EAMom

how long have PANDAS docs rx'd abs for Mycoplasma? Do they recheck titers after a mo?

Biaxin is supposed to be better for mycoplasma than Azith. There are strains of mycoplasma that are resistant to Azith.

PS it is possible to go back and edit your 1st post to a different font ... It would make if easier for others to read.

Ps didn't anybody ask you? Does ibuprofen help his behavior?

Hi, I agree with the others re not accepting the bipolar diagnosis. I once had a child psychiatrist tell me bipolar (in kids) was a garbage can diagnosis. And did you ever notice that the list of "bipolar symptoms on kids" are all PANDAS symptoms? Hmm. I would also rec doing "the test for Pandas", the Cunningham test. Re the augmentin: so your child is getting 250mg (5ml) once daily? That is too low!!! Augmentin should be given at least 2x daily. My dd took 1000mg 2x daily (Augmentin XR) when she was about 80 pounds. I'm not sure what would be considered a good dose for a 30 pounder, but at the very least it should be TWICE daily. Re your sister... I do wonder about these pandas families that have a hx of mental illness, how much is due to pandas (or some type of infection/autoimmunity).

Are you going to do the Cunningham Test and/or an antibiotic trial? I would also recommend getting current throat cultures on everyone in the family (checking for carriers.)

Many PANDAS kids don't get typical obvious red sore throats when they get strep. Some have no symptoms, only behavior changes, or tics. Others might get a fever, or vomiting. My dd never had a throat swab until she was 7.5 years old. At that point her PANDAS was severe enough to require hospitalization (anorexia, bipolar symptoms). Her titers were normal. We had just learned of PANDAS and demanded a throat culture. The doc's comment was "Gee her throat doesn't look sore." Needless to say, her throat culture was positive. She also had vaginal strep (culture positive). Also her younger sister (asymptomatic) was also positive on a rapid swab (throat). In hindsight, she had likely had previous PANDAS exacerbations (lower grade) which correlated with undiagnosed strep. Unfortunately, all previous illnesses (fever, vomiting, etc) were presumed viral. Nobody had ever bothered to swab her when she was sick. Your child is probably the same...doesn't get a classic sore throat with strep, so they don't swab. In the future, I would demand a throat swab with any fever/vomiting. Also, if there is an increase in tics or behavior issues, I would demand a culture as well. Step 1...I would highly recommend getting everyone in the household currently swabbed for strep. Do the 72 hour culture if the rapid is neg. As an aside...one problem that PANDAS parents face, is getting doctors to do a simple throat swab/trial of antibiotics. It's totally illogical, I have heard of kids having MRI's, CT's scans, spinal taps...expensive and invasive tests. Yet these same docs refuse to do with a simple throat swab. Sigh.

His elevated anti-dnase b means he likely had strep in the past (or possibly, currently). Has he had a recent throat culture? Has he had any known strep infections? Also, is this the only time he's had strep titers drawn? You might want to recheck titers in 8 weeks to see if they are falling.

I agree with dumping the HMO, esp if your kid needs IVIG or PEX down the road. For now, make an apt with Dr. Latimer. Would it be possible to tell a little white lie in the meantime, say your son had a sleep over with a friend that woke up with strep and now he is complaining of headache, etc? To at least get a throat culture? It honestly boggles my mind that these docs will do a MRI ($$$) but not a simple throat culture on these kids. Also, if siblings get strep, I would rec reculturing 3 weeks after the last antibiotic dose to make sure the strep cleared. Two weeks after he was off antibiotics, in March 2012, his sister contracted strep throat. He was not swabbed be because he showed no symptoms. This was during the period that his health was not doing well - major gut issues, etc. Four days after she was dx, he woke up with a pronounced verbal tic (repeating ending sound of words 3-4 times). I think there are some good docs in North Carolina, maybe you could get in while you are waiting to see Dr. L. I think Dr. O'Conner is one? http://www.latitudes.org/forums/index.php?showtopic=9963 Oh good grief...how do I make it so this post isn't double spaced?? :ph34r:

Yikes! Prayers for your son.

Mayzoo, a positive rapid counts as well as a culture as "evidence of strep."

Pandas kids are known to react to viruses as well, it's in Swedo's 1st 50 cases paper. My dd definitely does! "not all symptom exacerbations were preceded by GABHS infections; viral infections or other illnesses could also trigger symptom exacerbations. This is in keeping with the known models of immune responsivityprimary responses are specific (e.g., directed against a particular epitope on the GABHS), while secondary responses are more generalized. Thus, the lack of evidence for a preceding strep infection in a particular episode does not preclude the diagnosis of PANDAS." http://ajp.psychiatryonline.org/Mobile/article.aspx?articleid=172706

Thanks for the update. I'm glad you followed your instincts and your kids are doing better . The VLOG was good too...smart lady.

smartyjones: not sure. But Buster (I think) did ask some people (ugh, don't remember who, Swedo? Kaplan? a while back) if they had ever cut the data to see if there was a difference in boys vs girls with titers on their research and nobody had ever cut the data that way (with PANDAS or non-pandas). So, as far as I know, Buster is the only person that every noticed or looked at sex differences in strep titers. It would be great if we could get a "real" researcher to look at this phenomena! Mayzoo: your dd had positive rapid ( or cultures) as "proof" of strep, that is all you need. Your dd is PANDAS assuming the right symptoms (OCD etc) in association with positive cultures, response to antibiotics, etc. The low ASO/anti-dnaseb are irrelevant. My dd's ASO never got above 30, despite positive cultures and PANDAS severe enough to require hospitalization (anorexia at age 7). 1 year later we did the Cunningham test (when not in an exacerbation) and she tested in the high PANDAS range. Her ASO at that point was in the 16.. A few months later we retested her Cunningham test (after H1N1, just before IVIG) and she was in the high SC range, the highest Dr. Cunningham had ever seen. So, for us as well, strep titers have been irrelevant. There are situations (if your kid is one that makes ASO/anti-dnase b ) where titers can be useful, such as if cultures are neg, and you are looking for SOME evidence of a past or current strep infection. "What I gather from what you are saying EAmom, is that even with almost no strep antibodies present, you still feel that my child would be defined as PANDAS not PANS? Since it is antibodies that are the cause of the issues, I am not sure I get that" ^^^^ASO, anti-dnase B are only 2 types of antibodies (the ones commonly measured) that might be produced by the body in response to strep. They are not the antibodies that causes PANDAS. http://www.latitudes.org/forums/index.php?showtopic=3756 1) Is PANDAS a reaction to elevated ASO or AntiDNAseB titers? The research indicates no. ASO and AntiDNAseB are responses (antibodies) to exotoxins from Group A Beta-Hemolytic Streptococci. PANDAS is thought to be a reaction to another antibody that's created in response to the streptococci. The theory from Cunningham and Kirvan is that there is a monoclonal antibody that is created that targets a particular carbohydrate sequence on the streptococci. This monoclonal antibody is supressed in most people but for some reason it is not supressed in PANDAS kids. and One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

For PANDAS kids, it is CRITICAL to keep strep out of the household. In the future, if family members have strep, be sure to recheck a culture 2-3 weeks after the last antibiotic dose to check if the strep has cleared.

Your dd sounds like a textbook PANDAS case (acute onset correlated with positive culture/strep in household, classic symptoms, response to antibiotics, regression off antibiotics)! Get throat cultures on all family members to make sure there isn't an asymptomatic strep carrier in the household. Many girls don't get an elevated ASO (even with positive cultures): http://www.latitudes.org/forums/index.php?showtopic=9495 "Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness Whereas 54% of boys had elevated ASO or Anti-DNAseB" Note: PANDAS is NOT a reaction to ASO or anti-dnase b (the commonly tested strep titers)! FAQ on PANDAS (recently updated): http://www.latitudes.org/forums/index.php?showtopic=6266 Amoxcillin failure in strep throat http://www.urmc.rochester.edu/news/story/index.cfm?id=981 From P. Mom's visit with Dr. Cunningham (Univ. of Oklahoma) http://www.latitudes.org/forums/index.php?showtopic=9361&page=1 1. Strep titers are in NO way diagnostic of PANDAS. Dr. Cunningham says she "took care of that" at the OC conference. For a PANDAS diagnosis (meaning in relation to strep)... a positive culture OR high strep titers are needed for the diagnosis...however, the child may be tested to late to show either, or, may not mount enough of a response to show strep at all. It really is complicated. 2. Just because strep is not cultured from the throat does not mean that the strep is not elsewhere. Could be in the gut, sinuses....it could be vaginal or perianal. So, negative throat culture does not mean no strep. 3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics. Cunningham Test (which is an actual test for PANDAS) http://www.moleculera.com/ (note: test not yet available in CA) A good handout for you and your doctors: http://www.ocfoundation.org/PANDAS/ Contact info for NIMH IVIG study: http://clinicaltrials.gov/ct2/show/NCT01281969

My younger dd (non-pandas) is an asymptomatic strep carrier (she has cleared all 3x with Azith). She cultures positive (1st time during dd's big PANDAS flare, likely picked it up at least 2mo. prior when strep going around dd's school, 2nd and 3rd time we knew to culture after strep notice in class and spike in symptoms with PANDAS dd). Yes, it is possible for a "normal" person to clear strep w/out treatment. I don't know if that person would ever culture positive (or it would be a relatively small time window where they would be positive) if they were never symptomatic. A true carrier would have a prolonged time when culture positive (if not treated) and should not otherwise have no symptoms (no immune response to strep, so no sore throat, no fever, no rise in titers).

yes dh was an ee major in college, works for big computer company now

I don't know about adults in particular...is your dh symptomatic? or an asymptomatic carrier? Asymptomatic carriers are more difficult to clear. Our carrier child (non-pandas) did clear on 5 days of Azith . She didn't clear on Augmentin. Azith or Clindamycin are supposed to be the best for clearing carriers. Definitely get a re-culture 2-3 weeks (or so) after last dose to make sure he really cleared. Do you know which antibiotic they were doing to use?

mommybee, "The problem with her logic (and apparently the logic of many people on these boards) is that public awareness doesn't fund research. The medical community is not any more influenced by media hype than they are by our anecdotal stories. Treatment protocols are based on peer reviewed studies not guest appearances on network television." True...although I would say it's good to ALSO raise awareness among parents in the popular press so they know to google to find out more, and ask the docs. But, the really quick and inaccurate coverage on Grant isn't helpful (aside from the fact we don't actually know if he has PANDAS, although Beth is convinced). This most valuable "publicity" IMHO (for the average parent) would be articles that actually reference the research (eg the recent Walrus article http://thewalrus.ca/a-feverish-debate/ , and Swidey's Boston Globe article http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html ), or even the article in parenting http://www.parents.com/kids/health/other-health-issues/pandas-syndrome/ not these short news casts that can't even give a half accurate picture of a complicated disorder. But I agree, we definitely need peer-reviewed research to convince the doctors (although it seems like there is already quite a bit out there)!

mommybee, "Telling our story could have been helpful. (I've actually been approached by a member of our treatment team who is a major researcher in the field about whether I would give my approval to use him as a case study.)" They never mention names in case studies, which is a bonus. I hope you do it.

Philamom, Yup, really with the culture test they have the ability to settle this debate once and for all. Take a bunch of people with chronic lyme off abs for 2 mo, then culture. Do it in the winter when there are no ticks around so the naysayers can't say "they just got reinfected).

To be a devil's advocate, how do we know these kids that supposedly got Lyme via Mosquitos didn't actually get from a tick bite that wasn't noticed (or even though in utero or through breatmilk?). Don't hate me, but I'm not at all convinced Mosquitos can transmit Lyme.

A good percentage of those with Lyme, don't remember a tick bite. The nymph stage of ticks (which can transmit Lyme) is the size of a poppy seed, so VERY easy to miss. These nymphs can also bite in tricky places which go unnoticed such as the hairline by the ears. One of my friends told me one of her in-laws got a Lyme from a bite near his "privates". My friends dd with Lyme/babesia doesn't remember a tick bite, but they went camping in many weekends over the summer in areas with ticks (N. Ca).

My friend's dd (now 15) had a formal diagnosis if "post-viral chronic fatigue syndrome" from a big name hospital. She wasn't getting better after 1.5 years. I finally convinced parents to see an integrative doc who did proper testing. She was positive for mycoplasma, Lyme (culture test positive), and Babesia. Her symptoms (not PANDAS) were brain fog, fatigue, pain, plus many other weird symptoms. I would look definitely look into Lyme (plus mycoplasma etc) in your case as PA is a HUGE Lyme hotspot. Realistically, you will need to get to LLMD for proper testing and treatment, although a workup with Dr. T. is a good place to start.