JAG10

My dd10 can't, CAN'T keep her hands still or most of her body (she often looks like she is doing break dancing moves) but especially her hands. This ties into her worst OCD symptom-picking! In the winter and spring, she picks at her fingers and toes-nails and cuticles; summer and fall she starts with mosquito bites that she can't stop scratching that turn into a wound that she can't stop picking. She's ulcerated several (one ER thought she might need a skin graph on her shin) and has scars all over her legs and arms. If there is anything that has made us close to taking her to a psych hospital, it's the picking she can't stop! You name it, we've tried it to get her to stop including long sleeves and sweatpants that we bound with masking tape at the ends. Lately, she's been rubbing her forehead with her fingertips, feeling for blemishes. It's ironic that with the abx the past two months, some acne has surfaced near her hairline on her forehead. My husband had bad acne when he was young and I'm so nervous about getting this all under control before puberty really hits and she scars up her whole face!

I think it depends on what the prescription is for? Antibiotics don't matter, but I think if it's a "controlled substance" like stimulants, pain meds or steroids, the doc needs to be licensed in the state where the script is filled?

I also wonder about the little ones with the chronic ear infections.... I wonder how many get swabbed for strep? They're sick, unlikely to be cooperative, the ped is going to put them on abx anyway, so don't you think many docs don't bother? I feel so guilty my girls were in daycare!

This is a great poll!!! I think when your child's symptoms begin in pre-school, it is so hard to tell. My d had a rock obsession very young, couldn't pass by a rock without picking it up, rocks in her pockets, rocks in our cars, rocks in the bathtub, ect. So, what did we do? We tried to make it normal. We made a rock garden right outside our door to at least try to keep some of them outside. What would a pedi say? Watch and wait... lots of little kids like rocks... And just like the PANDAS go-to docs describe, things get a little better and the baseline gets moved a nudge more away from normal. She's 10 and I will still find rocks in the washing machine or backpack on occassion. I can recall identifying a point in time where the symptoms became much worse, but there were plenty of symptoms before that week that we had already started medicating. Did something change? Is it the meds? (Turns out this was a couple weeks after she probably had myco-p.) I had heard of PANDAS before, but the emphasis on "sudden onset", overnight from normalcy to totally nuts, made me say nope. How about this question... do children with non-PANDAS OCD exhibit behaviors in pre-school? I thought the onset of "regular" OCD was 10, not 3?

Dawn, WOW!!!!!!!!!!!!!! Did the docs make any comment about the ASO remaining constant for all of you but DNase-b skyrocketing? Does that mean anything specifically?? Dear Worried Dad & All-- We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a prize!!! Our PANDAS son started spiraling 2 1/2 months post IVIG after encouraging improvement. We postponed his second one scheduled for this week, untill we unravel this. Our dd15 was dxed by Dr, K in Dec when symptoms of adol PANDAS really came to a head. He put her on HD Augmentin. Total abx for about 6 weeks. Symptoms started creeping & became apparent that "we're backkkk!!" Dr. K said run the titers on her. I said do the whole family. WEeee! (These were run at Mayo) DS11 pandas IVIG oct09 hd Augmentin since then pre IVIG 780/1360 post IVIG 2 1/2mo 378/580 5 1/2mo post IVIG 378/5440!! DD15 adol pandas dx dec 09 6 weeks abx dec09 752/5400 3/09 752/7800 dd13 dec 09 neg/177 3/09 neg/960 dh dec09 189/1920 3/09 189/7860 myself dec09 756/1920 3/09 752/5440 We are at a loss. Our GP has a call into some specialists. Not sure what will be next. We were all on Augmentin HD for a month in Dec. Dr. K seemed to think that would do it. Not sure of his thoughts now. He's not saying much! I think Dr. K has had some situations like Worried Dad and ours recently. I hope something is being gleaned. In both instances we have had to push for titer checks in teh absence of positive cultures and we had an IVIG probably fail because we returned our kid to a strep factory. Dawn PS--No, I didn't miss a decimal point in those numbers. You are welcome to throw out ideas, b/c we certainly are baffling the docs. I've hesitated posting this, thinking you all would think I was nuts!!!

It is the maximum amount out of our pocket, but I'm assuming that is only for approved and covered procedures. For example, our policy does not cover fertility treatments or plastic surgery, so if we chose those treatments, the insurance would not kick-in after we pass our maximum. I guess what I'm wondering about is that the insurance company cannot contain costs by what they deem to be reasonable reimbursement once you pass your maximum, so the only other option, for them, is to deny the coverage of the procedure altogether as not being standard care of treatment.

Does anyone have experience with a policy that has an "out of pocket" maximum cap for the year? We have a BCBS PPO, Personal CHoice and our "out of pocket" maximum is $2000/yr for an individual and $4K for the family. I guess I'm nervous procedures would be totally denied because if they are approved, then everything over $2000 must be covered, not what they deem "reasonable". Does anyone have any experience with this? Sounds like a good thing except that pesky "pre-certification" part!

LLM, I've seen "canary" reaction posted a few times. Can you please explain what that means exactly? Thanks!

dalle tue labbra alle orecchie di Dio From your lips to God's ears! (in Italian, of course ) I just meant the jetlag between the two is exhausting. We cannot grieve and then accept because that is not the journey intended for our kids. Each of us... we are so brave, committed and tenacious.

So many great ideas! What an amazing group of folks! One of the aspects of PANDAS that is exhausting is. ironically, its hopefulness. I mean, if our children became totally debilitated and we knew that was the way it would always be, we may be devastated, grieve the child we thought they were to become, but eventually grow to accept. Some of you may be familiar with the Welcome to Holland poem. But with PANDAS, you intermittently get to see that child you thought they would become, the static clears and you see them and then lightening comes and brings back the static. So, we remain on the exhausting mission of hope that we can finally be rid of the static. "Welcome to Holland" By Emily Perl Kingsley, 1987. All rights reserved. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now? Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-version of OCD. This is my child's health, happiness and well-being, I know it is crucially important, but I have to admit; I'm having difficulty getting it out of my head! And I work with school-aged special education children-I'm seeing it all over the place! I'm smart and mature enough to get through work (although that is where I'm typing from right now, shhh) and run my household, ect., but I am clearly preoccupied by this disease and getting my kid the right help. Thank God strep et. al does not throw me into complete dysfunction! I have put myself on a behavior plan and maybe you can to. A great book (NOT about PANDAS) can be a wonderful distraction. Perhaps others can suggest a real page-turner they have read lately? Limiting your "research" time and, yes, time on the forum will help break the cycle, make you happier and help "wait" time go by more quickly. Pick a project around the house you've been meaning to get done, say organizing photo albums, clothing or your "junk/storage" room. Whenever you notice yourself drifting toward the internet, research; redirect yourself to your "go to" project. Limit the number of times you are going to let yourself talk to your spouse, family or friends about PANDAS per day and stick to it. I don't want to offend anyone, but I suspect many of us have a little of our own mild OCD tendencies we've utilized on our children's behalf to not take no for an answer and persist on getting them well; but the flip side of this trait we must actively manage and not let life pass us by while we were busy waiting. We want all the kiddos to get well and healthy. We want peace and some normalcy in our families' lives. Does anyone else have suggestions, strategies, ect. they have utilized to obtain some balance and keep all of this in check?

Momto2pandas, I am a SLP and have always been keenly aware of my dd10's changes in fluency and linguistic output. Before we were recently made aware of the PANDAS connection, we were on the psychiatric med merry-go-round for 4 years. She usually had a positive response to SSRIs that would quickly fade as well as result in behavioral activation. One thing I would always notice on the initial positive side would be her improvement in linguistic fluency, word retrieval and vocabulary usage (which duh, helps socially). Similarly, so went the handwriting, so went dd10. You can look at her assignment copybook and see the patterns of fluxuation in her handwriting that matched how she was functioning at that time. Since on to PANDAS and abx, we have seen similar improvements and ups & downs in her language and handwriting. I viewed these changes as her manifestation of cognitive static, but isn't it interesting that these symptoms (albeit temporarily) improved with SSRIs (not stimulants or mood stabilizers) and abx. similarly to OCD. The psychiatrists would always look at me funny when I would describe these types of improvements with SSRIs or indicators of decline when they stopped working. Jill

She has not done steroids; just about 3 weeks of 250mg zith and now 12 days biaxin xl. It could be due to her weight; I think the child's dose for biaxin xl for her weight should be 550mg and she's taking 500mg, but when it only comes in 500 mg increments... It should not be so hard, but I consider us very lucky to even be pursuing this road since she is asymptomatic and it was a open-minded psychiatrist to point us in this direction... she couldn't treat her, but that's okay, we are grateful and can find the help she needs.

Hi EAMOM, We were one of the 3 that switched from zith to just biaxin xl with a solidly positive result.... for the first 3-7 days. Since the poll (no more polls for me-kiss of death), next 4 days backslide and we are on day 12. Doc mentioned if backslide continues one more day, may add Aug. to the mix. My dd10 weighs about 80lbs so she's right on the cusp btn the 500mg and 1000mg; can't cut one in half bcs of the extended release. Also, something about the Aug/Biaxin mix might help competing carrier of strep and myco-p. JAG

Our dd10 used ssri's (zoloft, prozac, celexa, st. john's wart) for 4 years. We found that they 1) resulted in behavioral activation (intoxicated, hyperactive, mania-like behavior that some psychs will say is early bipolar, but goes away when the ssri is stopped, so not bipolar) which we used stimulants to try to control 2) didn't work the way they expected them to in that they are supposed to take 4-8 weeks for full effect and with my dd we would see a marked improvement immediately- within a day or two, it would last awhile and then it would eventually (sometimes weeks, sometimes a 1-2 months) stop working. We could never get a consistant, lasting response with ssri's even if we were willing to continue to use stimulants to supress the behavioral activation the ssri's caused. Interestingly, I read on another post parents debating OCD vs ADHD symptoms. My dd always had a more beneficial initial response to ssri's than stimulants which is why I think her internal preoccupation/inattention is OCD-related rather than ADHD. We are not doing ssri's anymore. They do not manage the problem effectively.

Fixit, My dd is also 10 and has been on the Biaxin XL 7 days, 500mg. She is definitely improving, i'd say 3 steps forward, one step back fashion. She has remarked about feeling pressure in her eyes too and I've noticed her rubbing them. I'm just making an informed estimate at this time, but I think my dd started with strep from recurring ear infections very young, toddlerhood. Looking back, I believe the myco-p may have piled-on winter 07 (long, persistent cough at that time) with a marked downturn in behaviors and function the second week of 3/07. As far as the lyme 41 band, I have no idea- only pulled one tick off her ever, sent it (the offending tick) to that Igenex lab at the time and tick was negative for lyme. Perhaps it will be prudent to further investigate the lyme aspect, but her symptoms are all neuro. Back to the myco-p; in first grade, this same winter 07 timeframe, dd would comment about seeing black spots and I've read other parents post similar remarks about this symptom. My dd says she remembers seeing those black spots, but doesn't anymore. At this time, she also started having great difficult tracking in reading. Could read lists of words no problem, but great difficulty with horizontal tracking. She does feeling the pressure/pain at times. I think there is some ocular connection w/myco-p. We have only been pursuing abx since the beginning of Feb. First, zith with some positive changes, then biaxin xl with the discovery by labs of further offending infections. Prior to recently, it was all psych meds the previous 4 years which never yielded consistent, positive results. Often her response would start out positive much quicker than expected, and then fade back to chaos. This isn't scientific, but I think it was her body's way of telling us- NO, this still isn't right, keep looking! And so goes the saga so many of us have experienced; Taking our children with pyschiatric symptoms to doctors complaining nothing is working the way it is supposed to, sounding frustrated and desperate....and how have many of these doctors responded??? Apples...trees... we must be "crazy" too, maybe just a little better at hiding it than our kids. At this point, I'm not wasting much time trying to convince her previous doctors of PAND (as, m, l, ...), my daughter have already had the majority of her childhood negatively impacted by this. I'm seeking out those who are successfully working the problem. I wish to one day take my healthy dd back to her previous docs in hopes to help open their eyes for future patients.

What would be the impact on the incidence in the general population to have two siblings or family members with 2 or 3 of these co-infections?

WOM, As a SLP, I serve on many student's IEP teams and his workload should and can absolutely be adjusted. Perhaps you should consider obtaining an advocate if the school is not accommodating your son. Let them do the lion's share of the fighting with the school district, you need to save your energy fighting for his health. Your District could also send someone out to your home to work with him, if you think that would do more help than harm. Most of my experience is at the elem. level, but I do work 1.5 days at our middle school. If you look within your Procedural Safeguards Notice, which they are required to give you at each IEP mtg, there are agencies listed within that can help you advocate for your son's education if you feel the school district is not working with you in your son's best interest.

She describes it as getting "stuck" looking at something also, but she has that glazed-over look rather than looking with intent, if that makes sense. She does not do this mid-sentence or action. A verbal prompt does not usually get her to stop right away.

Parents, I was speaking with doc T about this intense staring my dd10 has been doing since she was 5. She's had two EEGs since then to rule out absence seizures (both negative). She stares with that glazed-over look like she's internally preoccupied rather than actually looking at anything. I think it might be OCD related because the staring has subsided in the past with SSRIs (which eventually would ultimately fail and result in behavioral activation). She can sometimes converse during these staring spells that look like daydreaming, but they can last for a few minutes. I realize everyone can get into a comfortable stare now and then, but this is notably out of the norm in frequency and duration. So, we were curious if any of the other children were exhibiting this behavior?

Can someone tell me what is PID in box 23?

I was saying that of the 400 students in my elementary school, 4 have a dx of TS. All four of those students happen to be white and male; the school is approximately 1/3 white, 1/3 asian, 1/3 african american boys and girls. Of the 4 boys two of them are related. 4/400 is high; we've had a faculty in-service on TS and this is why we are having a special assembly for the students as well. You have to keep in mind the specific sample I'm referring to is all school-aged children which would make the incidence rise compared to the US population. Jules had quoted 1:100 of school children in the UK which is the same as my particular school.

Incidence rates vary to a great degree, from 1:100 to 1:1000. For what it's worth, I work in an elementary school of 400 K-4 students and we have 4 dx w/TS. A representative from TS Assoc is coming to speak with our 3rd and 4th grades this week. All four are white and male although white males only comprise 15% of the student body.

I agree with you...we really don't know the true numbers of children afflicted with this...Another thing that Dr. K said in his radio interview on Autism One was that the mothers of PANDAS children have non-interfering obsessive tendencies...describes me to a T--although my DH doesn't think my obsessions are non-interfering...LOL...however, I think Dr K. has observerd this because it is this type of personality trait that is not going to let up until we find out what is wrong with our children! DITTO! Every intention at mass, candle I blow out, penny in a wishing well... If I could spend 24 hours on an island with anyone dead or alive who would it be? Without a moment of hesitation, the doc that can help my kid get and stay well.

I like acronym games, but don't have the medical chops for this one. How about from a parent's point of view... PANDA BARE Pediatric Autoimmune Neuropsychiatric Disorders from Abundant Bothersome Antibodies Ruining Everything