JAG10

What I meant was mild and PANDAS are a contradiction if you hold faithful to Swedo's criteria and not the larger net those of us who live this cast.

Good point! Neither of mine show classic symptoms. For my older one, I thought it may be due to the fact she had a T & A at 5 y.o, but younger sister still has her tonsils and still no typical symptoms. Can you think of anything I could do to make the blood draw a less traumatic experience? That is what really is making me hesitate.

Thank you, EAMom. I have the same suspicions of my dd6, she'll be 7 next month. Similar observations, some anxiety/clinginess, some IBS-like complaints, some bathroom habit issues; but very bright, social and functional. Dr. T ran labs on her; her ASO=231, DNAse-B=960, equivocal myco-p; NO history of strep or myco-p, in fact, she hasn't been to her pediatrician for anything but her annual well-check in the past 3 years! So, her labs were similar to my full-blown dd10's, only all less severe. I was thinking about running Cunningham's test on dd6, but one of the HIGHEST displays of anxiety I've EVER seen out of her was during the blood draw for the above mentioned labs- it was over the top, in the middle of the afternoon and knocked her out so she didn't wake up until the next morning!! Diana had posted in response to my question about IVIG studies that Swedo has put together a study for response to IVIG that is being reviewed this summer, but it will only be for those with "initial onset." I'm wondering if (God forbid) our younger ones have the WHAM, if they would be considered candidates? My older one had her big increase at 7:3. So, there is this annoying little voice in my head saying "tick-tock,tick-tock." We tested our younger dd this past fall when she was 6.5 years. I refer to her as "my (hopefully) non-pandas child." I suspect she has "mild" PANDAS. She does have episodes of anxiety (worries about stuff, went through a phase where I had to make sure all the doors were locked at night, went through 1 mo. where she wouldn't eat meat, some emotional stuff., etc). So far, like you say, nothing is "WHAM" or definitive enough to get long term abs. Her CaM kinase ll came back as 130 (lower PANDAS range). We're watching her closely...

I'm wondering if anyone has had the Cunningham test on a younger sibling with "mild" PANDAS symptoms, but that child has not had THE sudden, debilitating explosion of symptoms yet prior to the 1st time tested? I'm asking about younger siblings or cousins bcs I can't imagine someone else being so familiar that they would have this done or even know what it is. It seems like mild and pandas would be a contradiction in terms, but if you've had an older, full-blown PANDAS kid, perhaps you can see the writing on the wall with younger ones or cousins that you know are already genetically predisposed, but have not had that initial WHAM episode. If anyone fits this could you share the results?

Kelly or Vickie, Do the rules say anything about recruiting email info? So if you had like a sponsor sheet where other folks agreed to give you their email and let you use their name to vote for PANDAS, is that against the rules, if you help them out like that? I know a lot of people I've talked to are supportive, but it's hard for them to remember every single day. I wonder if that is what has been meant by "sending 15 votes your way" and comments as such?

We're 34th!!!! We're doing something right!!!!

Kelly- I'm starting to think I'm not sneaky enough for this game! Why would PAWS Michigan and United Voice be voting for each other when they are both in the same 50K category??? Are they just leaving comments? Or actually voting? Until yesterday, I thought you had to actually vote for a cause before you could leave a comment with your name vs anonymous. Vickie determined that wasn't the case, it's all honor system..... unless there is some info somewhere nobody has stumbled upon yet? Honor system and internet sounds like cats and dogs. But, we have moved up some...

Maybe it's the parent in me, but I just love those Whitman Middle School (WMS) kids working so hard to get a new science lab!!!

Okay, I edited the original post to add JETT in case folks don't look all the way through the thread. Is there anyway to see the tally of votes? Or just the ranking? I see someone can post a comment anonymously, but if their name is attached to it, does that mean they definitely voted for us?

WOM- I think you are right. I think what Faith is saying is that if u cannot track that pattern of positive strep swab- behaviors skyrocket for weeks to months- then begin to improve~several times; to go along with your Cunningham test and whatever other evidence you have, at this time the high CamK score does not bypass all or any of that other criteria and make the child PANDAS. Swedo made the criteria for PANDAS, so until she changes/expands/amends it, that's what it is. And it's narrow if your child did not get typical strep throat symptoms or also got ear infections so why bother swabbing or got strep some place other than their throat or started when they were really little. Doesn't mean a pandas doc with lots of experience can't determine that your child likely fits the profile of a pandas child based on the evidence you have or that their symptoms won't remitt with the treatments identified for PANDAS.

So Faith, are you saying that Dr. Cunningham's test cannot definitely be interpretted at this time to measure the activation caused only by strep as opposed to other infectious triggers BUT it can differentiate (by being "in the range") between infectious caused neuropsychiatric illness and NON-infectious caused neuropsych illness?

I'm confused.....a lot of my posts begin with this phrase I thought Dr. Cunningham's test did NOT rise with "typical" OCD, but did with PANDAS and SC. I thought that was the whole point?

WE BROKE INTO THE 30's WEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!

Let's add Whitman Middle School (WMS) to the list for the 25K group. They've been sending us a lot of votes and it's for their science lab....future PANDAS scientists!

BTW- JAG are my initials... if I had 10 jags in the driveway, I'd write her the $50K check myself!!!

The first doc that pointed us in the PANDAS direction for my dd10 was Dr. Josephine Elia at CHOP (PA). When she discussed possible treatment options, there were two that were opposite ends of the spectrum: -Very conservative, short course of Amoxicillan -plasmapheresis She described plasmapheresis as the course for very severe (hospitalization or anorexia) cases that were very acute onset (like within weeks-couple months.) Ironically, it takes you at least 8-12 months to get an appointment with her at CHOP, so I'm not really sure how that works without some kind of inside baseball going on. FYI-Elia is a psychiatrist

It takes a couple minutes to spread your votes around and comment, but when you look down our comments you can see it really pays off. THESE are the folks that will remember to vote everyday, so lets KEEP VOTING AND COMMENTING to keep their loyalty!

It seems this is in full swing across the contest, so the more people we can get to take advantage of it the better we will do! Just some thoughts... Make sure you add a comment to let those in the 5K, 25K, and 250K contests know you are from PANDAS and that you will come back daily with your vote, please do the same Maybe we can consider picking a couple coordinated times throughout the day? It seems to draw more attention when the comments are one right after another from one group. Only pick 9 (you have to save a vote for us) and NONE in the 50K category Here are some suggestions of those that have recipricated votes for us; feel free to add 5K- Camp Out Cancer, Ride MS, Ride 192, Kids with cancer: Bethany Berg 25K- SMA, WMS-Whitman Middle School 250K- SMA, SKY U, MRA, SMILE Autism, JETT, Synergy The 25K category is a little light, maybe someone has some more suggestions? MAKE SURE TO ADD A COMMENT- Charlie and I have been putting something like: ANOTHER VOTE FROM PANDAS (50K) We'll be back daily and sending votes your way. Please do the same for PANDAS research. Kids in crisis, not bears! Anything else???

Thanks Vickie! Charlie and I had to vote for the Going for Ten Thousand! Our father had MS and we also have ridden the City to Shore MS150 bike tour. Let's hope they can appreciate the autoimmune connection! Jill

Any coordinated suggestions for the 5K category, TEAM PANDAS?

I hope you don't mind if I pile on here... Would it be unusual for a child to have the neuro signs of yeast (hyper, goofy. cog fog), but no physical symptoms? I would have guested so, but dd also has the neuro signs of strep with no physical symptoms so who knows!

GREAT suggestion Wayne's your guy! http://www.ncdoi.com/commissioner.asp

Buster, Are you aware of any significance in these extremely high Anti-DNaseB titers on some in this community? I think it was Dawn's family where some had titers in the 3000-5000 range when measuresd at Mayo? Also, do you know if Dr. Cummingham looked for incidence of correlation btn CamKII and ASO and/or Anti DNaseB? Could it be that some people have a high co-production rate of these antibodies and perhaps there is a common thread to their symptomology versus PANDAS w/o titer rise, but positive swab? Are they looking at patterns/trends between what biomeasurements currently exist and symptoms, age of onset, response to treatment? I realize there is a difference between statistical significance and "trends", just wondering if anyone is pooling all the available data and looking for patterns. I know, lots and lots of questions, more research needed for answers.

It worked with his work email. You don't have to go activate it through an email link they send you, so it wasn't a problem. Thanks!

Kelly, You can't use the same email address to register two different people, right? We tried to register my husband and were flashed a message that said he was already registered even though the name, birthday and password were all different. I guess we could try his work email though it will get stuck in his company's spam filter. Jill