boychildsmom

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]."

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/

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

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.

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.

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

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!)

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!

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.

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).

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.

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!

* bumpity bump *

*bump*

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!

No wonder the baby carrots taste funky. I used to use the small bags in school lunch, but got complaints about the flavor--tastes like chemicals. No wonder. Eeeew.

I'd appreciate knowing her rationale, if you speak to her about pen v. azith, et al. Our MD follows RF protocol, too. We saw fluctuations on pen. He agreed to azith trial. So far, so good. Proof will be prevention at summer camps. Thanks!

...the risks were MINIMAL compared to life as we knew it and there is not a doubt in my mind that it completely saved my child's life. And if she didn't have IVIg they would have institutionalized her for sure. I firmly believe that I have PTSD from dealing with this illness. Anyone else? Curious. I can relate, and wondered if others felt this. Initial onset was so frightening, speaking about that year is still difficult. My safe place to vent was the laundry room, where I still occasionally flashback. The silver lining has been hearing my son's memories. He forgets the severe tics and his mind's betrayals. He remembers "wild dancing" together, but doesn't remember the tradition started with his chorea. He remembers singing in the car and bribes before doc visits, but not the long line of doctors. During blood tests and shots, we used a hand signal to show we were all on the same team. We still use it before school tests or music and sports events. Fear of the dark was one of his initial OCDs. It subsided with treatment. But we still use a bedtime ritual (each saying certain things in order) that used to calm him at lights off....and, still gets him yawning! I am amazed the experiences didn't leave scars or define those years for him. I agree it's a form of PTSD for myself and his dad. Maybe the flinching serves a purpose to keep us alert to signs of strep recurrence.

You won't find a doctor willing to wave PANDAS flag. You bet it's a conspiracy. AMA licenses doctors. AMA opposes NIMH findings. AMA doctors don't want to even look at PANDAS/SC kids. I went through the same frustration. We have no local doctors officially treating SC/PANDAS, except psychiatrists or neurologist, who want to prescribe psych drugs for symptoms. The pediatrician and infectious disease doctor we finally found don't technically treat tics/OCD associated with SC/PANDAS. They treat the underlying cause, which for him is resistant systemic strep infections. Not so coincidentally, his tics subside when GABHS bacteria is cleared out. If his tics didn't go away with proper treatment for resistant systemic GABHS, we'd be referred to a psychiatrist/neurologist for suppressants. So far, that's been unnecessary. His tics are so reliable with GABHS, his doctors use them as the primary diagnostic tool. But we also have swabs, cultures and titers taken, because the record needs to show a history of resistant systemic GABHS infections, in order to justify continued treatment on the antibiotics for infections and prophylaxis. His doctors know it's SC/PANDAS. They openly discuss both with me. But I'm sure they don't do so at AMA conventions. They are doctors, not lobbyists. Make sense? It's not worth approaching medical doctors with whacky shrink theories on SC/PANDAS. That is how Swedo's research is viewed by most doctors. Psych research is viewed skeptically by medical doctors. Swedo's research was a barn burner. Ask any doctor. They'll tell you. Personally, I think Swedo rocks. My son wouldn't have qualified for her research because he had chorea, but her team was still willing to make evaluation and diagnose for SC, if we couldn't find a qualified local pediatrician. Just an idea-- Try approaching a doctor with your concerns about resistant systemic strep recurrences. Say nothing about PANDAS, SC, tics, OCD, autoimmunity, titers, Swedo, et al. Pretend you know nothing. You are a worried parent whose child keeps getting strep infections. Go to a ped infectious disease doctor. That's who treats nasty bacterial and viral infections that family doctors can't handle. Resistant systemic strep is more serious than tics. Treat it that way. Don't hide your child's tics, but don't make a strep-tic connection for the doctor. If there is one, let the doctor find it. Bring no medical records or research. Maybe your between pediatricians, for example. List your child as having transient tics. Act non-chalant even if he's bouncing off four walls with tics. Afterall, tics usually subside with time. Suspend your disbelief. Only address the tics if the doctor asks. Even then, make no strep connection, except maybe they did show up when the strep started. Ask tons of unrelated questions...i.e., "Could some underlying condition be making him more susceptible to strep, like mono or lyme disease or lupus or diabetes or..." Allow the doctor to build the bridge between strep & tics. If he can't, find another infectious disease ped. Good luck!

"I personally don't think that 40% of PANDAS kids (SC?) not having cardiac involvement is significant..." Me neither. SC, PANDAS, transient tic, OCD and TS diagnoses are assigned and can be reassigned interchangeably, with little regard for labs or cardiac checks, the actual balance could be 2% or 80%. There's no accurate count of those affected, much less accurate predictions of cardiac involvement. Research on SC/RF populations shows higher incidence of heart involvement with GABHs recurrences. I'd rather be proven wrong by a cardiologist than be wrong assuming his heart is fine. "dr.K did not require heart work-ups for my kids....he didn't see the need...I did ask." I respect Dr. K's approach to treating SC/PANDAS. Your comment would indicate he doesn't know the incidence of heart involvement. It'd be helpful to know, but mandatory heart exams would be a cost deterrent to some patients who need IVIG.

I assume 300+ is her ASO. When my DS was younger, we usually saw mild tics and behaviors above 300. You mention colonization. Have you thought about GABHS de-colonization? You reminded me that the first course of rifampin & clindamycin my son received was given more frequently. We had to wake him for a dose....either six or eight hour intervals. That course was supposedly for decolonization. I don't know if he was a carrier, but his titer eventually went to normal range. Just a thought.

PEX might be worth revisiting in the future. That's terrific being able to check titer levels during the procedure. Thanks for the response. All the best to your son.

"Dr.K has told us he has not seen cardiac involvement in PANDAS....and 60% of SC kids have cardiac involvement? Then 60% of PANDAS kids would have cardiac involvement." But a significant number (40%) of SC (/PANDAS?) kids would not have cardiac involvement. I contacted Dr. K about IVIG, but didn't inquire about preparations. Do you know if he requires cardiac work-ups in advance of treatment?

DS receives 250mg/day. He's 12 y.o. @ 145lbs @ 5'4"+ (taller than Mom...wah!). He previously was prescribed 500mg pen BID. Interestingly, lower dose azith is working better than we ever saw on pen. My son loves the results. There's typically a few weeks symptom backlash post-GABHS. This time his residual tic dissipated within a day or so starting azith (caveat--his recent GABHS tic was relatively mild after treatment, but still sometimes annoying). If azith can prevent GABHS, I'm sold. Do you check ASO titers? Could your son have a mild GABHS infection? That would explain seeing his symptoms ramp on lower dose. The lower dose wouldn't adequately prevent antibody production. Your immunologist is smart keeping him on a higher dose pre-IVIG. He'll get better results if GABHS bacteria/antibodies are minimal to start. My son's MD prescribed clindamycin & rifampin pre-IVIG--and treated us, too (and the dog!). He said IVIG results would be shortlived if my son had an active GABHS infection or caught one immediately, because he'd resume producing antibodies. When do you give antibiotics? I used to give them in a.m. Now I give at bedtime. It seems to minimize residual symptoms resulting from fluctuating medication levels. Any peak occurs while he sleeps....wakes with consistent level. I've never seen medical research supporting doing this--but it seems to work better for him. You might try and see how it works for him.