understanding that correctly? Did you get insurance coverage for IVIG for your older son based on his immune results? I can't imagine keeping my kids out of social settings at this point - they are very social and that's all they ever want to do! That must be hard, though at least in your case there are a bunch of siblings. It is interesting that the whole cluster has the same results. Don't know if you were aware, but we were also living in the Bay Area in 2006 and part of 2007, and it was there that we first started to have problems with Strep.

They were both vaccinated by their pediatrician before they were diagnosed with PANDAS. I know that sometimes people are re-vaccinated to "jump start" the immune system, but I don't think the immuno will suggest this. He did it to me since my levels also "failed" after one round of vaccination, but my psychiatric reaction to the vaccine was so bad that it had to be stopped with steroids. After that, he said that my kids should never be vaccinated again. I don't know the rest of the results yet - she didn't read me everything. I'll probably call back to get the rest. We haven't had the Cunningham test. There has never been any question about the validity of the PANDAS diagnosis and we pay cash for all of the other tests to begin with (many thousands as you can guess), so so far we've spared ourselves the expense of the Cunningham test. I would be curious, though. I'll PM you. Thank you. Does your dd do monthly IVIG?

not at all trying to derail the thread or get into vaccine arguments - just trying to understand. . . this presupposes that the prevnar vaccine was accurate and effective at the time given, yes? so, it puts the onus on the body to have not reacted properly to the vaccine, correct? correct.

All of those were normal. Apparently usually kids are deficient in IgG 2 & 4, but mine are deficient in 3.

Hoping some of you with more experience in the immune deficiency arena can help me here. Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview. As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point. So, they both have exactly the same pattern: Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG) Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10. Lymphocytes apparently crazy out of range M. pneumoniae normal She didn't read me the Strep tests of any of the others...I may need to call back on that. I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

Doesn't some of this have to do with comorbid immune deficiencies? I always assumed that it did. If a kid presents with a real immune deficiency, the treatment for that - PANDAS aside - is generally monthly IVIG. My understanding is that a decent subset of PANDAS kids have immune deficiencies and in these cases, the prescription for monthly IVIG is based at least as much on that as it is on any PANDAS symptoms that may or may not be active. My immunology tests showed up with specific antibody deficiencies even post (distant) vaccination, and my immunologist's office told me that given my track record of chronic/repeated infections, if I did not respond well to repeated vaccination, I was going to be prescribed monthly IVIG regardless of any presence/latency of PANDAS symptoms.

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx DS started thyroid meds a couple of days ago Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly is clarithroymycine ok is prednisone ok p.s. Thanks for your kind words!

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx DS started thyroid meds a couple of days ago Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly is clarithroymycine ok is prednisone ok I can only speak for myself. I can't remember having had clarithromycine, but I have had Medrol packs (steroid) and have had great results from those, though day 2 was always pretty darn moody. I did not mean to suggest that everyone would be allergic to minocycline since I know that allergies can be very individual - but I wanted to raise it since this caught my eye since I also got much worse when switched to minocycline.

Just one little comment: I was switched to minocycline some time when I was a young lady (can't remember from what I was switched), and things got very bad. It took a few months to figure out that it wasn't that the mino was failing to work, it was that I was reacting to it (lupus reaction). Later on, I also reacted to doxycycline (given for malaria prophylaxis while traveling.) Now, I can't take any cyclines and doctors won't prescribe them to my kids, either, based on my reactions. Is he having any signs of an allergic reaction? I had a rash that came briefly and then disappeared, as well as mouth sores, and bad joint pain... in addition to the brain stuff.

Good point. We are definitely outdoorsy people who are out and about (and for me, exercising) in the nice weather and holed up indoors in the poor weather, so it could be related to our behavior rather than the weather per se. Nevertheless, the lights, I have found, do improve mood.