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boychildsmom

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  1. This 2005 article addresses and cites research on inflammation and links between strep/SC/RF and schizophrenia-- Theories of schizophrenia: a genetic-inflammatory-vascular synthesis Daniel R Hanson1 and Irving I Gottesman2 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC554096/ Excerpt: "Sydenham chorea is the best-known neuropsychiatric complication following streptococcal pharyngitis. The association of psychoses and Sydenham chorea as well as with RF even in the absence of chorea, was discussed in the 17th and 18th centuries starting with Sydenham himself (see [186]). The interest in psychoses associated with RF continued throughout the 1900's [187-197]. People with a history of Sydenham chorea and/or rheumatic fever are at high risk for developing psychopathology later in life [198,199] with a relative risk for schizophrenia as high as 8.9 in a 10 year follow-up of 29 Sydenham patients [200]. There is a suggestion that the family members of Sydenham patients are also at higher risk for psychosis [201]. During the 1940's-1960's when RF was still quite prevalent, people with psychoses appeared to have higher than expected rates of histories of RHD or RF)[195,202,203] or rheumatic chorea [204]. Psychotic patients with RHD more often had early (<age 19) onset, movement disorders, progressively insidious courses and poor long-term outcomes [203]. Preliminary data from a Minnesota study also finds increased rates of RHD in psychotic patients, a pattern of increased psychiatric hospitalization following an epidemic of RF, and a clinical course for "rheumatic psychoses" that disproportionately led to a severe and continuous decline in function [205]. Although schizophrenia-like psychoses were the most common psychopathology related to rheumatic syndromes, manic-depressive, involutional, and senile psychoses were also observed [183,197]."
  2. Leroy's local news editor is polling the masses...what do you think is causing the "mystery" symptoms? Let's all participate! http://thebatavian.com/
  3. More on Witnitzer... http://www.nbc33tv.com/news/national-news/strep-infection-can-trigger-ocd-in-extremely-rare-cases http://origin.wkyc.com/news/article/212531/7/Possible-but-rare-to-catch-mental-disorder
  4. 1) that the ONSET of PANDAS was indeed prepubescent, that they actually had low grade symptoms (I understand some had tics/other issues) that were misdiagnosed PANDAS, flying under the radar so to speak, and now the girls are severely symptomatic with this latest "hot" trigger Jumped out at me too, that at least one had earlier episode of tics. Right, maybe others presented with OCD or PDD or behaviors or even eating disorders, that would not prompt a pediatrician to consider strep. For some this could be onset, others a recurrence. Or, maybe myco, which wouldn't seem as prevalent in a school as strep, but Dr T mentioned a recent myco outbreak. 2) there is a new strain of strep (or something else) that is triggering PANS in an older age group Older people are not immune to group A strep complications, no more than we are immune to strep throat. But the mature immune system is better able to prevent infection. 3) this is actually Sydenham's Chorea I haven't been able to find research definitively identifying unique clinical markers of SC and PANDAS...if anyone has some, please share. 4) also, (as you guys probably know) Dr. K. (and Dr. T.) have written about adolescent/adult variants of PANDAS Did they happen to mention why SC was ruled out? Or didn't DENT not think of that one? They said one patient tested + for strep throat, which Mechtler repeated in an interview. I asked, but they did not confirm whether ASO/ADB titers were run.
  5. I contacted NYSDOH & Dent Institute when the story broke to alert them to the possibility of PANDAS. Dr. McVige confirmed they ruled out PANDAS based on age. Although most commonly <15 the diagnosis does not preclude >15. There are documented cases of SC onset in teenagers and even adults.
  6. http://thebatavian.com/leroy (click link and scroll down...it's not the first article) http://www.cbs6albany.com/news/symptoms-1290009-corinth-girls.html http://www.theweek.co.uk/health-science/44544/ny-schoolgirls-hysteria-doctor-blames-constant-terror-alerts
  7. Question: 1. Is your child taking long term daily abx for PANDAS and if so, Yes. Initial dx PANDAS/SC. Subsequently switched dx to "strep" (resistant, systemic strep--not strep throat). 2. which abx and what dose and Initial treatment (time of dx): one month clindamycin & rifampin Prophylaxis: 250mg azith daily (currently weaning) 3. what is your child's age, weight and Age 15 (dx'd age 5) Approx 175-180 lbs...haven't checked lately 4. number of severe PANDAS exacerbations - AND, First exacerbation very severe, didn't help that it took a year to get dx and treatment started. Subsequent exacerbations treated quickly (10-day clindamycin & rifampin) so never exceeded mild. In last two years, one mild strep break through requiring 10-day clindamcyin & rifampin. 5. current status of remission at this point? Asymptomatic. No evidence he ever had severe tics or OCD. Now he recognizes earliest symptoms of exacerbation (for him, OCD). Caught at that stage, he only needs a few days double dose azith (500mg) to knock it out. (he is older than most on board; we did it for him as little boy; he does it better!)
  8. When DS15 was dx'd age five, we had previously tried amoxy (got worse) penicillin and augmentin (temporary improvement, spiraled back down rabbit hole), azith (slight improvement, but ped would not go long term). By then he was a mess. An infectious disease doc prescribed rifampin & clindamycin combination for a month--worked like a charm. He remains on azith prophylaxis. For break through infections, he only needs 10-day clindamycin & rifampin. Studies show they are two of the most effective oral ABX (each used alone) for resistant group A strep and other bacterial infections. Combination is a powerhouse. I like that symptoms subside fast and he does not have to be on months of high dose ABX. Your mileage may vary, but might be worth a try. Good luck!
  9. You mentioned vomiting. Dull (not upset) stomach pain and vomiting can be a sign of strep infection. Sounds like your son reinfected whether by transmission or bacteria regrowth. Advil 1x daily doesn't bother DS15, but ibuprofin can cause stomach pain. Might he have a gag tic? That could cause vomiting without stomach upset. The decline after switching to augmentin would indicate he needed longer course of clindamycin. Best not to stop an abx when you are still seeing improvement. IVIG isn't as effective if strep bacteria is actively proliferating. That may be what's happening if your son was not on abx long enough. Maybe his doctor would consider a month on clindamycin. Augmentin doesn't work for DS. His doc says penicillin-based abx works better for localized strep, not systemic strep. Likewise, DS does better on azith than bicillin/penicillin prophylactic. Maybe your son's doc would consider combining azithromycin and augmentin. Or, rifampin could be added to clindamycin. That's what we use, plus azith prophylactic. Regimen works great. Being impatient, I appreciate that clindamycin & rifampin work quickly. We used IVIG with some subtle improvement. By then he was much improved. For him the treatment abx was the powerhouse. We opted aganst repeat IVIG since effects were temporary. His doc felt risks outweighed benefits with steroids. But others have had success with steroids, so maybe they can chime in.
  10. Azithromycin (or zithromax) stops bacterial growth. Tablets are 250mg or 500mg. Oral suspension probably comes lower dose. For normal treatment of strep, sinusitis, bronchitis, etc. it's usually prescribed five days @ 250mg w/double dose (500mg) on day one. As prophylactic, it's usually prescribed 30-day refillable @ 250mg. It's used to prevent bacterial infection in people at higher risk of complications. For prevention it can be prescribed daily or 2-4 times weekly. A 200mg or 250mg dose would not provide continual protection for four days (search on "azithromycin half life" for more specific info).
  11. DS14 receives prophylactic azith 250mg daily. We (and he) prefer azith to bicillin / penicillin for strep prevention. At first sign of suspected break through infection, he gets clindamycin & rifampin. Combo works great for him.
  12. Sorry you can't make the meeting, but I totally understand. Should be interesting. We have one, possibly two parents of dual dx autism & pandas children. And, we have a recent pandas dx plus a veteran (aka OLD, dat'd be me!). Definately, we'll keep you in the loop next month. Take care!
  13. Central Indiana PANDAS Support Group Please join us for monthly meet-ups (second Monday of every month) to relax, share experiences, and meet other parents! When? 6:30 p.m. Monday 9/12 Where? English Ivy’s Restaurant 944 North Alabama Street Indianapolis, IN 46202 Who? All are welcome!
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