JAG10

Hmm, the body and mind in harmony would work, but you've got to respect the microbe! There's got to be some celebrity out there with personal experience with this cursed condition!

I was reading this post and it got me to thinking about Tom Cruise and his couch jumping..... didn't he get himself in a whole heap of trouble for questioning the practice of psychiatry as an industry? Didn't he question the idea of chemical imbalances in the brain? just being born crazy?? I don't know... the whole biological causes for disease of the mind.... I'm not say psych meds aren't useful to some or anything like that.... but after the journey my family has been through, he just doesn't seem quite as crazy as he did back then. You know.... he's pretty popular..... I bet there's a shot he could be convinced to rehab his reputation by lending his fame to the PANDAS cause....

Oops, my mistake. the (PM) part means send a PM-personal message and you do that by clicking on the username like Johnsmom. Hope that helps.

Oh, Donna... sorry. Good observation about being unable to report strep symptoms. I wonder how many of our kids who are "asymptomatic" were just too young to report or perhaps became too cognitively impaired to report? PM Johnsmom. They are actually in Chicago now as he's scheduled for IVIG tomorrow. He was diagnosed PDD-NOS which Dr. K determined was "junk diagnosis" for him. Click on her name which will take you to her profile, then click send member a message. She can tell you all about it!!! I just bumped up a thread about the OCD conference in DC this July. Some PANDAS docs and some very experienced and intelligent parents will all be speaking and holding Q & As on Friday, July 16. Something to consider since you are nearby; a crash course!

Am I reading the brochure correctly.... one day is $160? Are those attending going solo or bringing their children? I'm near Phila., but could drop the girls off at my mom's in Baltimore....

Ask Dr. K if the handsome Croatian doc on the show ER, Dr. Luca Kovac, was inspired by him, please.

Hi~ My understanding is that the diagnostic criteria for those whose initial onset was under 3 or maybe even 5, is not well distinguished from the over 5 crowd and that is resulting in great disconnect in presentation outside of those doctors who do PANDAS for a living. Even when it does become better defined, it could take quite sometime to scoop all those missed kids into the net. Do you suspect very young onset?

Hopefully, the hard part is behind you. Crossing my fingers she sleeps through tomorrow!

I don't know if you can glean anything from this.... I don't use the term OCD with my dd10. We've talked about how some people have difficulty getting stuck and that can show itself in many different ways. This covers depression in getting stuck feeling sad and not being able to come out of it; anxiety-getting stuck worrying about something and not being able to let it go; holding grudges-getting mad and not being able to let it go; having negative or scary thoughts and not being able to get them out of your mind; continuing bad habits like smoking, drinking, over/under-eating, ect. as well as some more overt signs of OCD. Getting stuck can happen in visible and invisible ways, but basically the gear-shift in our brains isn't switching when it is supposed to and we become stuck doing or thinking something that gets in the way of our happiness. This explanation really helped her understand ADD also in that she couldn't properly shift her attention from one thing to another when she needed to and was frequently out of sync with her classmates. The "stuck" factor is what links many, many of these symptoms together in a general way kids can understand.

My dd10 went untreated for 7-8 years and had 3 normal EEGs (ages 5,7,10) I'm not saying brain damage isn't possible, unfortunately a few parents have sadly experienced this with their children. But, it seems unfair to definitively declare PANDAS causes permanent brain damage without having the research to back that up. We all don't need anymore straws or cliffs!!! I would definitely agree untreated PANDAS can appear similar to brain damage in cognitive decline and loss of skills.

I cannot go into specifics due to HIPPA, but due to my work, I firmly believe this causes permanent brain damage. I work with people with developmental disabilities and have been re reading a LOT of files lately. Not many have very good bloodwork draws in them, but some do and I'm finding interesting numbers in some of people with autism spectrum, ocd and other mental illness Some of the younger individuals HAVE diagnosed pandas. The PANDAS docs I've spoken to have said PANDAS is analogous to a bad sprain that slowly heals and can take several months for full recovery. They specifically said sprain, not break (i.e. lesion or damage). I suppose one may never be completely as good as one originally was pre-sprain, but brain damage is an inflammatory term (no pun intended) that shouldn't be thrown around without any parameters, IMO.

We just jumped from 8th to 6th, all because of me, of course KEEP UP THE GREAT WORK. YOU CAN SEE EVERY VOTE COUNTS, IT'S TIGHT!!!!!

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This is a post by Dr. Trifiletti: http://www.latitudes.org/forums/index.php?...;hl=hyperimmune He breaks PANDAS down into subgroups such as hyperimmune, immune deficient, ect. although I don't know if the characteristics hold true; i.e. are there PANDAS children who are dx immune deficient yet did have elevated titers? Or PANDAS children who had the wacky sky-high titers yet also turned out have broader immune deficiency? (I think) My girls are in the hyperimmune group; crazy high titers and not all that sickly besides the antineuronal antibody faucet that won't turn off.

I didn't want to mention it with all the hoopla on the board, but I had... asylum cure with "cure" upsidedown and backwards last week. I just closed my eyes and prayed from my fingertips to God's ears!

WE'RE UP TO #8 !!!!!!!!!!!!!

So by "appropriately" does that mean they will get a fever and sore throat if they never did before? Otherwise, with no change in behavior, how would you know to give all these asymptomatic of strep kids the 10 day course of abx?

Alright, Kelly- now I'm crazy! You've got me looking up the definition of "cure" (i used to like that band) remediation of, alleviation of, successful treatment of (there goes my idea) Anxiety is no little deal, but only you can be the judge of where he stands. Did it go away with a steroid trial? How does he handle school or sports pressure? Any perfectionism? As I mentioned to you, my dd7 has mild symptoms, anxiety being the main one. The difference is I see her against the backdrop of her older sister, the no-brainer for treatment. Maybe as my older one gets less and less symptomatic, I'll become more and more anxious about the younger one's anxiety I don't think the puberty milestone should make you feel rushed. I can see Dr. T's point about monitoring until/unless there is another episode.

I would agree that successful treatment means that even after the IVIG is long gone from the body, the child's immune response has been altered so that it can now manage (rid the body of) strep with the aid of antibiotics just like everybody else, but I don't think it means the first symptoms of that strep infection will only present as typical fever/sore throat and never neuro-psychiatric; and it sounds like that is what you are looking for in the word cure vs. successful. You want no evidence that PANDAS ever existed in that child. It sounds like your risk/benefit analysis would indicate you should not pursue IVIG with such high percentages. When you read others write that all children deserve to be 100%, these are informal judgements and perceptions. My dd has scars all over her arms and legs from picking at her skin, she will never be 100%-it's unobtainable. Advice? I think you pat yourself on the back that you're a proactive mom armed with the knowledge of exactly what to do if your boys start to decline. I think you look yourself in the mirror and say even though I'm blessed to have boys with minor symptoms, I vigorously work for progress to help kids like those who are hospitalized or home-bound from severe symptoms. I think that if you believe dr. K's use of the word cure is genuinely harming this community, you should respectfully share your thoughts with him in writing on how that word could be misinterpreted from his intended meaning.

These are good, legitimate questions, but likely unobtainable at this point. By cure: You are looking for children, diagnosed with PANDAS, treated with IVIG, followed up by at least a year of abx, then off abx for an extended period of time (years) who despite re-exposure to strep remain assymptomatic of any PANDAS symptoms. These folks could be hard to find via poll for a couple reasons. Some treating docs don't want to take the risk of taking them off abx. (not only bcs of the child's health, but many parents make a huge financial investment they don't want to risk having to repeat) reducing the pool of possible responders significantly. Also, the children you are looking for, by definition, are years post PANDAS symptoms and their parents are probably not on here like those who are problem-solving. Why would they be? Even in caring about the cause, you're not motivated like you are when trying to get your kid healthy; you naturally move on. These kids are all over the map; current age, age at onset, years symptomatic, severity, symptom cluster, immune system status, vaccinations or not, co-existing disabilities, co-existing infections, cognitive status, diet, other medications, siblings; pandas, non-pandas, possible pandas, none. In a poll, all we know is that they are a fruit; we don't know if they're an apple, kiwi, strawberry or pineapple. Is there enough information gathered to draw any conclusions about the cure question? It doesn't seem like it. Aren't there a lot of diseases that have this debate? Are you cured of hepititis or is it just "no longer detectable?" Perhaps cured is a word that is too emotionally charged? If these kids have toll-receptor vulnerability that get overloaded, can you cure that overload but assure overload will never happen again? Maybe some PANDAS kids receptors get overloaded very easily and others not so easily but they came across the right collision of nasty bacteria? Maybe the "assymptomatic with and/or without abx support" will be a more obtainable question for science to answer? If years post IVIG, an assymptomatic child is off abx, becomes exposed to strep, exhibits neuropsych behaviors, then when the infection is treated w/abx is again assymptomatic... what's that? Pretty close to cured?

You gals are so AWESOME!!!!! I feel very good we've held our position this work-week!!! And it appears many of those on our list are improving or hanging tight as well which is also awesome! Happy voters are consistent voters, yes?!!! WOOOWHOOO!!!

The fact that it's hump day and we're holding steady is an accomplishment! KUDOS TO ALL!!! Perhaps we can gain more ground on the weekend again... EVERY VOTE MATTERS! KEEP UP THE FANTASTIC WORK!!

Hi Dawn, Oiye! So he had myco p recently with or without symptoms? Can you get it w/o the long persistent cough? I thought that the IgM doesn't go up after the first time one is exposed? Sorry, I must still be at a bachleors' level

i'm with you on your rant, norcalmom! my son doesn't technically have a pandas diagnosis b/c he's never had an ocd diagnosis. lucky for us, an astute behavioral therapist listened, observed and pulled up pandas. low and behold, high titers, active strep and 100% remission with abx. no one else we were seeking help from was on her wavelength. so far, it hasn't been an issue - but if i need school intervention in the future, will my ped write that diagnosis? i think . . . but am not sure. the criteria for study and diagnosis should be different! You don't need to have OCD to be diagnosed with PANDAS. If you have tics that would be enough. Although, I'm quite sure there are kids with PANDAS that don't have either OCD or tics, but they have ADHD or emotional lability, anxiety, or other comorbid symptoms. Also, a lot of behavior that is actually rooted in "OCD" goes undiagnosed. For example, defiance can be a form of OCD...and our dd's anorexia was vert OCDish. I totally agree! Not being able to shift your attention from one thing to another looks ADHD, but hyperfocus, getting stuck in your thoughts-daydreaming, is on the OC spectrum too.

Best of luck next week Mary! What days are you going? Johnsmom is going next week too.