momto2pandas

I had the same experience with acne, though it wasn't what I would call horrible. You could basically get a good guage on my state of mind by looking at my skin. I have always figured that it was a combination of poor immune function (hence bacterial overgrowth), and excessive inflammatory function (cytokines) - because I wouldn't get just little whiteheads all over, I would get big "inflammatory nodules" (cystic acne). So the same excessive inflammatory cytokine reaction that was leading to breached BBB and associated symptoms was also leading to excessive inflammation in response to acne bacteria. Like Bronx, when I went on antibiotics, everything got better. To this day, sometimes I see people with skin like I had and a certain look on their faces, and I think "PANDAS".

Thank you, everyone, for your kind comments. Re. question about how it went away, I don't know for sure since the idea that it could have been infection-triggered was totally foreign in the early 80's, but the recovery happened over a very short period of time during my (antibiotic) treatment for tuberculosis, so I assume it had to do with that. Yes, 4 years into that terrible episode, 2 years of which were spent in hospitals, someone finally figured out that I had TB, and I spent 2 years on antibiotics after that. That's not to say that I never had any issues after that, but nothing like that severe again. I had some stuff in my early 20's, but life went on during that stuff - and then by mid-late 20's episodes got milder and briefer until they eventually became pretty negligible. I was also diagnosed in my 20's (not with PANDAS per se, not named yet, but with "infection-triggered psychiatric disorder"), so I think that helped. Cory, did your parents have rheumatic fever? That seems to have been a more common strep issue in that generation. My Dad, uncle, and aunt all had it. My father-in-law had it, too. It has been suggested to me before that I consider publishing something based on my diaries, just because it's kind of an unusual thing for anyone to keep 37 years of pretty detailed first-hand accounts of their lives starting so early, and now that PANDAS is known, it's even more interesting. But the truth is that most of the reading is dreadfully boring. It's tiresome enough to read about the crushes on boys that came and went, the jockeying for social position, etc., before I got sick, but it becomes an awful read once you get to the OCD parts - just redundant pain, gazillions of obsessive machinations, more pain, more machinations, more promises to myself to try harder tomorrow, etc. (That was heartbraking - how damn HARD I was trying to get better and to find answers, how diligently I tried working with therapists even though their theories struck no chords, how I read the Bible from cover to cover hoping to find answers, how I kept trying every day to muster more will-power, how, in that era of "tough-love" for teens, I was charged with 100% personal responsibility for my actions...when the answer, creepily, was right there on page whatever with the illness that precipitated the whole thing.) One thing I have to say is that the disease didn't seem to interfere with my writing, at least during this volume (in later years I think it did). The writing itself is surprisingly good; it's the content that's so tiresome. There are parts that are really interesting to me (but probably not others) - like the dreams. For example, right before I got sick I described a dream that I would only do 2 years of high school, and that in order to graduate, I would have to hunt down a particular bug and kill it...and then I could move on with my life. And in my dream, I hunted a long time through labyrinthine hallways to find that bug (it was like a flea), and then I did get it and kill it and was allowed to graduate and go to college. And oddly, that's kind of what happened - I did only do 2 years of high school (in hospital for the other 2), and I did graduate, but in order to move on with my life after that, the "bug" that had been infecting my body had to be "found" and "killed". How creepy is it to have had that dream right before I got sick... In any case, I don't know if I could ever share any of it. I mentioned to my husband that I had found it and was having a hard time after reading a bit, and he mentioned lightly that it would be really interesting reading for him. I practically froze in my boots. It was a very long time ago, it is all very long past, but that was still me, those dark innards exposed in there were mine, that was my ######, my demons. I can barely look at it myself. I wasn't looking for that thing this morning, just found it by accident, but now I feel kind of stuck trying to figure out whether it's healthy for me to read the whole thing and maybe even before/after volumes, or not. I think that ultimately, it would be healthy for me to go back there and come to terms with it, to read and understand the whole story and to accept the tragedy of the understanding being only retrospective, but I need to be better prepared for it than I was, standing there in my closet looking for gift-wrap.

Again I'm no expert, but it seems to me that you have a strong case with the chorea... It's hard to know with insurance, though. My kids get IVIG covered because of immune deficiency, but our doctor has told us that even with that, the insurance requires them to go off after a year and wait to see if they get "bad" again (recurrent infections over several months) to justify going back on it. And we have CVID, so not just a minor deficiency - so this seems crazy to me, that we'll have to wait until they've gotten multiple infections before we'll get it covered again. I'm trying not to worry about that until we get there, but my gut feeling is that, like you, we'll want to jump in at the FIRST infection and just pay for it ourselves if need be, rather than take the risk of waiting until they've gone downhill... I'm not sure how you get out of that expensive cycle, though... I hope that you succeed!! Great to have attorneys in the family in such a case!

Hang in there, Peg - I've been so amazed and what you guys have accomplished. To me, you seem to have the patience of a saint and I always greatly admire the perspective in your posts. I'm glad that you come here for support. I'm sorry if I'm off here, but is the deal that she was doing so great on rifampicin, but then had to go off for fear of its side effects? This is interesting to me because I had very aggressive PANDAS at Allie's age, as you know, until I was treated for TB and got two years of isoniazid and some period of something else that I couldn't remember the name of, but that Dr. T told me must have been rifampicin because isoniazid is apparently never prescribed for TB without rifampin. It was during that period of treatment that I finally managed to recover. I haven't heard much about other cases of use for PANDAS. I wonder if Allie might benefit from isoniazid, which like rifampin, works against mycobacteria? Do you know what infection you're fighting? I assume that she's been tested for TB - I didn't even know I had it until a routine prick test and then the follow-up that ensued. Interestingly, isoniazid also has been found to have antidepressant activity...but I don't know if that has to do with its antibacterial activity or something else. I'm no expert on these drugs...just a thought.

I don't know the answer to your question, but I'm guessing that one problem is that the insurance would likely only cover their negotiated rate... and you may not get the BC/BS negotiated rate up front if you pay with a credit card. Hopefully that's something you could negotiate with the doctor under the circumstances - to give you the negotiated rate up front. In our experience, the "rack rate" for IVIG for my kids has been as high as $7600, and the negotiated rate has been as low as $2300. If you are going out of pocket, I would recommend trying a Coram Health center, as they were great for us and have a much lower rack rate. Do you think you could successfully sue? Unfortunately in the absence of immune deficiency, I think IVIG is still "experimental" for PANDAS, technically, and they could argue that he already had it twice, so evidently it wasn't successful (I'm not arguing that - I'm just always suspicious of insurance companies and how they argue). But it sounds like he's had chorea - shouldn't it be covered for that? I thought that most insurance companies covered IVIG for SC?

My boys (4 and 7) get IVIG monthly, so we've had to figure out how to make it as easy as possible. We do it at UCLA, where they do tons of these on kids, so they've given us good advice. First, they don't do 1.5 g/kg in one day in children my kids' ages there, even though it's in a hospital setting. My kids have done up to 1 g/kg in one day there and have tolerated it great, but their immunologist has said that if he ever went up to 1.5, it would have to be over 2 days. My 4 year old actually handles the whole thing extremely well, doesn't even mind the initial needle stick. He actually looks forward to going because we make a big event out of it. The staff tells me it's not unusual at his age since he doesn't anticipate pain much, just waits to see how much it's going to hurt, and by the time he's assessed the pain, it's over. But he does anticipate all of the treats that go along with the whole thing. However, my 7-year-old is at what they say is just about the worst age - old enough to anticipate it and get tense about it, but young enough that he has little interest in "being tough" for it. So this is what they recommend, and what we do, which helps a lot: First, we do hydrate a LOT the morning of. They get to pick out great big bottles of whatever they want (as long as no dyes) from the convenience store (chocolate milk, big exotic juices or fruit waters, whatever), and then they have to drink it. This part is fun for them because the store has a million drinks to choose from, and my kids don't get to pick "anything they want" like that often, so it's a treat. While we're there, I also let them each pick out a treat that they get to open after the IV is in - again, I let them have things they don't normally get for this, and they look forward to making these choices. Then once we're on the way: 1) We use Emla cream (the generic, actually), which I put on half an hour before we get there and cover with saran wrap, which numbs the skin of the area. It's a prescription you can get from any doctor; we got it from the pediatrician. 2) On top of that, the nurse uses lidocaine spray on the area before they do the needle stick. Ds7 calls it the "freezy spray". You can get a version of it over the counter, so in the past I've kept it in my purse just in case they haven't had it at the center. Between those 2 applications, generally they can barely feel the needle stick. 3) Then, to help distract ds7 from anticipation while they prep the site etc., the "child life" specialist in the procedure area (whose job it is to help distract and entertain all the kids in there) always brings some sort of a visual puzzle book, like "Where's Waldo?" for him to focus on. Or once she brought one of those 3-D viewers where you look into the plastic device and get "slides" that you can click along (can't remember what they're called - Master something?). I thought that was brilliant, because he was really into it, and it completely prevented him from looking at what the nurses were doing. These moves really do occupy him, which helps a lot. 4) As someone else said, I always bring my own ibuprofen and benadryl. My kids happily swallow pills or chew chewables, and they hate the liquids, and the center always has the liquids, so I figure I can spare them that one piece that they don't like. 5) My kids like to play with legos or do crafts during the early stages - the child life specialist always has some special (simple) "kit" prepared for each of them that she knows they will like - but part way through they get sleepy, and then we put on a movie. I always order a couple of new things through Netflix each month so that they have new and entertaining "surprise movies" to get excited about. So that's another treat. 6) We plan ahead to do something "fun" for lunch during the procedure, like they get McDonalds Happy Meals or Lunchables or something like that. Again, they get to pick. Again, not something we normally do, so yet another treat. 7) Then they get to pick a prize afterwards from the UCLA prize closet. What will be in there is always a mystery, so they look forward to that. Whoever got "stuck" first, gets to pick his prize first - so that expedites the whole "who goes first" issue for us. 8) I push fluids throughout, and afterwards, and give ibuprofen again in the evening even if they seem to be feeling fine. In the morning I make a judgment call about whether to give it again, but only decide to do so about 1/4 or less of the time. We do have the Iggie V kit from Baxter, and my kids love it. UCLA also gave us a bunch of real medical supplies (tubing, tape, etc) and fake needles (rubber) so that the kids can play-act the whole business whenever they want. They love to do procedures on Mom and Dad, show their friends how it works, do it on each other, etc. Not as much anymore now that it's more routine, but after the first IVIG, they spent a LOT of time playing with the stuff and "doing procedures" on their animals and on me, and on each other. It seemed to be an important way for them to get comfortable and defuse.

Mentioned it because I have (or at least had) hypermobility, and my hips popped too. My left shoulder still does it. Pregnancy was tricky with those extra flexibility hormones on top of my usual loose joints...sometimes my hips would just go out of joint and buckle under me all of a sudden, particulary on the stairs. I walked around with a cane for a little while in there with my second! It's also the reason I had to have a C-section with my second, which was when it was its worst. The OB said that my ligaments and whatnot were so loose - and my baby so large (that one takes after my husbands' side) that if I gave birth to him full-term, it would take 6 months for my hips to knit back together and I'd need to use a walker in the mean time...so they took him out 3 weeks early, already well over 8 pounds (and I'm small). Ds7 and I both got droopy eyelids (just one) during exacerbations. Neither of us has stretchy skin, though. I was helped a lot by a good physical therapist. He gave me exercises (weights) to do to stabilize my joints and as long as I kept up with those, they really worked. I was unable to run for a while, but once my joints got stabilized with the weight lifting I was told it would be a good thing to run... and I still run and lift now. You're probably tired of tracking down and seeing doctors, but if you have any "ins" to a really good PT, I would highly recommend it.

My boys had impetigo last month, while they were on azith. I asked their immunologist about switching to Augmentin, but he said that he would not expect Augmentin to be very effective against impetigo. He switched both boys to penicillin, which I was very skeptical about because it doesn't have the same antiinflammatory effects as azith or Augmentin, but I'll be damned if it didn't clear up the impetigo. We also used the Muciporicin ointment. The immunologist also upped their IVIG that round to 1 g/kg instead of 0.75, for extra support. Whatever it was, both boys got rid of the impetigo and back to 100% very quickly. Ds7 had started to get some PANDAS symptoms while he had the impetigo, but we only had one really bad day before the penicillin kicked in. Ds4 never did really get his OCD-PANDAS thing with the impetigo, but he was very fatigued. They had also both been having digestive problems along with the impetigo - one constant diarrhea, the other constipation. The switch to penicillin cleared them both of that, making me wonder if azith had started to wreak havoc on their guts. Either that or the autoimmune reaction to the strep or staph was affecting their guts via effects on their neurotransmitters - probably the most likely explanation. Interestingly, their immunologist spotted ds7's impetigo right away even though it was inside his nose. Ds7 had had "crusty nostrils" a bunch in the past - the pediatrician, and my GP, and Dr. B all mentioned it during exams at the beginning of the year -- but none of them said that it was impetigo. I guess it helped that ds4 had it on his face and legs when ds7 had it in his nose this time. The immunologist also probably sees it a lot more often. Also, they both were having lots of nosebleeds, which I guess was related to the intra-nostril impetigo.

Emerson - I didn't read this whole thread, but I think you probably have joint hypermobility syndrome. Has that already been diagnosed? Funny about the math stuff, I was like that most of the way through college. I couldn't remember ANYTHING, but I could derive ANYTHING. I was always getting dinged on math exams in college for deriving all of the theorems I needed for proofs rather than citing them by name. My profs used to tell me that it showed "mathematical genius" but that they still needed to take points off...I just plodded along like that because there wasn't really any other option, and on balance, the advanced math classes were my easiest ones. I've always envied the calculator-brain math gurus. They have a skill that's useful. My math-brain isn't very useful. I got straight A's through graduate level math classes at Harvard, but calculating the tip at a restaurant still makes me dizzy...

Not much point to this post, but I had to share it somewhere where somebody would get it, because I'm shell-shocked today. I kept a diary and journal of dreams, pretty religiously, from age 3.5 to age 40. As far as I knew, the many volumes of my diaries were all in sealed rubber tubs in the basement. I've never read them, but I figured I'd go back and read them some time late in my life. But then today, I was looking for something in my office closet, and I found a volume down on the floor. I picked it up and recognized the dates as right around the time that anorexia nervosa, OCD, anxiety, and a bunch of other problems that I hadn't even remembered, suddenly hijacked my life. So I opened it up. I can't believe how painful it was to read, and I couldn't even get through the bad parts. Of course I've always remembered the facts of the anorexia, the obsessiveness, the compulsions, etc... but I was not prepared to read my own completely unguarded descriptions of the excruciating isolation, the utter hopelessness of waking up every morning only to slave more to compulsion, the unrelenting fatigue ("fatigue" doesn't seem a strong enough word, it was more like continuous verge of collapse), the torturous sensory issues that I had all but forgotten about (I had completely forgotten about the need-to-pee issues), the brain fog that made homework that was usally easy impossible, the challenge of trying to explain to a teacher that I just wasn't capable today for some reason...and then the humiliation of getting a lecture about my attitude or some such in response...the yearning for even a bit of being "normal", the sheer pain. It was more jarring than I ever thought it would be to read. And sure enough, right there in black and white, was a description of being sick right before it started. I had written frequently for a while about normal young teen stuff, crushes and cliques and stuff (that part was hard enough to read ), then in the middle of it all was a paragraph about how I must be getting terrible allergies or something because I felt like absolute $hi# physically and in my sinuses...but it was December, not a big allergy month in NJ. Then a month went by with no entries, and then I reappeared with completely different handwriting, and a different life. My handwriting changed oddly throughout the volume, and there are margin issues that I know other people have mentioned in their kids. Once I saw that I remembered the feeling of struggling with margins. I just can't believe that was me. I can't believe that I was able to hang on through those years. It makes me fear deeply again for my children, though they're still doing really great - 100% - at this point. Amazing that eventually, it did all just go away...the girl writing that volume had absolutely no idea that a few volumes later her story would become a happy one. That's perhaps the saddest part. The complete inability to comprehend that it will pass, or to imagine what the "after" might look like. Like I said, not much point to this post except that I'm horrified and needed to write something down. Thanks for listening. And for understanding.

What a great writer you are, Emerson. Keep at it. But I'm sorry that you're in pain. I know what it's like. It will get better; hang in there. And keep on writing.

I agree that PANDAS has to be more than one thing. Surely there are some who have Lyme, and surely there are others who don't. I cringe when people on this board state, uncategorically, that X works better than Y, or Z never works. Everyone means well and everyone is hoping that they have the answers that can help others - but I think that it helps most when we are able to say "here are the specifics of my situation, and here is what I've seen over this length of time" rather than just e.g. "Augmentin works the best" or "high dose IVIG works the best." We simply don't have those kinds of answers at this point. And, IMHO, not one of us is equipped to tell any other what kind of medical treatment they should be insisting upon from doctors (other than testing, perhaps); I don't believe that anyone here has a scientific database from which those conclusions can be drawn. I've been on here long enough to see fads come and go, people pushing steroids, then avoiding steroids. Pushing one IVIG ONLY, then... well maybe 2 or 3. Saying one needed to clear infections before IVIG...or saying that one needed IVIG in order to clear infections. A year ago or so, everyone had mycoplasma and needed biaxin. Now it's Lyme. So I applaud nevergiveup for challenging this notion that "multiple IVIGs are bad" and trying to sort out the rumor from the truth. I have been bothered by non-doctors, let alone non-immunologists, strongly suggesting that I was doing the wrong thing by allowing my kids to be treated with monthly "low dose" IVIG. As far as I can see, my kids, who are in fact getting monthly mid-dose IVIG (low-dose by board standards) despite the advice I got here (but in keeping with the advice of a PANDAS-experienced, Stanford-educated endowed-chair pediatric immunologist at one of the world's best universities) are more symptom-free than just about any other kids here. I have been very tempted to stop visiting this board altogether, but I feel like I have to keep putting our experience out there to let people know that there are success stories - at least for now in our 6th month - with the approach that everyone seems to have concluded promises disaster. I think we're stuck doing a tricky combination of thinking out of the box and reality-checking our thoughts. I look at my family, with generations of chronic/recurrent infections, rheumatic fevers, and cancers associated with immune deficiency...and no-one living in a tick-infested area - and I think "gee, I wonder if my kids' immune systems could have been messed up by Lyme...even though they test negative by Western Blot", and the idea just doesn't pass the red-face test. If my kids had weird stuff happening out of the blue with no family history, I'd probably focus more on the infection-wrecked immune system hypothesis. A good doctor should take all of that into consideration in suggesting the best treatment protocol to start with...and then should adjust it from there.

I also want to add that sometimes, in cases of significant immune deficiency, it may not really be possible to treat the infections first. We tried for months and months, with high doses of all kinds of antibiotics, to get rid of active strep infections in the boys, and the infections just kept getting worse until they got IVIG. If I had to do it again, I would have gotten their immune systems tested earlier and gotten them onto IVIG when we got the results we did, before trying a dozen different courses of various antibiotics.

A day at the beach sounds great, a place where the kids can really entertain themselves, interact with each other if they want to, happily play on their own if they don't. I've got to run now but later we should start a thread assessing interest.

We saw the red 40 connection in my ds6 WELL before we knew anything about PANDAS. It was impossible to miss. My husband and I also feel nasty if we have too much (like if I have a giant cherry soda...ugh). I understand that it has now been withdrawn from the market in many countries. I've never seen my ds4 to react to dyes, but we try to minimize them just to be safe. I did notice that after the high-dose IVIG we had in April, ds6 stopped reacting to stuff even when he did get some. Now, though, I'm wondering if he might be a little more reactive again. Haven't seen any rages, extreme defiance, or anything like we saw before, just sometimes he seems a bit "unwell" after eating e.g. brightly colored birthday cake or soda at a party, and he doesn't look quite right under the eyes for a few hours. I confess that I am hypervigilant at this point, though, so I might be seeing things that are happening in all of the other kids too, but that other mothers might not make anything of. In any case, he knows not to eat red so it comes up only rarely. We haven't noticed associations with other dyes. Incidentally, I was reading a book chapter on allergies once as part of my immunology studies a while back, and one of the last sentences in the chapter had something about how kids with extremely high IQ's tend to react very badly to Red 40. I tried to find a published reference for that afterwards but couldn't.

No response at all from the celebs? Did you have an direct "in's"?

By the way, surfcity, for me the "all the other options" piece is one of the things I like about UCLA (even though I hate driving there), given that my kids have broader issues than PANDAS. Any time I've had a concern about stuff possibly going on with my kids (kidney issues, gut issues, etc.) he has been willing to run the appropriate tests and/or refer to the appropriate specialist at UCLA "if there is any question of...". I then feel like our doctor will "vouch" for my kids' situation and that I'm not just some paranoid mom, and I don't have to start from scratch trying to find a specialist who "gets it". He knows how to direct us to the individuals in the respective departments who will be best for their particular situation.

I would love to do a Los Angeles area group once every month or two. I wonder if UCLA would give us some space. Or I'm sure we could find a church or Y or something to meet at... or a park, so the kids could play (if we wanted to bring them, maybe not a good idea). Or we could rotate around.

Yes, Mozart was thought to have Tourette's, and died of strep. http://www.guardian.co.uk/music/2004/sep/01/classicalmusicandopera1

And yes, the crotch-grabbing was perhaps a tic!! Maybe he "had to go" constantly like PANDAS do, and that was his only way to deal with it on stage My boys certainly grab plenty when they have to go.

I thought the same thing when I was going through the list of celebrities with issues. I do think people with PANDAS have "gifts", and PANDAS doesn't need to stop them. Re. Einstein, we are friends with the Einstein family, and his daughter, interestingly, has lupus. I was also thinking that someone with connections needs to reach out to some of these celebs who seem likely cases, like perhaps Jessica Alba and maybe even MJ's estate (I wonder about his kids...if they are even his children...) and draw some attention to the disease.

Just one thought, if you strongly suspect strep. My kids did zith for a few months and then had a breakthrough episode of impetigo (strep). I asked their immunologist about Augmentin, but since we knew it was strep, he didn't think that would be the best choice. We switched to penicillin, which I was very skeptical about, but I'll be darned if it didn't clear them up. I have a feeling that it may not be possible, long-term to always stay on one antibiotic. As new infections come up, we may have to tinker here and there to fight them. That having been said, maybe it's herxing? When we first started penicillin, one of my kids got significantly worse PANDAS-wise for a couple of days (days 3 and 4 on pen) - even though he hadn't gotten PANDAS symptoms when he first got impetigo, but I held with it since his impetigo was getting so much better on it. Sure enough, he woke up on Day 5 announcing that he felt completely better both in his nose (where the impetigo was) and in his mind...and he was back to 100%. Maybe you need to test for other infections? Others here have had good results with antibiotics once they figured out what organisms they were dealing with (i.e. strep, mycoplasma, lyme) and were prescribed accordingly.

Here's some stuff I found quickly on line: http://www.disabled-world.com/artman/publish/famous-ocd.shtml Check out Jessica Alba and Charles Darwin. Stinks of PANDAS to me. Also really gotta wonder about Michael Jackson, who had lupus and of course vitiligo (an autoimmune skin condition)... and bad body image issues and OCD. In his autopsy, they also found arthritis and "chronically inflamed lungs". Hmmm... I actually got started on this thought while I had Jackson's "This is it" on the tube while I was working, and I thought as I watched, "I think he has [had] PANDAS...."

And how DO you sort out Herxing vs. negative response? My best guess, based on what I've seen in my kids, is that Herxing (what I assume is herxing - reactions immediately after first IVIG, reactions after starting a new antibiotic that ultimately kicks the infection) is characterized more by its erratic nature. During these periods, my kids have been jekyl and hyde - great all day, then BOOM a sudden quick PANDAS punch (little as a few seconds, much as a couple of hours), then back to good. Very quick alternation between being totally normal and doing strange stuff - for as little as 4 days, as long as a couple of weeks (after first IVIG). When they were sick but untreated, it could vary some but was much more steady state.

Wow, by the time all of you Lyme folks, those with other multiple non-Strep infections, etc. get sorted out, my kids may be the only "classic PANDAS" left on this board! I thought I would add to this that when I had my REALLY bad, more-or-less chronic episode as a teen, I turned out to have multiple infections. I was treated with multiple antibiotics simultaneously, and the PANDAS did resolve (that episode anyway).