JAG10

kmom-Do you mind sharing who your insurer is?

Oh Tracie!! This made my heart sink!!! Our kids are all getting hammered this month!!! I know this time last year was H1N1.... and I remember when we met with doc K in July he specifically said "the end of September into October will be the challenge." Sorry if this is a dumb question, but is there something different about this time of year from the rest of the Fall/Winter? Or is it just the beginning of the rollercoaster?

Mom MD, I agree with this observation and my experience is that many PANDAS docs find this significant too. I know some folks think the height of the titer rise is irrelevant, but for some of our kids, mine included, sky-high antiDNAse B is very telling. I'm am certainly not stirring up the titer rise controversy; no doubt PANDAS/PITAND/SOT exists w/o elevated titers, but for some of our kids it is a reliable gauge of what is going on with their immune system.

Hi dabel, So his IVIG was in Dec 09, he's had 10 months of recovery and this is the first virus he's had in 10 months? Hmm. Well, I'll let you know. We just had a nasty virus run thru our house with dd10 experiencing behavioral setbacks. We tested ASO and a-DNAse B Saturday, so we should find out the results this week. She had IVIG in May, we retested ASO DNAseB, and myco-p in late July: strep titers came down significantly and myco-p doubled. So, I'm interested to see if her strep titers have risen again. Let me get this straight; doc K is saying if a VIRUS can make your child's ASO and DNAseB titers rise than they are an autoimmune measurement, not a strep measurement? Is that possible in some kids???

How can we not love someone who orchestrated Dr. C getting 50K towards research for our kids.......even if she is a smartypants!

I used to think I knew the difference between viruses from bacterial infections, but I don't think I do. I thought viruses run their course, but bacterial infections won't go away without your body getting help from abx. But now, I've read a healthy body can get rid of most bacterial infections too. So, I'm not really sure how you tell the difference between a longer virus and a bacterial infection like myco-p? You don't. Alright, smartypants!!! MayoClinic doesn't make much more distinction than that for us common folk. They actually say we take antibiotics to kill the bacteria, but we've all learned from Buster that is not true... the abx slow down the bacteria so our own immune system can finish them off. But based on overt symptoms, some viruses vs bacterial infections can be difficult to distinguish.

I used to think I knew the difference between viruses from bacterial infections, but I don't think I do. I thought viruses run their course, but bacterial infections won't go away without your body getting help from abx. But now, I've read a healthy body can get rid of most bacterial infections too. So, I'm not really sure how you tell the difference between a longer virus and a bacterial infection like myco-p?

Sorry Fixit, I meant in most people... I'm wondering if that's what I've been fighting the past week and that my kid has been react to.... This time of year is really tough!

Melanie- Is mycroplasma a virus? Worse than a typical cold...some fever, sore throat, coughing, congestion, ect>

Wish there was another way to notify someone their box is full.....hmmm

Wait, so they don't even treat with long term antibiotics? Do they look for underlying infection including non-strep illnesses such as tick borne diseases and mycoplasma, or sinus infections or cysts? Do they do throat cultures and check family members to make sure they're not carriers? Do they check the immune status of these kids? Considering how many PANDAS kids have failed to respond (or had adverse effects, or just continued to spiral downward while well-meaining parents are thinking they are doing "all that can be done") from SSRI's and other psych. drugs, I would disagree with your stance that CHOP's treatment of PANDAS kids is "better than nothing". Antibiotics (+/- a course of steroids) would be "better than nothing". PEX/IVIG would be even better. (Oh, and I'm glad CHOP is treating SC cases, that is great. They should.) When we received our blood work back, Dr. E did not want to prescribe abx. SHe wanted another trial of SSRIs....this would have been like the 10th! She wouldn't consider anything else until we tried CBT across the street at U of Penn. I know there are many who rave about CBT and ERP, my kid was in NO WAY cognitively able to reap benefit from these therapies, she was a mess! After two more weeks passed and dd was getting worse on the ssri, Dr. E's fellow had pity on us and prescribed 250mg Amoxicillin 3x/daily for 10 days. I took the script, but had already made an appointment to see Dr. T who quickly switched her to zith. No, CHOP is not in the practice of prescribing abx, their medical management clinic which Dr. E runs prescribes psych meds. Can someone comment on whether Dr. E was the only CHOP doc there??? Was there a different department...neuro? anybody else?? I certainly hope so.

It's good fortune to have dad to write you scripts when you need them! I'll take that deal! My mom is 70 and I keep begging her to date the urologist that's been hot on her heels for years so I have a back up if need be!!! I guess what I'm saying is this....when you have a "pandas expert" at the big city hospital, everything stops where she stops AND SHE'S VERY, VERY CONSERVATIVE. If nobody claimed to be a published pandas expert, perhaps we parents would have better luck getting some docs of any stripe or color to become educated, measured risk takers for the sake of our children's sanity.

Because with CHOP's prestigious reputation, you can't get anybody in the area to do anything CHOP won't do. It's getting to the point where nobody will treat kids w/o CHOP's blessing first. No abx, no steroids, just psych meds. And when they say severe, they mean hospitalization, overnight for a length of time. My dd picking her skin to the point of ulceration, scars and skin graphs didn't cut it, Taking her to the ER on several occasions didn't count. CHOP deserves kudos in many areas of medicine, but NOT THIS ONE!!!! Many of us who live in this area have the same story. We either drive to MD or NJ or CT or fly to Chicago. The one guy treating at St. Christopher's can't decide if he's going to be bullied by CHOP or not.

IDK, maybe she played dumb. I kind of doubt it because she seemed suspicious of an authentic research study you had to pay to participate in, she said real research isn't run that way.....

CHOP-PEX only if severe enough, sudden enough and brand spanking new diagnosis (I was told within weeks of onset)......of course, who knows how you pull THAT off since it takes 9-12 months to get an appt with their psych pandas "expert" No IVIG that I've heard of there. And, forgive me, but CHOP just isn't a good acronym for any hospital, is it?? One more beef and I'll zip it.... Dr. E is supposed to be the PANDAS expert at CHOP, back in Jan 2010 when I suggested we have my dd participate in Dr. Cunningham's study, she didn't know what that was. Is she CHOP's major player or are you referring to other neuro docs who would never be publically associated with PANDAS?

This thread is depressing. What's happening to us? Some have the secret and some don't? Is this the same group that voted faithfully for 2 months to earn a penny for the Grand Canyon sized research that is really needed? To find out we are really all dealing with the B team and the A team is a big secret you have to stumble upon? I live in the world of CHOP. Every doc in a 90 mile radius bows and curtsies at the alter of CHOP around here....so, if CHOP won't treat your kid, you're SOL or SOT. CHOP said PANDAS for my kid, but she had had it too long, so sorry-here..have some more psych meds that don't work. You think they'll call soon and tell me they've changed course???? This group think was all I had as an alternative to CHOP's conclusion and my kid is significantly better than she was 1 year ago because of it and what I learned; not perfect by any measure, but better. Hopefully more of these top docs will soon find it fashionable to sport their expertise and my child can get a head to toe immunological makeover at one of the nation's leading children's hospitals right in my own backyard.

This is a point that our favorite docs are differing upon... and I was hoping to get some feedback in a concise thread. For those who went with the lower prophylactic dose after X number of weeks post IVIG, you increased the abx to full strength when you saw behavioral slippage that you suspected was induced by a,b,c triggers, yes? You held this course for 10-14 days for suspected infection? What if the child was just "reacting" to someone else...still 10-14 days? Is that to "fool" the t-cells into remaining quiet? Did some of you get to the point where you felt it was such a yo-yo exercise you just ended up keeping your child on full-strength? For those who remained on full strength abx post IVIG, what was your recourse when you observed behavioral slippage in your child? I can understand the full strength keeping bacteria away, but what about all the other triggers? Or does the full strength abx simply keep the t-cells quiet no matter what and you never saw behavioral slippage? Did you sometimes just switch to a different full strength abx?

Good to see you around though......any updates?

Google it...they're around. Amazon, ect.

Absolutely, that makes total sense. She just doesn't get any physical symptoms, so we need to look out for the behavioral ones. This would be much easier if she did...now I'm just trying to look at those around her for physical clues AND her behaviors. When her little sister got strep 5 weeks ago, it took 5 days for her behaviors to show, but we had already increased her abx. Days 5-11 were h@ll, then she pulled out of it. If I hadn't had the clue from my younger one, it may have lasted longer.

A healthy immune system can clear strep w/o abx. I read somewhere that abx only shortens recovery time by a few days. YES...so if you have doctors saying "you need to have a,b,c symptoms X number of days before coming in or before they will treat you, that falls in line with what you just wrote, Peg. Which I guess would be fine if we weren't worried about exposing our kids..... IDK, dr. K just told me to focus on behavioral symptoms in my girl, not physical illness ones if there is no change in behavior. I've never been much of a germaphobe before and I'm having a hard time adjusting

Let me ask this..... In a non-pandas individual, can strep "go away" on its own without antibiotic treatment? Or could you know it is strep because it won't resolve without treatment? Does strep result in the person developing a greenish mucus they cough up eventually? Does viral sore throat do the same thing? I don't know/remember ever having strep throat. But, I had my tonsils removed when I was 21 due to "chronic pharyngitis." I would have thought that the difference is a viral infection simply has to run its course, but a bacterial one the body cannot defeat without the assistance of abx....is that right? I'm home sick today, btw...low grade fever, fatigue, my throat feels a little better, but I also developed some mild congestion so I'm thinking viral.

<br><br>Hey Kelly....do you swab yourself?<br><br>BTW-I always wondered about that picture too<br>

Kristy, Sounds like there is so much to celebrate! I'm sure you know the ups and downs are normal at this point...hang in there! I wanted to ask you a question...you stated the date of your child's sudden onset; 10/6/08....would you say that was a date when all heck broke loose? It sounds like you had seen some symptoms prior to that if your dd8 has only had 3 dry nights her entire life and post IVIG that has improved, yes? Just wanted to know if you are able to identify "concerns" prior to her being 6, but 10/6/08 is when it went from windy to a tornado? My prays her positive outcomes continue to roll in! Jill

Those of you who as adults get strep throat....can you feel a difference between a strep caused sore throat and a viral strep throat? I have a sore throat now and I went to my Walgreens (the NP told me she has another pandas mom she's always swabbing too) to get a strep test. Negative and they sent out a culture. fine. Still no congestion, still hurts to swallow. My T & A are out. Those of you who get both...do you feel anything different? I said to her "It feels like it started on the right side and is moving toward the left." She said that sounds like it could be strep. So viral sore throats don't develop that way? My glands weren't swollen that she could appreciate, I didn't have a fever, but I didn't feel great either. This little investigation with Q & A cost me $95 dollars which I realize is small potatoes through the PANDAS prism, but I thought I'd ask the group that would know: As adults, does strep feel any different than a virus? And, yes, I know both can trigger our kids.