JAG10

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son. Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance. Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much. If you knew it would be paid for in totality, would that sway you toward giving it a try? For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family. Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision.

It was the total IGA needed to be above 20 for Dr.K's go-ahead, but others chimed in different docs are comfortable, but use a different brand of IVIG. Where in PA do you live?

Meg's Mom, First, I have to say, the "Bon Jovi" comment is priceless and going to have to stick around awhile!!!! Also.... Did Dr. Cunningham make any mention of the Pepsi Refresh Grant? When it's all "official" I'd LOVE to see her put something on YouTube!!!

At some point in time I remember hearing that Dr. K's patients have been suffering on average 56 months before they end up seeing him.

Peg, this tango with the psych is priceless! When she mentioned the word controversial I can just hear you saying "This is true, but fortunately more and more physicians are getting their heads out of their arses everyday

What does it mean if myco-p is "running high in the general population" at a given period of time? Does that mean it could increase from IVIG?

Meg's Mom, There have been a few parents who really swear by ERP. My dd10 did CBT at U of Penn with Dr. Marty Franklin, he presented at several sessions at the OCD conference last weekend. It didn't work and it wasn't bcs of his skill. I think the difference is if you have a child that has other interfering symptoms like cognitive fog/decline, behavioral regression depending on how it presents, ect. It is very expensive, especially if the dr. has a great reputation.... I would just caution parents to critically question if there child is in a place where they can take advantage of what they are learning. To Marty's credit, he wanted to give it a try, but didn't waste too much of our time of money once he got to know her well enough to see how she was functioning. However, I felt like I learned things that I use for myself.

My dd10 had a turning point episode in March of 2007, from episodic to chronic and I always thought that was myco-p piling on the scene as she had a long, persistent cough the end of Feb beginning of March; it lasted weeks, no fever. But PANDAS started years before that for her. AND Worried Dad-LOVE your photo!

Man, I wish I could help, but I just really don't know. But, I think its the IgM that peaks w/ 1st infection. My impression from reading (more than I can comprehend!) is that IgM is produced 1st w/ new infections, until the IgG becomes plentiful enough to take over,(or IgM turns into IgG?) and then, subsequent exposures to the same microbe should trigger immune memory- which is mainly an IgG response. If I don't have that right, I hope somebody will correct me! So based on my understanding your results do not make sense to me...unless the IVIG does something to immune memory- or does "rebooting" the immune system cause it to go back to the IgM production? I PM'd IowaDawn too; her child's went up from 3 something to 6.something?? and no rise in IgG for them??

AnyLabTestNow finally got back to me. Here is the info on Strep titer testing: DNase-B Antibody $193 Preschool ≤1:60 Titer School ≤1:170 Titer Adult ≤1:85 Titer Anti-Streptolysin O Antibody (ASO) $49 ≤17 Years <150 IU/mL >17 Years ≤200 IU/mL They were nice enough to attach a $10 off coupon, not sure how I could post that, but if you PM me your email, I could send it to you.

Maybe Buster or Kim or someone will know if it looks like a lab error or some type of consequence of IVIG? Dr. K only ordered 3 tests, so he must know what he's looking for and why, I'm just being impatient. Kind of unnerving, though. And I always thought elevated Myco-p went w/temper, raging issues which dd10 hasn't/doesn't exhibit. Bon Jovi, I need you

Vicki - unfortunatly, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors. Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval. That is exactly what I mean! Graduate students, lots of them designing surveys under the supervision of University Drs. as their thesis requirement. But who is actually teaching/supervising with the interest? I would think Dr. Leckman's students are too advanced. Diana is collecting some data of those who have contacted her, but again, I think people are sharing their stories and some specific info is being pulled from that. I'm not sure, perhaps she will chime in. Certainly that is an overwhelming task on one mom.

Am I ever going to get this all straight???? DD10 tested in February 2010 Myco-p IGG- 1.61 IGM- 667 Biaxin from Feb until May 25 when had IVIG Re-test July 2010 Myco-P IGG- 3.02 IGM- 764 ASO down from 448 to 277 DNAse B down from >1360 to 340 So... what's up with the myco-p elevation? I thought IGG reached its peak on first infection? Peg... someone...help?

I did read the book awhile back, but I have a couple questions/comments. Is it true that Sammy had ONE sudden onset episode, with nothing minor brewing previously, and from that ONE sudden onset, he went chronic? I mean, that was it, right? He contracted asymptomatic strep at age 10, mom had no idea, and he went from bad to worse and stayed there until high dose abx, correct? No sawtooth whatsoever? Is that pretty unusual, even among all us zebras? Or at least unusual for the over 5 y.o. child? I'm TOTALLY speculating, but I wonder if Sammy was more the "got the really nasty strain of strep" kind of PANDAS and that those kind of PANDAS are the ones with the chronically high DNAse B; totally my wild speculation. Are these the "hyper-immune" kiddos and theoretically, there bodies are chronically co-producing an abundance of DNAse B, ASO (?) and anti-neuronal antibodies? That's why they can be "tracked" by DNAseB titers? So, they managed to achieve an "immuno-cool down" with high dose abx over several years... Is this the same or similar nasty strain in Dawn's family with the crazy high titers? (How r u all doing, btw?) Another note, and take this for what it is worth, but when Dr. T spoke publicly with Beth several months back, he commented that Sammy continued to exhibit mild signs of OCD. The mother later requested he retract that statement, which he did. Dr T. said he made that comment based on his observations of the young man not on parent or patient's report. So, he saw something, albeit probably mild and not interfering with Sammy being a successful, accomplishing young man (maybe he was shaking his foot, rubbing his eyebrow, clearing his throat or shifting in his chair in a chronic, repetitive manner that would only be noticed if you were looking for it?) It is with this in mind that I wonder if Sammy did indeed have any minor signs brewing as a child that were just "invisible" to the mom's eyes? Last thing, promise; Is the ONE abx case being referred to by those discussing Dr. K's position; is that WorriedDad's child who did not experience success with multiple ivig, but has had success on high dose Augmentin or is that ONE an early detection case?

Perhaps that message will have been conveyed during this meeting they are wrapping up. I don't think Dr. K wants to or could possibly handle collecting data like that in a meaningful way. He's energetic, but older and basically a one-man show spread thin not only here in the US, but with commitments outside the US as well. I also think this group of docs being discussed does their best to keep costs as reasonable as possible given their level of expertise. So many battles to fight: acceptance, insurance, funding, research, recruitment......

We are all part of the experiment, which is better than the current alternate-do nothing or psych meds that don't usually work. So, we are forced to be "okay" with that. But how do we get ANYONE to be the centralized tracker of some data here? Even Dr. Cunningham doesn't have a systematic questionnaire, but more "send us your child's history." More certain answers are years away. There is so much bias by what each family has available to them in terms of location and financial resources. Those blessed with healthy financial resources may be obtaining a few different opinions, a few different tests, a few different trials. Each expert consult is about $500/hr, Cunningham and Igenex testing is $400-500 per test, per kid. Then there is the bias from the doctors side in terms of what they can legally and logistically provide without running themselves into the ground or being harassed by the prescription police. Is Dr. Latimer the only expert that has all the options readily available to her? Can Dr. K or Dr. B order PEX when they feel it is appropriate? Has anyone recently had IVIG or PEX ordered//executed by Dr. T? Does Dr. Leckman currently order treatment? Is Diana P the only one attempting to keep centralized data? Who knows what the big announcement will be, but it seems like the centralized conversation is the best news yet.

You go, sista! Great post!!! I'm for anything that gets the best results for that kid, period! I tried to use the little vote up link in the bottom right, but I couldn't get it to work.

I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority? I PM'd it to you.

This is SUPER, Peg!!! Is there an elevator in the building where she attends ESY? If so, maybe you could ask the principal for access in the afternoon when others have left for the day? What I loved about the eye contact is that it is meaningful eye contact and not "what color are my eyes" contact.

The only study I remember early onset of OCD being used to help differentiate typical OCD from PANDAS was that one somebody posted from Hawaii. As far as pinpointing the year of "early onset" in PANDAS, it is true that for many of us it will be a guestimate and often many, many years ago.... I like Peg's idea. I specifically remember reading T. Brazelton's books, I think it was in TouchPoints, where he talks about periods of equilibrium and disequilibrium. Equilibrium is where everything is "normal", content, chugging along just fine, but these periods are interrupted by periods of Disequilibrium where there is turmoil and tantrums, disruption and sometimes regression of acquired skills, and sole focus on new skill the child is attempting to acquire which then leads to another period of equilibrium. OKAY..... you mix that in with a 2-3-4 year old and the waxing and waning of PANDAS and the cascading of the child's baseline of "normal" drifting, that goalpost creeping farther and farther away from their true baseline and add in how long this has been even a possibility in online conversation??? For us, we're talking 2002-2004, who was talking about pandas then? You think pediatricians are laughing now??? I realize I sound plagued by guilt. I think many of us has an aspect to PANDAS diagnosis that is a thorn in our side and for me it is this early onset subset, particularly those who were early onset before any hope of identification realistically existed.

My dd's IQ dropped 22 points (tested 2nd grade b-4 big PANDAS explosion and again in 3rd grade when in semi-remission on Azith.) between 2nd/3rd grade. I don't know that was the difference in the test type? Or PANDAS? BTW I suspect her first PANDAS episode was at age 4 (mild ocd, urinary freq) or even earlier. One easily identifiable problem that showed up after PANDAS-explosion in 2nd grade was "margin drift". In 1st/early 2nd grade her margins were neatly justified on the left. (I will try to post a picture if I can). After PANDAS, words would start at the left but then creep right with each sucessive line. (Worked with OT briefly on this, also had extensive eye/optometry evaluation. BTW AmySLP, she was originally suspected of having convergence insuff. but didn't once tested.) Handwriting was never great, but did get worse with PANDAS. Spelling has always been horrible. SHe has tons of trouble COPYING (from the board, or even copying a word on a paper in front of her). Math problems were mainly memorization/computation, algebreic reasoning was okay. In speech therapy at school. Reading is great (with wonderful comprehension/speed)...but did initially have trouble learning to read in K/1st grade (poor phonemic awareness, had trouble sounding out words, would look at the first and last letter and guess). The margin drift resolved a couple (?) of months after IVIG #1 (IVIG #1 was just b-4 4th grade). Handwriting was getting better during 4th grade, but was inconsistent. Better on some days than others. Math/Spelling never became great...maybe a sign of "incomplete healing" (IVIG #2 needed at the end of 4th grade due to return of PANDAS symptoms after FEB. fever). We're almost 2mo. post IVIG #2...I'm hoping for more healing, we're definitely not 100% (academically or otherwise). I'm thinking it takes time, and perhaps some "relearning"? dd10 is also going into 5th (Lord, have mercy on me!) -Yes to the margin drift (one OT friend told me that is a "cognitive" sign) -Mine was dx'd w/convergence ex-sufficiency, but that is line of vision, she never looked cross-eyed -Ditto to the copying issues -Ditto to the spelling and I'd throw in punctuation/writing mechanics in that group too. -Ditto to the high mathematical reasoning, shaky computation -Pictorial analogies 99%ile, written verbal analogies 78%ile on Terra Novas

As someone whose child ran around improperly dx'd for her entire childhood, I would have to agree. We saw no substantial benefit from vision therapy, CBT, hypnosis, reading support or even speech therapy for a slight lisp (and I'm an SLP, ouch!) (My dd's IQ dropped 2 standard deviations on one measurement!!) It is reassuring to hear the learning issues will resolve, but I'm sure patience is in order, at least in our case. DD10 is 7 weeks post ivig, and we have seen many substantial improvements, but the learning (reading fluency, math and simple ability to sustain attention that requires mental effort) appears to be her "lingerer" at this point; not OCD or hyperactivity or behavioral regression, those are all 80-90% resolved at this point. And, yes, I'm very grateful!!!! Can others chime in as to how long it took for the learning-type issues to resolve post successful treatment?

The experience of most that post here is that Dr. Elia will discuss the course of PANDAS, but that she has not been very responsive regarding treatment. Did you recently have a different experience? That would be WONDERFUL if she has changed her position! Dr. Elia was the first to suggest pandas for my dd10 and for that lead, I will always be grateful. But when I asked Dr. Elia to collaborate with Dr. K in March (and they do know each other per Dr. K) she did not even respond back to me.

Hi ZaxMom, Sorry! Reading this made me so irritated! DH and I lived in Baltimore all our lives. We moved near Philadelphia 11 years ago and the situation isn't much better here, I'm afraid. When you live near powerhouse children's hospitals like CHOP or Hopkins/Kennedy Krieger; they give no help and all the local docs obediently follow suit Try PMing Dee45, she lives in Fork, MD which is Northern Bel Air Road territory. She might have some suggestions. If you still don't have any luck, PM me too. I remember my mom mentioning someone she knew who works in research in the Baltimore area who knew all about PANDAS and I could ask Mom to ask her for a suggestion. jill

Mixed bag -fine with scissors -only played softball. She won placing ribbons during Skills Day for hitting, throwing at a target and running, but was actually awful at playing in a game bcs she couldn't pay attention to follow what was going on and integrate those individual skills in a meaningful way, i.e. the "thinking" part of the game got in the way, she just functioned on automatic pilot. -she had to quit piano because she could not track the music at all. She did well in ORFF with triangles and a two stick xylophone where she memorized rather than read music. She did attend vision therapy with optometrists at a PA College of Optometry; that's where we found out she was in the 1%ile for L/R. It wasn't very helpful. Yes, her skills would wax and wane, but over time just deteriorated overall; that baseline kept moving in the wrong direction. Interestingly, since IVIG, she has improved her ability to coordinate and integrate multi-skill tasks. I've noticed she's much more interested in her DS lately because she can cruise through levels she used to need friends to help her pass before. She actually said "the pandas must be leaving my brain now bcs I could never get this far before!" I just smile and think she must be imagining these little panda bears running around in her head