momto2pandas

We see a mood change with overcast days. I don't know if it's the pressure, though, because when I was a kid and more symptomatic I used light therapy successfully when we had overcast periods (not unusual on the east coast.)

Could the symptoms with your entire family be environmental?? You hear stories about 'sick homes' with molds or bad dry wall, gases, etc. Because all of you all so sick, I would look deeper. Just a thought. Yes, we've been looking, thanks for the idea. It's really just me and the kids - my husband is fine. And it seems to be bacterial because the green gunk in our sinuses is visible and stubborn. It kicks off some PANDAS symptoms, but except for the bad episode I had in the fall, it's been symptom levels that are a drag rather than a crisis. Apparently it has been an exceptionally bad year for allergies in our area so our docs think it could be that we are very allergic and inflamed, and that leads to proliferation of infections in the sinuses. However, the allergy remedies we've tried (Zyrtec, nasal steriods) don't seem to help (at least not yet). Antibiotics kick it eventually each time, but then eventually it comes back. We are exploring all avenues but it's looking like we have a bug that we're passing back and forth and never really getting rid of either due to poor immunity or nasty strain. That's how we've come to the point of getting immune work-ups.

Thanks for bumping this up - it's timely for us. What your daughter is experiencing is exactly what we are experiencing in our family. Our (especially my) "sick" symtpoms go away only as long as the antibiotics are "on"; once they are "off", it's just a matter of days to weeks before the green mucus, sore throat, fever, etc. comes back. I've been on as much as 2 months straight of high-dose Augmentin, but within a month, "it" comes back anyway. I think each of me and my two ds are now on something like our 6th course of antibiotics in the last 4 months just based on physical symptoms. The boys mostly get sinus symptoms but I also get fevers, chills, night sweats, bad sore throats, etc. I had the Pneumovax vaccine in Dec (which incidentally made me crazier and more depressed than I've been since childhood, for a couple of weeks) to see if I could develop proper immunity to S. pneumoniae, etc. I responded well to some of the serotypes, but launched no response whatsoever to others. The immunologist said that it was an "overall" decent response but now I wonder if we need to hone down which strains I didn't launch any response to and figure out if that's what I have.

Agreed! This is not mean to be "scientific" information, but I still think it's useful to collect everyone's experiences, especially their descriptions of what "improved" looks like.

This is such great information - thanks. I can relate, from my own childhood. By the time I was 8 I was praying nightly that my life would end and my suffering with it, but I'm virtually certain that I hid it very well (for the most part - couldn't hide the weird zombie stuff that happened when I actually got sick) until the anorexia came and blew my cover. I think that these kids are bright and perceptive enough to know that, among other things, we want them to be happy and well and stake a lot of emotional energy on the hope that they will be. And perhaps they don't want to disappoint (Alice Miller: The Drama of the Gifted Child.) So far my ds's are little and pretty open about their emotions but those days may well be numbered and that's rather scary.

Vision? Can you expand on that? It's funny I was just wondering about that. Right when he was diagnosed with PANDAS (bad, classic episode), ds6 (then 4) was vision tested as part of his exam and was found to need glasses, and of course we went to the trouble of getting them. But later on, once the PANDAS was under control, he was screened at school and found to be 20/20 without glasses. Similarly, I was just noticing this week that my ds3's ability to read small print seems to get worse when he is exposed to infections. I had just made note of it and dismissed it. My own vision got REALLY bad REALLY fast during my terrible teen-age episode. I got from 20/40 to 20/650 (eventually got LASIK). I always attributed it to malnutrion (anorexia) but maybe it was an inflammatory process?

Exactly what ds6 is like during a "very bad" exacerbation for him (these days). "Dear Insurance Company: My six year old son gets PMS any time he gets green boogers...."

Man, we see this too! "Dear Insurance Company: Please approve many thousands of dollars of tests and meds. When I have a sinus infection, my 3 year old won't eat his sandwich and mixes up b and d. I'm sure you understand."

This is so fascinating. We all see our immunologist today, and perhaps I will inquire about steroid bursts - I have had 2 before (very successfully) when suffering infections that got out of control, but the kids have never tried them - we haven't really had justification. What you describe about your dd is exactly what I see in ds3. He can sound out long words, but his ability to read "he" (and not say "heh") has been coming and going for at least a year - despite the fact that he easily learns things harder than that. Numbers, in addition to letters, are frequently written backwards. He can add and subtract with perfect accuracy up to 10, but can't even recognize numbers in the teens. I am no early childhood development person so maybe this is all normal but it seems strange to me. He also gets very frustrated trying to put things to paper. He has written so well at times that we know he is capable but sometimes it seems that he is incapable and he'll get frustrated to tears and will just refuse to try for a long period thereafter (we don't push, but it's very sad to see). Incidentally, we just got test results back for our ds6, who has always tested at the 99+ percentile for everything. I was concerned this fall/winter, as we struggled with all of these infections, that he did not seem to be functioning at his usual level, but his teacher and his tutor (he gets "pull out" gifted treatment at school) denied any problems and kept saying that he was doing great. However, his proxy-IQ tests from December (in the thick of it) came back this time at 93/94 percentile - and they've never before been below 99+ percentile, confirming my impression. It's still a great result but the difference and the trajectory scares me and I'd hate to see his special treatment at school go away. Once again, though - try to argue for steroids, etc. based on the fact that your kids are functioning "only" 2-4 years ahead of grade level. I'm embarassed to even approach it but it makes me sad to see the decline and particularly the frustration that accompanies it.

Thanks so much for this info - this is exactly the kind of thing I have been wondering about. Both of my kids, although far from meeting any DSM criteria these days, have "personality" things that I wonder about constantly - ds6 is wound a little tight, judgmental, sensitive; ds3 has difficulty with some reading/writing stuff that he learns and loses, and doesn't listen well. For example, ds3 will write pretty well (for age 3) for a while, and then suddenly do mirror images or put letters out of order. He will read ok (simple words) for a while, and then completely forget the difference between"b" and "d" or fail to recognize his name. Granted he is 3 but my spidey sense tells me that something is going on. For both of them, all of this stuff varies in degree over time and my dh and I are are constantly analyzing "good days" and "bad days." Whether these traits are just "who they are" vs. part of a disease process has strong implications for how aggressively we want approach treatment. Then there is the issue of GETTING treatment. What doctor will prescribe based on a 3 year old who sometimes writes his letters backwards or a 6 year old who can be too bossy, when by all accounts they are functioning well? These things worry me constantly but I do have to say that, compared to how things could be and have been in the past, I'm very blessed to have kids who are doing as well as they are at least for now. Fascinating stuff as it begs the question of where personality actually comes from. How much of neurotic-type personalities, gifts and difficulties in learning, etc. has actually to do with responses to immune challenges and immunologic history?

Yes, he had completely stopped moving, after having been very active, for the 3-4 days while I searched for a new OB. I even tried camping out at the hospital but the on-call OB refused to deal with me because he was on his way out for his first vacation in 10 years, blah blah. It was the worst, sinking feeling in the world to think that my baby was dying/dead inside me after having made it all the way through a healthy pregnancy, and I couldn't find anyone to help. Not too dissimilar from what we go through as parents of PANDAS kids, now that I think about it....

Can you expand upon the ways that he is better that you never knew were related to PANDAS? I have seen a bunch of people talk about that and always wonder to what exactly they are referring. I wonder if there are traits in myself and my kids that are related to PANDAS but that I don't recognize as such... I'm guessing there is a lot of that in my 3 year old that for now is "toddler stuff" but that I will come to recognize is more than that.

Just the opposite over here! My ds6 was 43 weeks! I never went into labor, the amniotic fluid dried up, and he was all but dead in there (2 points out of 10) - emergency C section at the end and they weren't sure that he would make it through that. I was supposed to be induced at 42 weeks, but my OB lost her license the night before for showing up drunk to do a C-section, so then I had to start looking for a new OB and no-one wanted to take me (liability reasons) given that I was already post-dates! Finally found one guy to do it and he basically rushed me from his office to the hospital. My ds3 was taken by C-section at 37 weeks due to size - he was already over 8 pounds and had "busted open" my hips (the way that usually happens during delivery). My OB said that if we didn't get him out then, I'd be on a walker for 6 months after delivery. But he didn't need anything special as far as pre-term treatment goes.

Oops - this was supposed to be a poll! What happened? I'll try again.

I would love to see some actual "data" on IVIG outcomes in our group. Please post with your stories, as well! Thanks!

Ha! I'm 43 and I still don't put on deodorant! But then, my Mom scared me off of it with tales of aluminum or something like that, and I don't really tend to sweat or stink...so I can't say that it's purely laziness. There is a kid in my son's class with sensory processing disoder who has this kind of issue. Today, he smelled incredibly strongly of poop. Don't know if it was a failure to clean properly or an accident, or even if he just stepped in something, but the whole room could smell it and he seemed not to notice or care at all. I know that happens with preschoolers all the time but this kid is 7 years old. Of all of the quirks that I've related to PANDAS over the years, failure to wear deodorant has never crossed my mind as one!

I was actually born with tonsils, but over time doctors started talking about how small and then how tiny they were, and the last time I had an exam the doctor asked, "So when did you get your tonsils removed?" I hadn't!

My tonsils are missing but I never had them removed! (Stolen in the night?) Apparently that can be a sign of immune deficiency. Yes, to recurrent sore throats, though. With fevers.

Yes, he said in his TV interview that he still gets symptoms but treats himself with antibiotics.

I would be curious about represenation of non-white groups in other "unknown" diseases for which a lot of hunting on the internet, use of a lot of medical care to get answers, etc. is typical. It's possible that the distribution seen now is mostly a function of the early stage of disease recognition and of the quality of medical care received. Didn't that happen with anorexia nervosa - at first it was thought to be just a disease of the white and wealthy, and eventually it "expanded" into other groups? So much so that back in 1980, I was at first NOT given the diagnosis despite clear OCD-like weight loss of 40% of my body weight, because my family was not wealthy and we are Italian/Middle-Eastern rather than Anglo-Saxon - the pediatrician specifically said that my family didn't fit the socioeconomic and ethnic profile so it couldn't be anorexia nervosa. I remember even at the time thinking that that was remarkable. In a similar vein, one can't help but note that the level of sophistication of people on the forums seems to be beyond the average. Could be that PANDAS is associated with e.g high IQ or highly educated families, or could be that high IQ/education families are the most of ones that have managed to navigate their ways to a PANDAS diagnosis!

I posted a question on this before asking if most people were of Mediterranean ancestry, and most were not, but many people got on to report about the ethnic mix of their kids. You could go back to that post to get a whole bunch of "data". I believe that the most common were central/northern European, with a dash of Mediterranean/middle-eastern (Italian, Jewish, Armenian).

I haven't seen anything published on this, but both I and other (adult) members of my family have had documented exacerbations associated with increases in EBV titers.

Funny, I was just reading about curcumin yesterday and thinking that I should add it in due to its effects on inflammation and viral/fungal illness.

Yes, we suspected PANDAS when ds3 was 2, but it wasn't until he was 3.5 that it was clear enough to be diagnosed - so he had not yet actually been diagnosed when he had H1N1. At 3.5 he still responds to a much more limited set of stuff (only to clear bacterial infections that make him "actually" sick) than does my ds6. When he does respond, though, ds3 has much more clear OCD-like symptomatology, whereas ds6 is more likely just to be in a pissy mood. Yup, it seems like H1N1 made our older kid sicker (and she was sick longer) than our younger...so that may be part of the issue. Also, if your 2 year-old is PANDAS, it may be early enough in his illness where he's not reacting to non-strep illnesses...YET. Or...since 2 year olds are tricky to read (they can normally be a bit erratic) it might be difficult to deterimine what is PANDAS and what is the "terrible twos".

Mine ds 6 reacted, my ds3 did not...but then, he was only 2 at the time so I might not have picked it up.