JAG10

Colleen, Heavy sigh... I suppose it depends on how much energy or will you have to want everyone "on board." My dd had an ENT who was an excellent surgeon and very blunt....he was willing to be the technician to perform her T & A, that's it. She did not have any ongoing ENT issues, we just needed the Bacteria Campground removed from her throat, inches away from her brain. If that's what you need, sounds like you will be okay. Give her the articles and a gentle smile realizing you are helping to lay the ground work for patients that will come years after yours. The orphan illness will either be raised by a village or raise himself!

Ditto on the generic "thank you" Hopefully someone gives these emails consideration

Hi TwinCitiesMom, I think there have been suggested articles floated around for school nurses. You can try searching here or our best friend, Google. There is the whole "a bird in the hand worth two in the bush" argument where you raise awareness but then have no local, in-network docs to refer folks to for help, which gets complicated pretty fast. Saw this was your first post and just wanted to give you a shout out HI Jill

Table 4 is AWESOME and accentuates the point made in the other article about the over-emphasis on OCD and Tics in PANDAS rather than the broader range of associated neuro-psychiatric dysfunction that so frequently accompanies the OCD and Tics in our kids. I was surprised there was not a wider difference in the age of onset.

We should all email Dr. Albow about our kid's stories and see if we can convince him to do an "on air" piece on Fox News....... info@keithablow.com Whatcha think?

YES!!!! Especially for the sound-bite media!!!

"On the other hand, other virulence factors may be responsible for an increase in incidence of strep infections that present with minimal symptoms of pharyngitis (Krause 2002)." Can someone explain this? Why does very infectious result in minimal throat symptoms?

Last week we had some great discussion regarding improvement without remission. So now I'm curious to about your thoughts on Flare (minor symptom increase) vs full-blown Exacerbation. 1-Do you think the peak of the mountain of symptoms triggered is determined by: a) the type of immune system challenge (viral or bacterial or degree/strain of infection?) the innate terrain ( the specific combination of infections your child has already built a response to and the status of their particular immune system) c) the artificial terrain ( where your child happens to be in a particular treatment when specific bug hits) d) the succession of assaults (are infections coming one right after another, not giving your child's system a chance to stand down long enough 2- Do you think slamming down flares with increased abx or steroids prevents the "over the cliff" exacerbation? Or do you think the right trigger at the right time will lead to the inevitable BIG one? 3- Do you think flares in symptoms reflect more the nature of challenge or the status of your child's health? 4- Is anyone who has witnessed this from childhood into puberty.... are you able to appreciate any difference in symptomatic reaction to triggers (flare vs exacerbation) between prepubescent vs. puberty/post-puberty?

Sheila, Please add that donations are tax deductible.....everyone needs help with the taxman!

Me too!!! Thanks, Kara. I didn't even realize that option was on the homepage; I just have the forum in my bookmarks!

It will be interesting if current presence of other infections is deemed a "rule out" in this circumstance.

Nevergiveup, How validating!!! Not to undermine the contributions of others, but when you bring DOCTORS on board, really on board, the cascade of healing and "lives saved" is exponential. And knowing your dad is in our area, I am personally grateful the chorus for belief and treatment is one voice stronger! God bless you! Jill

Mom MD, Have any of the PANDAS docs agreed with you that ASO and/or aDNAseB can rise without having had a recent strep infection? Purely an auto-immune reaction? I think this could be the case, but that is just me speculating. My dd has NEVER swabbed or cultured positive, but runs the sky-high titers like you mention. Titers drop after IVIG, then back up they go... When I ask why doesn't she ever test swab or culture positive, I'm told....they must not be swabbing correctly or we're not timing it correctly....they have no other explanation for this lack of finding.....yet up go the strep titers, so she must have had strep....maybe not.... I know what is coming, so let me say...her sinuses are also perfectly clear, no sign it is "hiding" somewhere else and she's on abx, but they don't help with a virus/cold. This is so frustrating!!!!! These labs are supposed to help us figure out what is going on with our kids, but if they don't mean what they are supposed to mean, then what the flip do we do????? So, what is more reliable...the culture or the blood titers? We've all discussed how once PANDAS is in motion, many different viruses, bacterias, stressors can trigger an exacerbation, but can/does that mean that ASO and/or ADNAseB are also being set into motion even w/o strep? Bottom line, for some of our kids can Exacerbation=increased ASO +/- a-DNAseB even without strep infection?

I had mine removed as an adult....well, 21...sudo-adult It's a long recovery, like 3+ weeks, but if you're lookin to lose 15lbs...... that might not be the worst side effect I can think of..

Very interesting info shared....thank you all so much!!!! Melinda-what were the clinical signs/symptoms that jumped out to your doc as Bartonella?

LLM, When you presented at the OCD conference this summer and then the docs had their PANDAS meeting after, did you get a feeling for whether these docs are pursuing lyme and co-infections in a systematic way? Is the white paper going to be stale before it is even made public???

Do the connections ever end???? My dd10 has the most annoying cowlick...like her reduced awareness isn't enough to make her look disheveled most of the time...she's gotta have hair that always wants to fall in front of her face.... maybe there is a connection.... My father-in-law had MS. I remember asking my mother-in-law a few months ago if she was ever worried his MS could genetically impact their children. She looked at me like I was nuts and said "No, he was just an unlucky person!" I'm not believing in bad luck much anymore.

With the test kit, came a clinical history form. It is not required....It states they are using it for research and development to improve tests. I was wondering if parents were adapting this information any? The form itself is very light for neuro-psych symptoms only... there is one box for neuro-CNS (sleep, memory loss, confusion)...which really doesn't do our kids justice. Then there is another box for Encephalitis __ yes __no __uncertain Then there is the History of Treatment box. Well, the history of failed psych med treatment would take several pages for my girl. Then there is the PANDAS treatment she's tried thus far.... perhaps they only want lyme protocol treatment. Perhaps this form is geared toward adult symptoms rather than kids? Has anyone received a different form more specific for children? Or just provided a separate sheet of info more relevant to their child? Any ideas... Will Igenex send the results to the parents upon request or only the ordering doc? thx-jill

Do you all find yourself not sure of anything anymore??? We talk about the differences between infectious-based OCD and "true" OCD; infectious-based tics and "true" tics....and then some ponder if there is any difference at all... Anyway, interesting find...I'm an SLP and work with kids K-12. I have a very bright, ADHD 10th grader who has stuttered severely since I have known him in 4th grade. In the past few years, he's expressed interest in DAF (delayed auditory feedback) but it is a very expensive device ($5K) Well, IPhone 4 has a DAF app that can be used with a blue-tooth or mic-headset, so I was able to put this together on my phone for under $30...much smaller investment. It brought tears to my eyes to hear him speak...not perfectly, but soooo much more fluently!!! I started wondering if DAF would work on those who have an infectious-based stuttering tic? Might be worth a try for anyone challenged significantly by stuttering.

So glad to hear your update; your post before this one felt so humbling. I hope this isn't offensive, but it appears the term "classic PANDAS" is quickly becoming an oxymoron. Here's hoping the new name...whatever it will be...will somehow encompass all these poor kiddos.

I emailed Igenex this question yesterday.....their reply said "10 business days to process from the day they receive it"

I think it depends on how broadly OCD is defined....if you think of OCD issues as ones with difficulty with the gear shift of the mind....ones who have difficulty shifting focus, difficulty letting things go...many more kiddos would get caught in the OCD net for these broader OCD-like behaviors. They are not as obvious as the hand-washing, evening, locking overt OCD behaviors, but are the same underlying "mental-stuck" behaviors. Then yes, marked increase as they go along with the biggies....ASD and ADD/ADHD.

I know it is a sin with ASHA in my backyard this year, but no, I'm not going. With the days I need to take off for my own kids, I don't want to miss my school kids for convention. I need to keep working full-time to be able to afford the treatments she needs, but it is really taxing mentally to manage. Thank goodness we can come on here and pick each others brains....which doesn't mean I'm swaying in the wind with every post either! I will say this...and I know there are many on here who also work in special education.....the numbers are absolutely skyrocketing year after year after year in ASD, LD, ADHD, ect....waaaaay beyond they incidence rates reported in the literature. Something is changing at an alarming rate....lots of variables to tease apart, but something has taken battle to the brains of the next generation.

Many interesting questions, indeed Amy! I have also wondered... as an SLP working so intimately with these children, near their mouths, them coughing and sneezing on me half the year... what have I been bringing home to my own kids all this time?? I seriously considered wearing a lab coat this year, but it just seems awkward in an elementary setting. I have made an effort to leave my shoes in the garage and change my clothing as soon as I get home.

Amy- I LOL when I read your comment about the applesauce! I've been giving my dd10 her meds in applesauce since she was 6 and have often thought about my old nursing home patients with their applesauce and mashed potatoes!!! If you ever run out of applesauce, whipped cream also does the trick!