JAG10

Malke- I'm not really sure. Perhaps the "stress and trauma" to the oral tissue affects the BBB is what happened in my dd's case??? When one of her teeth gets a little loose, she's got to yank it out; my other dd will let it hang by a thread forever. DD11 is on full strength abx, so I don't think it is bacteria like some others have mentioned with stubborn tooth infections. But it is traumatic to the tissue so close to the brain, IDK-just guessing. BTW, this morning's Kumon practice she was back to 20 minutes and without all the anxiety. Whatever it was, it was short-lived and minor. Still, it makes it hard to have consistent expectations while raising your children while this kind of fluxuation is a possibility.

DD11 had 2nd ivig 5.5 weeks ago. This past week was interesting. Last weekend, she experienced notable cognitive clearing, commented on how much easier it was to read and become lost in the story, ect. She also experienced great success with Wii games that she had been playing on and off, suddenly unlocking one thing after another she had never done before. DH said with his full gaming effort (insert L on forehead here ), he could not beat her. Well, with this new clarity and skill, came the uptick in gaming obsession. I realize those games are built for typical kids to become addicted, so I observed for a few days, but by the end of the week I told her I was putting the kabosh on the gaming to help her break the obsessive cycle of it all. She acknowledged I was right and did not outwardly object. That was yesterday. I've also shared dd is doing Kumon to establish automaticity with math facts/operation manipulation. She does one packet every weekday and two on Fridays, Saturdays and Sundays. They are sequential. She did one first thing this morning that should have taken her between 20-30 minutes; it took her 18 minutes. Did I also mention she lost a tooth this morning..... This afternoon, she sits to do the second packet, almost the exact same material. I watched her squirm, sigh, and breathe with anxiety; pull her knees up to her chest and squat like a hen on a wooden chair. After 44 minutes, I took it from her...she still had 6 pages to go. This regression in math ability occurred within a 5 hour period of time. She was pale, warm and eyes dilated. I gave her 2 ibuprofen. This too shall pass, I know. I suppose it is realated to the lost tooth, but maybe not. Who knows? I thought it was interesting to have a two measurements, timed to compare in such a short period for something more subtle and wanted to share. She is on daily Zith and probiotics which I feel has been a better match for her than the Augmentin. Health to us all Don't forget about your clocks tonight! Jill

http://www.latitudes.org/forums/index.php?showtopic=7478&st=0&p=60743&fromsearch=1entry60743 Here is an interesting similar thread from last year. I remember having a similar conversation with a compatible level of frustration over sudden onset. I recall Buster telling me that it was PANDAS criteria because Swedo says so and she coined PANDAS what it is. I agree, everything is sudden at some point before it.....was

I wasn't sure whether to put my two cents in "is it ever too late" or this thread, but I really wanted to piggyback on the idea of a protocol of ruling out infectious/immuno-dysfunction causes as a starting point in mental health. In my eyes, that is the ultimate goal. Even from our tiny sampling on this board, finding factors that are common to all of our children has turned up empty; this is bigger and we all feel it. The incidence of children presenting with behavioral/cognitive/learning issues in our schools continues to explode so much so that soon all teachers will need to be dually certified general/special education. I don't think ALL mental illness stems from infection/immuno-dysfunction. Certainly individuals can experience traumatic events that change them forever and living through PANDAS/PITAND symptoms for an extended period of time could count as a traumatic event! I know it has changed me forever, so I'd be naive to think that even if dd was "cured" that this had no impact on her development or self image. And perhaps, in the end, a positive impact, that she is a survivor and how to separate those who genuinely care for you from the fluff. But the idea that our children are simply being conceived with more and more serious mental illnesses, younger than has ever been previously reported in the past, that they are unlucky in the gene pool of life....c'mon medicine, wake the heck up!!!! You're being outsmarted by microbes.

Bill & DC Mom, Can you post this on the PANDAS board too? Regardless of current status, EVERYBODY needs to be concerned with prevention!!!!

I would think it's important to examine the prescription drug policy since the "IG" costs much more than the "IV" does and the IG is what usually requires the pre-cert.

Oh, it was a whole cocktail!!! They said first she needed a mood stabilizer (2mg Abilify), then the SSRI (25mg Zoloft) then a stimulant (Adderall XR, 20mg) Every time we would do a med check, it was a mess...a lot of...well, this is a little better, but now this is worse....kind of reports. Negative changes in behavior were never attributed to the meds. Really? Because we've never seen her be so sad and lethargic before? Oh, that is her underlying mood disturbance that was dormant before treatment. Huh? I mean, I trusted the psychiatrist and tried all different brands of meds at all different doses in those 3 categories mentioned, but it was all wrong and there was no magic combination that worked for her. Dr. Elia was my second opinion after a few years of this and once she left the trail of bread crumbs that led to PANDAS, but then wouldn't treat because dd "had it too long already", I was off finally in the right direction. There is NO underlying mood disorder, it was all bad side effects from meds and PAND/PITAND. She's a happy, sweet kid whose brain and self esteem have been through more than I can bare to think about (and that kinda thinking isn't productive anyway!!!) She's off all psych meds after 4 months HD abx followed by HD IVIG. I don't plan to do another scan because it was an out of pocket fortune with the psych eval. and I don't think it would be of any benefit to us.

DITTO I don't think they will budge as an institution until there is more published to back up the different treatment options. Not worth the time or fight.....and it won't do you any good anyway. Save the wear and tear on your soul and find those on board already if that is an option for you.

Adam, I have only had a SPECT scan done for my older dd11 and it was done when she was 7. I took her to the AMEN clinic in VA because, at that time, we thought it was severe ADHD primarily and OCD as a second runner up. SPECT scans are not known for their precision and many MDs will dismiss them for that. What the scan did show was global over-activity around the perimeter and anterior cingular gyrus which I was told was the "gear-shift" for the brain and what is an issue in OCD-like behaviors (getting stuck, obsessed, grudges, fixations, ect) I was told she had Ring of FIre ADHD which is a combination of severe ADHD, OCD and mood disorder (even though she has never been a rager, TG!) I shared a copy of these scans with Dr. K when he was treating my dd and he found them interesting. But AMEN had NO idea as to the underlying cause. I have since tried to email Dr. Amen about us 3 years later discovering the underlying cause was PANDAS, but he is quite the celebrity and not easy to get to, if you know what I mean. Are you saying Dr. K thought Nathan was too old for treatment by him? I thought I had heard that he had treated some young adults as old as 20 recently. Well, kudos to Dr. Chugani for being a bold pioneer of medicine! Nobody's child, no matter how old, she be told they are too old to try and obtain some relief of symptoms for the highest quality of life possible. When I first took dd, 9 at the time, to Dr. Elia at CHOP, she said that my dd had had PANDAS too long for treatment other than SSRIs which had not worked up until that point anyway. She was soooo wrong!!! We have been to 3 PANDAS docs since, she has been off all psych meds since last May and she is 85% symptom free. She had her 2nd ivig 2/2-3 as we attempt to clear up the remaining focus, task completion issues and go back to fill in the missing "learning holes." Kudos to you for continuing to work the problem! Prayers to you and Nathan. Keep us posted on his response to treatment. Jill

Yep, it's livedo reticulitis. Dr. T helped us figure this out. My dd11 had this all over her arms and legs. A year ago, Dr. T didn't think it was related to PANDAS. It completely went away with one HD IVIG in my dd, not that that makes it a PANDAS symptom, but heck, I'm just happy it's gone, call it whatever you want!

Somebody help me out here... Now we are talking about strep pneumonea? I thought we established this wasn't the same as strep gA? Does Dr Cunningham or Dr Swedo talk about this at all and where?

Can you reference the specific article you are referring to? The only info I could find about strep abscess wasn't relevant in that the infection made its way to the brain via skull fracture from an accident.

AHHH!!! My dd7 brought home strep mid-Aug, dd11 was at 12 week mark, so not much donor IG left at that point. She had about an 8 day backslide before recovering with treatment dose abx. She then experienced a series of exposures in the fall that stalled her progress, but she was always able to return to that 75% improved mark. After that, I had dd7 scheduled for a T & A (which we were planning on anyway) by the 2nd week of Sept. DD7 shows mild PANDAS signs, so it was just as much for her as Big sis. I'm sure you emailed doc...what did he say??? jill

One HIGH DOSE IVIG stopped dd11's skin picking (akin to trich) immediately and has not returned since.......and it was really bad.

Hi Mary, I would say mildly. I saw more of that "turning back pages", herx, seeing symptoms you haven't seen in awhile....that mostly occurred during her abx treatment prior to IVIG which was amox., zith, then biaxin collectively for a total of 4+ months. She was an elevated myco-p girl in addition to the high ASO and sky high anti-DNAse B (but no known history of strep) I really think she was in a good place "infection wise" prior to IVIG #1 and that is a contributing factor to why she did so well. She had a string of infectious exposures this fall which interrupted and stalled her progress, one right after another. Abx protocol was too weak, IMO. By the end of Nov, 2010 she was back on daily HD zith. Again, I think this put her in a good place to receive IVIG #2 and thus far very mild uptick in symptoms, a little hyper activity but cognitive clarity with it so...no complaints here! I feel like she is in a great spot now and we want to get that IgG up. She is having another treatment 3/30-3I. I'm pondering a plan for late Aug-Oct, that seems to be her trouble zone....Will HD zith do it? Perhaps she can be on lower (proph) dose earlier in the summer then boost it up in mid-Aug? Her lil sis brought home strep in Aug; dd11 never swabs positive. May I ask....and I realize it is hard to tell with treatments in the mix as well, do you notice any differences with puberty onset? No menses with mine yet, but all the other early puberty signs are there. I'm praying we will create the perfect antidote of immuno-modulating therapy, abx protections and puberty to extinguish what the perfect storm set into motion so many years ago. Let's pray it! Jill

You are correct. Buster does a great job of explaining it and many docs get it wrong! Carriers swab positive (so the bacteria is continuously hanging out on the surface tissue), but never develop infections (maybe it's called colonization?) as indicated by a rise in ASO/anti DNAse B.....the OPPOSITE of what is going on with your kids. Maybe Buster pinned something up top or you could search carriers on the board; it has been discussed several times.

Alright, this question may demonstrate the extent of my ignorance, but we're all friends, right? The 24 days was from ivig to first episode (this is the one that is exactly the same thus far), then 5 weeks, then 4weeks (I'm sure, I have the dates written down) It (nausea/vomiting/mild fever) is diminshing over time........... this past time, she felt some very brief nausea, but never vomited (I would've thought /die off/herx/whatever would last longer than an hour or two, no?) Could it be cell memory? Like nothing is actually dieing off but there is a memory of past die-off occuring in a cyclical fashion? She never had Lyme, but did have elevated myco-p which months of zith & biaxin, aug. took care of....but maybe there is a fading memory? Well, if it is possible I'm sure glad it is diminishing cause we'd like all those destructive b-cell, t-cell memories to be wiped out and never heard from again!!!! Amen!!!

Fantastic! Sounds like you were as cautious as sanely possible. Prayers to all the Saints for little Samantha!!!

Very interesting observation Bronxmom2.....I had similar thoughts myself pre-pandas diagnosis, and mine was hardly ever sick, so it really stuck out in my mind. Then I remember feeling evil I wanted my child to be sick so I could have some normalcy! I have no idea if there is any truth to it, but I remember having the same thoughts...those darn antibodies actually have something to "work on" now, probably nothing to it, but seems like that is what is happening.

Adam, Your post is very confusing to me. Your doctor told you the strep A bacteria is in the brain? Not my understanding. The Basal Ganglia is inflamed from anti-neuronal antibodies attacking it ( these menacing antibodies think they are attacking strep because of molecular mimicry.) The auto-immune process can be in full swing even after the infection has been eliminated; those bad, anti-neuronal antibodies can be cranked out in a chronic fashion and that is what is causing the inflammation of the basal ganglia via breach of the BBB. I would also ask this doctor where he is getting his info regarding permanent brain damage. Again, not my understanding after seeing 4 PANDAS experts and reading this board over a year; quite the opposite. You can also search the forum or tagged literature that refers to a significant percentage (>40%) of children who "outgrow" PANDAS (post) puberty with no residual symptoms (or damage.) I don't think anyone can say there is NEVER a possibility of damage, but all the brain damage chatter is speculation. I'm not one fluent in quoting the research as many on here are..... There is a FAQs page pinned at the top that can better articulate these points. I would agree with you on the importance of early intervention to minimize the impact of PANDAS symptoms that sour or devastate childhood. Dr. K used to claim that treatment was most effective if it began before the onset of puberty, but more recently he has treated some older patients as well. Best wishes that Nathan experiences some symptom relief from treatment. Jill

Hey Melinda, Just wanted to send out a cyber-hug. You are a fabulous mother and your daughter is so fortunate to have you fighting for her at every turn! You will get her back on track again by whatever means effective. Take care & we've gotta get that coffee soon! Jill

IVIG #1 occurred May 25-26, 2010. DD had the massive headache and some nausea after day two, then was fine when she woke up the next day. 24 days later, she spiked a mild fever and vomited once, then was fine again. This specific symptom of mild fever spike, single occurrence of vomiting and then completely fine happened again 5 weeks later, then 4 weeks later then stopped. IVIG #2 occurred Feb 2-3, 2011. 24 days later, this past Saturday, she had a very slight elevation in temp (99.5) and nausea (but no vomit); it lasted about 2 hours, then POOF she's completely fine again and playing softball. The exact same number of days later????? Pretty freaky, huh? She's doing great, by the way

Many questions, not as many answers... Is one of your main questions why do some kiddos explode with symptoms then go back to normal or nearly normal while others are in more of a chronic state of bad and sometimes even worse? I think most kids start out with the dramatic wax and wane pattern (even though for some under age 5 that might be difficult to tease apart from some typical periods of equilibrium and disequilibrium.) If PANDAS goes untreated, misdiagnosed, ect. the shifting farther and father from baseline can eventually "go chronic" in that the bad anti-neuronal antibody faucet is broken in the turned-on state and Big Guns are needed to try and turn it off. THe symptoms no longer wax and wane bcs the BBB never "closes" and the inflammation persists. One PANDAS doc explained it as a sprain that you keep walking on and never allow to heal; it's not "broken", there is no lesion like in a stroke, just swelling like in a sprain, thus no permenent damage if it could just have a chance to heal. It seems some kids have their initial onset and are chronic immediately, at least that is the way Sammy's story seemed to play out. I'm sorry, I probably didn't answer one question you asked!

Everyday Math.......isn't so bad if your kid has an old school teacher who knows it needs to be supplemented with a DAILY dose of the facts that should be mastered in that grade! I see older teachers doing this on their own. Kumon will place your child where they demonstrate mastery. Many children go there for enrichment. But it is a daily commitment, thus the mastery. Online programs are also an alternative if you have the discipline for daily practice without having to be accountable to an outside source. It is a working mom's luxury to have the packets put together for me and have the girls accountable to someone else also, but if I had more time at home I would take advantage of online programs and set up the structure for daily practice. I really admire parents who home school their children. I can work with other peoples' disabled children everyday and exhibit great patience, but I'll admit it much more challenging to do with my own. Four years ago, dd11's psychiatrist suggested I home school her and I just knew I did not have what it takes to pull that off and keep our mother-daughter relationship intact. It it my short coming, but at least I am wise enough to see that in myself.

My dd11 is in 5th grade. She suffered with PANDAS throughout her entire elementary experience. Anyway, I signed her up for this program called Kumon (you can do math and reading, but we just do math.) Kumon's approach is much more traditional than Everyday Math in that there is lots of practice of the basics and it is timed (but not in a pressured way.) When she took the placement exam, they put her back at a 1-2nd grade level and started her out practicing addition. That was about 2 weeks ago, and she has already progressed 1 level to 2-3rd grade. I don't think she is really 3-4 years behind in math at all and she isn't failing math or even in the lowest class (her last test was on adding mixed fractions, finding common denominators, adding positive/negative integers.) It's just that there are holes, lack of mastery of the basics that will always haunt her if we don't go back and achieve automaticity. That is what Kumon is doing for her. I put my younger girl in the program too. She does one packet a night and it takes her about 10-15 minutes. DD11 does two packets Thursday thru Mondays and then one Mon-Wed. so as not to overload her. We are also practicing 1-5 multiplication tables, which she had, but must have vanished into her PANDAS hole, nightly, one pass, to get her ready for multiplication in the next level. Believe me, it was a deep narcisistic wound to see dd11 start at a 1-2nd gr level. I was always a math whiz and obtained a great deal of confidence being a girl who excelled at math. I've always wanted that for my girls too. But I just keep saying to myself, slow and steady wins the race. We will increase to 3 packets in the summer to get her to where she needs to be. She just had her 2nd IVIG in the beginning of February and she is well on her way regarding puberty. I really believe her darkest days are behind her and we will win this race! BTW, Kumon in Philadelphia is about $100/month. She goes into the center twice a week to do her packet so they can monitor progress. We are in and out in 20 minutes and there is a four hour window to go 3 days/week. So far, I have found it very convenient. I can see both girls' confidence increasing as well as their respect and interest in accuracy and efficiency with math. I keep telling dd11 there is no way but through this challenge. Now she sees it is obtainable! Thought I would share this info and success with you. If you google Kumon, they have a center locator. If there isn't a center near you, perhaps, if you are interested, you can call one of their centers and ask for a recommendation. Best wishes! Jill