JAG10

I'm curious if it is a common trait of PANDAS to have extreme (either high or low or both) visual/perceptual skills in the PANDAS child or it is just mine. I don't know the professional jargon for many of these, so bare with me. My dd10 has exceptional "I-Spy" skills. You drop something small in the grass, she can find it. She always spots the critters in the woods that are so camouflaged to everyone else. She spots the deer that is about to dart out in the road 15-30 sec before anybody else can visually locate what she's talking about. Birds nests, money on the ground, that kind of stuff she ALWAYS spots first. She could draw three dimension objects at age 3. Directionality-bottom 1% in distinguishing left and right (geez-only 2 choices, must not be lucky either!) Tracking left to right-awful, skips words, the little function words, looses her place all the time! Her reading fluency was horrible last year regardless of material difficulty-she read more fluently in first grade than she did in 4th. BUT: give her a list of words to read top to bottom, she can read above grade level. Has written sentences right to left and spelled in reverse; not intentionally. Letter reversals, in cursive too; always left/right (b/d) reversals, never top/bottom (n/u). I can go back in time and track dd10's functionality in time by all the ups and downs in her handwriting; it's nothing short of freaky. An aside: This goes back to some of the other posts, MKUR perhaps; this extreme scatter of skills doesn't make sense. I've been so frustrated over the years at the medical community that wants to compartmentalize everything and not look in totality and ask WHY? This doesn't make sense?

Peg, this brings up a great point; that we need to start including the calendar year of onset, not just our children's specific ages. I think it was Tired Mom who referenced 2002 as a year she noticed many parents referencing, but this was my suggestion to add to the monkey map. Were there years that loosely correlated to areas? I know what you mean. I'm an SLP in a district that borders the city of Philadelphia. I had a student this year with so many issues; was out with strep and came back with vocal and motor tics om top of all the other issues he already had. I did call the mom and speak to her about pandas bcs she is an OT and I thought she would be able to pursue this if it unfolded that way, but "cagey" would definitely describe my conversation.

Many of us here are well educated and possess sound finances yet our children were misdiagnosed , improperly medicated/dx'd and some even hospitalized. Those of us with pre-teens and teenagers who had early/sudden onset in the first decade of this century are just recently presented with the opportunities for proper diagnosis and treatment. "Tenacity" has the best username because that is what it has taken (and often some luck) for parents to not give up, to not accept these changes and declines that don't make sense "bcs they were born that way" without some catalyst throwing that change into motion. As I've posted many times, in the Philadelphia area help in non-existent. I would help anybody seeking help. But I struggle with what help to offer/provide when there is no local, certainly no "in-network" help available. Unfortunately, at this moment we are still at the point where you need Tenacity AND some financial resources to obtain proper treatment.

Maybe we can talk the concierge into delivering a laptop to the table

I realize this isn't new, but does it mean anything if you add someone as a friend on their profile?

Really! Don't they all know we're waiting??? How long can it take to eat pizza? Maybe we should ask EAMom if she thinks Buster is still talking:o Cool, now there is an emotion decoder. I still wanna know how to get all of Chemar's cool little icons...

dd10 had ivig 7 weeks ago, progressing well in-laws came all last wknd for visit; 4 adults, 4 kids ages 9, 3, 3, 22 mos One 3 y.o. had a small code brown in our pool, how much time elapsed btw deposit and discover/water treatment is unknown Tues, dd7 complains of earache; we begin prescription drops we had Wed, dh complains of earache I didn't get in the pool; dd10 is on 250mg Augmentin Thurs. dd10 and dd7 get blood drawn/titers in prep for Chicago appt. 7/26 Today, 4am dd7 wakes me screaming of ear pain (i discover the prescription ear drops expired 3/10) Make appt., nurse practitioner identifies red ear canal/swimmer's ear (ok-that wasn't rocket science) NP tells me her throat is bright red, tonsils +3, patch on velum WHAT??? Rapid negative (first swab tests she has EVER had) 72 hr culture sent, coincidentally-titers drawn yesterday dd7; no throat complaints at all, no fever Both girls had their annual check-ups two weeks ago and were totally fine. Neither girl has ever had strep symptoms, both just have crazy high titers. So, now what? Is dd10 protected on 250mg Augmentin? I mean, she didn't get the ear infection, but...how worried should I be? ....or better worded, do I need to do anything for her? Dd7 was not put on abx, just the ear drops. Any suggestions or do nothing for now? Jill

lfran- What have you thought about the age of onset of "typical" OCD? I've read a few places 7, but most are 10 and over. Why do you think this isn't being raised as a PANDAS red flag? Aren't many of our kids developing OCD too young for "typical" OCD? And regarding IQ... I was told my daughter had co-morbidity of OCD, ADHD and mood disorder. When I asked why the cognitive decline, the loss of previously learned academic skills, the regression from the abstract to the concrete? Why were standardized academic and cognitive measures that began in the superior and above average ranges falling to the average and below average ranges? Our psychiatrist told us IQ decline was typical of children with co-morbid mental health disorders!!! I said "Really? I thought that could only happen with brain injury?" She said "Absolutely typical." grrrrrr

Hurray on your dd's progress! Thank you for defying any "jinx" and posting positive gains. We all have to remember that even though our foe is microscopic, it is abundant and powerful. Everytime we share our successful battles (as well as setbacks), we collectively move forward in winning this war.

Dr. K will say "no" regular schedule/regular activity..... but we did go in May and he said "if there is such thing as perfect time for ivig, this would be it." Maybe he meant healing time before the demands of school, but I think he meant time to heal before strep season and classroom germs galore. That being said, one can get sick anytime, anywhere; he doesn't want these kids in a bubble or their already stressed-out parents worrying too much about things they really can't completely control. But if you know folks are sick, stay away from them! I kept my dd10 home right afterwards, but it was mostly bcs she would have been returning to final exams; she didn't need that stress, her teacher didn't need it and I certainly didn't either!!! There is a post on here somewhere that talks about the ideal time for ivig and there was debate. Some felt the fall would be a good time if ivig is supposed to "retrain" the system, it should be challenged. But I think more took give the immune system 'time to heal' angle.

What is tegaderm, and what is versed? thanks (sorry if it is obvious) Yeah, so obvious I had to look both up!! Tegaderm is a type of bandage, but I used the SaranWrap idea-which the girls got a kick out of Versed is a med that may be like a mild valium? Ok, how bad is this... when I read "versed" I thought it was the name of the lab that help those with special needs!

Mission Completed!!! The EMLA worked great; they loved the saranwrap. Quest Diagnostics.... the state of customer service these days! I feel like such an old lady saying that, but honestly WHY have online appointments if you aren't going to honor them??? I understand everyone deserves to eat lunch in peace (NOTE: 3:15-4:00 must be an unofficial lunch hour there!) but don't make those times available for appts. then!!! We had 3:30 and 3:45 appts (I changed the appts online to allow for the EMLA to take effect), got there at 3:20 with NOBODY in the waiting room and had to wait until 4pm, then full waiting room. I know I should have complained, but who wants to do that before those same folks poke your kids?

That is a sin! Some folks are just not cut out for the service industry and should be in front of computers...where they can be grouchy at a monitor that isn't depending on them! You all really pulled through! The doc gets in at 1pm, so we're off and then to the pharmacy!

Hi there, I think you are in good hands with a great doc. I don't think you blew it. The reason you do the steroid trial is to verify the autoimmunity connection. The steroid temporarily shuts down the immune system, so I think you'll find most kids represented here were on abx while doing the steroid trial or risk majorly exposing their child. In a way, you're right. You are looking for a change, a positive improvement that verifies the symptoms that have improved were aggravated by the immune response just halted by the steroids. I think you are fine. I suppose there is a possibility if your child has a bad reaction to the abx, then you might doubt you "missed" the improvement. Hopefully, everything will go smoothly. best wishes!

I spoke to Dr K recently and he said he will be there. He told me there will be a big announcement while he is in Washington. Stay tuned. Well, I think you just got nominated to tote your laptop to the conference and post that ASAP!!!

My eyes are really really dark so it's pretty difficult to see my pupils in photos, but here are two. The first is from last March, about a week before I had my first cataplectic, sleep paralysis, & depersonalization episodes. (I'm on the left) The second is from November, when my Narcoleptic symptoms were at their absolute worst. Staying home from school multiple times a week because I couldn't wake up & passing out in class when I did go. My pupils have always been pretty big.. This actually makes a lot of sense now. http://sphotos.ak.fbcdn.net/hphotos-ak-snc...7_1102633_n.jpg http://sphotos.ak.fbcdn.net/hphotos-ak-snc...5_5095052_n.jpg _______________________________________________________________ Quick edit. Just read the post about the "chronic" girl. When exactly does P.A.N.D.A.S. become "chronic"? For my dd10, this probably began very young, around 2 y.o. Depending on the symptoms the child exhibits, it can be very difficult to distinguish in this early onset population. But looking back, we remember normal times interrupted with "periods of disequilibrium" until she was 5. She had late onset hyperactivity at 6. February of first grade, she was 7, was when myco-p piled onto the scene and after that, she became "chronic" which means there were no more identifiable normal or better periods of time; just bad and really bad. Dr. T has a theory of toll-like receptors becoming overloaded as each infection piles on, that is one line of thinking. By the time she was 7, that was after 5 years of untreated pandas (bcs we had no idea, she like you is asymptomatic to strep.) Fortunately, having had untreated pandas for over 8 years does not appear to be impeding her recovery now; she thus far has responded very well to ivig. There are definitely other children whose parents post who exhibit chronic pandas symptoms. Based on the book, it would seem Sammy was chronic from his onset (10), I think?

Thank you for the suggestions! I'm going to ask their doctor for the EMLA script when I pick up the lab orders and then get the bandage while they fill it. Maybe between that and bribing...the drama will be less; at least I can hope! You all are the best!

I have to take both dd10 and dd7 for blood work tomorrow afternoon. Neither will be thrilled, but dd7 threw an absolute fit last time! It took 3 of us to barely hold down a 50lb 7 y.o. and all in the zip code have permanent hearing loss! Any suggestions? I'm desperate and I have to take them solo. I made appt at 2pm thinking the place might be empty. I don't think bribing will help. I just wish there was something I could give her to calm her down ahead of time? Just buck-up, right?

I suspect the "highly intellligent" child and "highly educated" parent describes the current PANDAS phenotype because we are more likely to notice changes in children with higher intellect and because parents with higher education are more likely to search the internet and try to find the answers for their child. My suspicion is that, one day - when we are really able to test for PANDAS- we will see many children from a wide variety of cognitive levels and a wide variety of socioeconomic backgrounds who have PANDAS. ... just my suspicion here Certainly possible! Do you think the estimated 5% of population will hold true?

I think many kids get dilated pupils when in an episode, but my daughter was chronic so hers were like that all the time. We estimate she had pandas 8 years before treatment. Post ivig, her eyes are a beautiful, normal hazel

JAG - i guess that does make sense that the antibodies could just do their job correctly and attack the strep -- then my head starts to spin. those descriptions are of the involvement of the frontal lobe and troublesome with injury. i meant it reads like a list of my son's troubles. does anyone know if and why it's generally the basal ganglia that we talk about? have other areas been studied also as being affected by the antineural antibodies? the diffuse impairment issue -- i've always wondered how the incident of "giftedness" fits in. dr t seems to contend it's that the child may be of higher educated/intelligent parents who may notice and seek treatment and therefore the child may be inherently more intellgent than an average child. i seem to think it's the child. i wonder if the swelling of certain areas of the brain not only influence troublesome behaviors put also engage other areas that result in higher brain functioning of certain skills. I asked Dr. K about the intelligence issue from a different angle. I wanted to know how he could describe the phenotype of a pandas child as an infant prior to them having had the initial episode. He referred me to his single light switch; one wire in, one wire out; it gets overheated but no problems. Now he said imagine a panel with 500 switches, all those wires going in and out; that gets overheated and BIG problems because there are so many connections. I think he hypothesizes that highly intelligent children are genetically predisposed because they have many more neuronal connections to get overheated, crossed and catastrophe. So, when I wanted to know how he knew my child was fussy, intense, difficult to get to sleep, not particularly cuddly; that is a phenotype of highly intelligent infants.

I had never thought about the basal ganglia putting pressure on other areas... that makes sense. I wonder how much swelling there is and if it could do that... Don't have a sense for that...how much quest. The inside of the skull is full of boney protrusions that the brain does not like coming into contact with in closed-head injury... I don't have a sense for the boundaries or limits of this pandas inflammation. Isn't that supposed to be what the dilated pupils are indicative of? I wonder if dilated pupils are a sign in other brain assaults resulting in swelling? CVA? TBI? I thought I remembered reading Buster describe basal ganglia as a giant ball of rubber bands that when swollen shift a little out of place causing all sorts of issues... Okay, pupil dilation can be the result of illicit drugs/overdose, brain injury, brain tumor, stroke, amphetamine intoxication, & side effect to certain medications... Great company for PANDAS, huh?

I had never thought about the basal ganglia putting pressure on other areas... that makes sense. I wonder how much swelling there is and if it could do that... Don't have a sense for that...how much quest. The inside of the skull is full of boney protrusions that the brain does not like coming into contact with in closed-head injury... I don't have a sense for the boundaries or limits of this pandas inflammation. Isn't that supposed to be what the dilated pupils are indicative of? I wonder if dilated pupils are a sign in other brain assaults resulting in swelling? CVA? TBI? I thought I remembered reading Buster describe basal ganglia as a giant ball of rubber bands that when swollen shift a little out of place causing all sorts of issues...

I have no idea either...just some thoughts to throw out there. It is these faulty anti-neuronal antibodies that are attacking the brain, yes? Not the strep antibodies measured by ASO or DNAse B. If it were "real" strep antibodies getting past the BBB and there was strep there... they could just do their job, right? But these anti-neuronal antibodies have been tricked by ol' elusive strep that is molecularly mimicking brain tissue and saying "ha-ha, you think you're gonna get rid of us, but we've disguised ourselves to look like your own brain and you're attacking the wrong thing The areas of the brain and inflammation question is one I have been interested in also. Perhaps, since basal ganglia is more interior, when really swollen for a prolonged period of time, it begins to put diffuse pressure to the exterior portions of the cortex? motor function, problem solving, spontaneity, initiation, judgement, impulse control, social behavior, flexibility, problem solving, perseverating, non-compliance with rules, emotional liability, immature behavior, dramatic change in social behavior. that right there describes my son's issues better than ocd ever has. Sorry-I have figured out the little quotation action yet. This sounds like diffuse impairment to me and my dd10 too much more so than OCD per se, but still many "stuck" behaviors. I wonder if these types of behaviors belong more to the kiddos who are chronic or who have had PANDAS for years undiagnosed?? Any thoughts?