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Everything posted by Worried_Dad

  1. For our ds, IVIG alone didn't last until we got the right dose of the right abx ("Saving Sammy" dose of augmentin XR). In our case, we later found that our entire family had elevated ASO, so the problem may have been that he was always re-exposed after IVIG. (We did 3 rounds with Dr. K.) So - based on our experience - I think it's crucial to find the right dose of the right abx for your child, then go for IVIG as the "big gun" to get the autoimmune response under control. That gives your child the best chance to avoid re-infection and maintain their gains. Others' experiences may be very different. Just one opinion, for what it's worth!
  2. Just finished reading the April issue of Discover Magazine. It included an interview with Dr. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University's Mailman School of Public Health. Dr. Lipkin was involved in the ground-breaking study that announced in 2009 the re-creation of PANDAS (essentially) using a mouse model ( http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice ). Toward the end of the interview, Dr. Lipkin specifically mentions PANDAS as "one of the most fascinating links between infection and mental disease." Here's the excerpt: Thought it was interesting that he mentions "other infections" as likely culprits in opening the blood-brain barrier. (I know a number of the PANDAS specialists have theorized about that, too.) Anyway, in the past few months, PANDAS has been mentioned by leading docs in both Scientific American and Discover. Pretty encouraging!!!
  3. When our ds was in full PANDAS exacerbation, he repeatedly begged us to kill him and said he "just wanted to die." Unfortunately, this is not unusual: when their brains are literally on fire from the autoimmune attack / inflammation, they are as overwhelmed as we parents. A few words of warning from painful experience. If your child expresses suicidal thoughts, take it seriously and monitor closely. Our ds did try to act on those feelings one time, grabbed a kitchen knife (luckily a dull one) and dragged the blade across his wrist. Absolutely terrified us! Also, many of the traditional psych meds prescribed to combat OCD and depression have an opposite effect in PANDAS kids. They're actually activating or dis-inhibitory, especially at "normal doses." So if your psych pushes this option, it's vital to go "low and slow" with dosage. You have our prayers. Nothing is more horrifying to a parent than hearing your formerly happy, healthy, well-adjusted child express a desire to die. With treatment, that nightmare does go away!!!
  4. Awesome news - success stories are much needed and appreciated!!! Just curious, had you altered ds's treatment regimen at all recently? Any new meds, supplements, therapies? Always looking for clues to get our ds to that nirvana state of "complete PANDAS remission".... ;-)
  5. Our ds had been making steady progress on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) until last Fall, when he came home from school complaining of feeling sick and his PANDAS symptoms surged more noticeably than they had in years. Eventually we took him to the local family doc, who took one look at his throat and said it looked infected, probably strep. We kinda freaked - how could he possible have strep throat on treatment-dose aug XR?!? Local doc (still a PANDAS skeptic) prescribed standard zithromax 5-day Z pack, and our ds felt better... but started to backslide after the zith ran out. We took him to the LLMD (great doc, but about an hour away) and got him to prescribe longer-term zith. So right now, he's on both zithromax (250 mg daily) and reduced-dose aug XR (500 mg twice daily). Knock on wood, that seems to be working, and he's regaining the ground he lost last Fall. I don't understand this phenomenon, either, but some kids on this forum end up having to switch from an abx that worked well for a time but then lost effectiveness (or use an abx combo). Different strains of strep? Or just another bacterial infection that triggers the dreaded autoimmune response? Don't know. Anyway, adding the zithromax seems to have helped our ds, so trying a different abx might be worthwhile for your ds as well?
  6. Hi, JunkyardJean (cool user name!): Our ds was originally diagnosed with ARF / SC due to symptoms similar to your daughter's although he had severe "seizure-like episodes" in addition to the migratory joint pain. After his ASO titer came back highly elevated, a local doc made the SC diagnosis. It definitely seemed to fit. Later, after abx were discontinued and he had another major exacerbation following strep exposure, the diagnosis was officially changed to PANDAS. Frankly, I think ARF, SC, PANDAS, and a number of other similar strep-induced autoimmune conditions (reactive arthritis, glomerulonephritis, etc.) are part of a spectrum of related disorders. This is what several PANDAS specialists told us over the past 5 years. Our son didn't fit neatly into one diagnosis and seemed to fall somewhere between SC and PANDAS. Some researchers even suspect that SC and PANDAS are just different manifestations of the same basic disease, not completely distinct disorders. From our own painful experience, though, I'd suggest the following. Don't worry too much about the exact diagnosis, but pursue treatment aggressively until you dd is back to baseline. When our ds was originally diagnosed with SC, we made the mistake of just accepting his symptoms and waiting for a miracle to occur because the medical literature said that SC was "self-limited," meaning that it would (supposedly) spontaneously resolve in 9 months to 2 years. While we waited for that miracle, our ds got sicker and the autoimmune attack on his brain continued. MAJOR lesson learned on our part! Don't spend too much time trying to find a knowledgeable, sympathetic local doc (if you don't already have one you trust). It's certainly a big advantage to have a local doc like this... but we wasted far too much time searching for local support after our original diagnosing doc passed away. If local docs aren't willing / able to help, find an expert, even if that means traveling out of state, and continue the search for a local doc afterward. The expert's diagnosis may even aid you in convincing a local doc to help. I know this is all terrifying and overwhelming right now... but the Rheumatic Fever diagnosis (even if it's not the complete answer) might actually be an advantage in getting treatment for your dd. The official medical "standard of care" for RF is long-term abx prophylaxis until adulthood. For those of us who wound up with a PANDAS diagnosis, we often had to beg and plead endlessly - or go from doc to doc - to try to get abx for our kids. For our ds, the long-term abx (augmentin XR in our case) have been crucial to avoiding further exacerbations and allowing him to heal. Is your dd still on the abx? Which one, and what dose? Many on this forum have had to try a series of abx (and doses) before finding the one (or combo) that did the trick for their child. For our ds, prophylactic doses didn't cut it - he needed a full treatment dose, long-term, to make progress. BTW - our ds was originally put on amoxicillin, too. It might have kept things from getting worse but wasn't sufficient to let him get better. We needed the augmentin XR for that. Amoxicillin and penicillin seem to have a pretty high failure rate for kids on this forum. Hang in there. With proper treatment, your dd will get better. PANDAS/PANS is becoming more accepted, getting more press, and treatment options are expanding. There is much cause for optimism for all our kids!
  7. Hi Worried Dad, I could be wrong, but I'm pretty sure Augmentin XR only comes in 1000mg tablets. If it is a 500 mg tablet, then I don't think it is extended release. Hah - yeah, that's what we thought, too, and maybe that was true in the past. But both our LLMD and pharmacist assured us that aug XR is currently available in 500 mg tablets, and that's what the LLMD prescribed to give us more flexibility in adjusting dosage and "ramping down" over time. Looking at the bottle right now, and it says "Augmentin XR - Amoxicillin/Clavulanic 500MG/125MG PO TAB" on the label. So for those who might need the smaller dose, or the ability to go for "in-between" doses like 1500 mg per day, it's a nice option!
  8. In Sept 2011, our PANDAS ds had his worst flare in 2+ years, since starting the "Saving Sammy" dose of augmentin XR. He felt miserable, went into our family doc (not terribly "PANDAS friendly") who looked at his throat and said "wow, it looks red and infected." D'oh! We couldn't imagine he could get a GAS infection on the aug XR, but something hit him. Family doc gave us a 5-day zithromax Z pack, which made a big difference... until it ran out. So now ds (thanks to our main "PANDAS-friendly" LLMD) is on 500 mg of aug XR twice a day and 250 mg of zithromax daily. The combo seems to be working well, and he's regained the ground he lost last fall. Was it really strep? Can't say for sure... but it scared the heck out of us!
  9. We did the "Cunningham test" before and after treatment for our ds. His CamK II level was 197 (high PANDAS / low SC range) before IVIG. After IVIG and treatment-dose abx, we re-tested, mostly to confirm the improvement we saw and also because Dr. C felt this would have research value for her. His CamK II level had dropped to 109. Can't honestly say if it was just IVIG that produced the drop, or the "Saving Sammy" dose of augmentin XR, or both. But the level came way down, which was comforting!
  10. Our PANDAS ds has frequently complained of dizziness. During his initial illness (when he was diagnosed ARF / SC), he often had a clumsy, drunken gait while walking and seemed to have balance issues, sometimes crumpling to the ground (we called it "the rag doll effect"). This is a common symptom for SC and appears to affect PANDAS kids as well. Related to the basal ganglia inflammation / motor control issues?
  11. Great news, Nancy! Praying our ds (who turns 16 in June) can follow in your son's footsteps!!!
  12. Yeah, I was trying to be funny. There's a reason I haven't landed that special on Comedy Central yet, eh? But I do sincerely believe that the info shared by the "scientifically minded" on this web site has educated me more thoroughly than any other source. So maybe a "forum paper" is a better fit?
  13. Wow - those are excellent credentials for evaluating these research papers. I think you and Buster should collaborate on a "PANDAS white paper." That's one I know I could support without reservation!
  14. Our PANDAS ds's original symptoms began with joint pain and muscle weakness: classic ARF symptoms that were followed 6 weeks later by SC symptoms (seizure-like episodes of choreiform movements). Several of the PANDAS specialists with whom we've consulted believe that ARF, SC, and PANDAS are all on the same "post-strep autoimmune spectrum" of illness. So Lyme is definitely something to consider, but this can also be a post-strep, RF-like symptom.
  15. Overall, I'm heartened by the white paper. Seems like it's an incremental step in the right direction. My take at this point is that Dr. Swedo is being very, very cautious as she makes the case for PANS because she and her team were attacked so ruthlessly for the original PANDAS hypothesis. Here's the statement that struck me: As others have mentioned, the main "PANDAS bashers" came from the tic / Tourette's camp, so avoiding anything that overtly antagonizes this group is probably a political necessity at this point. I agree that it's frustrating - our ds originally presented with tics / pseudo-seizures and no recognizable OCD (and was diagnosed with SC instead of PANDAS at that point) - but I can understand why she's treading softly. It sucks that politics is such a key consideration in the medical research arena... but that's reality, I guess. I think Dr. Swedo and her team are trying to compromise "for the greater good." And frankly, if this gets docs in the trenches to consider a PANS diagnosis more seriously, I think it's inevitable that they'll observe patients (like my son) who clearly fit this diagnosis but who have tics or choreiform movements as a primary symptom. Can't blame NIMH for being a bit gun-shy after the firestorm of "controversy" (i.e., withering scorn and professional ridicule) that the unveiling of the PANDAS hypothesis triggered over the past decade. They're on to something incredibly important - it could literally transform the treatment of mental illness - but they can't afford to get "filibustered" by prominent naysayers any longer. That hurts countless families and afflicted children. So I think they've made a tactical decision to narrow the initial scope of PANS so it has a better chance to gain a foothold, then they can expand from there. So I think we in the PANDAS / PITAND / PANS (or whatever the heck we are) community need to be patient. With all the publicity, and the the respected researchers (like the folks at Columbia and Tel Aviv providing corroboration via animal models, and the Jenike interview in Scientific American) voicing their support, the tide is definitely turning. Vickie's "Year in PANDAS retrospective" videos always remind me of how far we've come (and get my adrenaline pumping)!!! We're not at the end of the road yet. But at least we're passing major milestones on the journey to the medical establishment acknowledging the terrible illness that torments our kids. That's a wonderful thing!
  16. Great memory, EAMom! Yeah, I was diagnosed with Crohn's in 1990 at Mayo Clinic, although it was "not typical" Crohn's. Now that diagnosis is in question (local gastroenterologist is no longer convinced it fits, based on latest colonoscopy). So I'm back to square one (familiar territory for folks on this forum, eh?). Just started consulting the same LLMD who treats our PANDAS son, and he ordered a bunch of tests. Said he's had other patients originally diagnosed with Crohn's by "process of elimination" who have ended up having a different issue. So I "sort of" have Crohn's - was treated for it for about 20 years (until last summer, when the local doc called that into question). Wish I had better info for you. Emmalily, I'll keep you posted as the LLMD moves forward with diagnosis. Chemar's son has both a TS and Crohn's diagnosis, I believe. She might have valuable insight here: I know she's found a treatment regimen that's been very helpful for her ds.
  17. So happy to hear that the meeting was well attended and such a success. Wish we could have been there... but, honestly, we were there in spirit. Vickie, I'm assuming you created the Rascal Flatts opening? Gotta say, you have a gift: this and the other videos you've created (like the one for PANDAS Network) always put my heart in my throat but totally inspire and energize me! Congrats, those of you who organized this Parents Meeting. You've done a great service to all of the PANDAS families across the country and the world!!!
  18. Our son (ds11 at the time) was very similar to this. Wow, Jtsmama, your post was like a Vietnam flashback for me: sent chills down my spine! Our son lost 20 lbs in a few months, and we had to repeatedly remind him that we'd have to put him in the hospital for his own good if he didn't eat. Our house was like a war zone back then. So here's the good news: Like JAG10's dd, our ds came back from 1st round of IVIG with Dr. K and within a few days started eating like a horse! Went from being unable to eat (due to OCD fears) to eating more at one sitting than seemed possible. Huge relief! He had subsequent flares, but after we got him on the right dose of the right abx (for him, augmentin XR @ 2000 mg / day), he's been making steady progress. He eats well now (like a typical teenager - our grocery bills are killing us, but we love it!!!). Hope you find similar relief from PEX or IVIG if you go that route. As others have mentioned, making sure your ds's abx are sufficient to prevent re-infection (or kill off existing infection) is equally crucial to sustain the gains after IVIG/PEX. Best of luck!
  19. Yep, that was another of the terms applied to our son's movements.
  20. I second the motion!! Beautifully crafted posting guidelines for this forum & topic.
  21. Our ds's original symptoms began with joint pain, muscle weakness, difficulty walking, and (most scary): rapid, jerky, uncontrolled movements of his arms and legs. These were at various times called by different docs "choreiform movements, adventitious movements, seizure-like episodes, tics," and of course (grrrr) "psychogenic movements." The seizure-like episodes put our ds in the ER 5 times in one month, when his violent thrashing literally rattled the exam tables for 60-90 minutes; he would be sweating profusely and begging for relief. Terrified us. At one point, this led to a diagnosis of Sydenham's chorea, eventually changed to PANDAS. We were told by docs that it really wasn't SC because in SC the movements are pretty much continuous, not episodic like our son's. Other parents have reported similar symptoms for their PANDAS kids, so I think that (unfortunately) the basal ganglia inflammation can cause this as it does in SC. For our ds, the movements gradually subsided / became more "classic tic-like" over time, and OCD became far more crippling than the tics in later exacerbations. Hope your dd finds relief very soon!
  22. Our ds tested indeterminate on Igenix for Lyme and 1 co-infection (ehrlichiosis). We are seeing a local LLMD we really like, and he does not believe our son has Lyme or ehrlichiosis but continues to prescribe augmentin XR for PANDAS. Here's a thread on the topic: http://www.latitudes.org/forums/index.php?showtopic=11408 From this old thread and your current one, danddd, you can see that this question inspires passionate debate (kinda like between Republicans and Democrats in DC ;-) on this forum. Bottom line: PANDAS and Lyme / co-infections are both in the broader category of PITAND, and the clinical lines between them get very blurry. It's brutally hard to distinguish between them, with either current lab tests available or clinical picture. I think LLM said it well several times in her posts. If your child isn't improving on one treatment regimen under one diagnosis, keep testing and searching until you find the treatment(s) that work best. Nobody really knows all the answers yet, including the "medical experts" specializing in both PANDAS and Lyme.
  23. I'm afraid this was us: http://www.latitudes.org/forums/index.php?showtopic=4447 The local pediatric neurologist who agreed to "arrange" local IVIg for our ds refused to get involved when our son became dizzy, weak, and nauseous halfway through the 1st day. The local infusion clinic didn't correctly follow Dr. K's protocol: they were infusing about twice as fast as Dr. K recommends (even though I told them this up-front and during the procedure). The ped neuro's office was literally 1 floor away from the infusion clinic, but she refused to get involved and told the infusion nurse to contact Dr. K, effectively leaving him "on the hook" for supervising a procedure from hundreds of miles away. Sigh. SO sorry to hear that this may have discouraged Dr. K from working with local docs on behalf of PANDAS kids. If this is the reason, then the local ped neuro here did more than just a gross disservice to our ds: her refusal to accept responsibility for a patient has harmed the entire PANDAS community. From what I recall, the main things about Dr. K's protocol that were unique were: Gamunex Ig @ 1.5g / kg Infusion spread over 2 days Very slow infusion rate that gradually ramps up, depending on patient reaction (almost twice as slow as most "standard" rates at infusion clinics) Lots of fluids (D5W? IV drip) before and after (Gamunex cannot be flushed with saline!) Benadryl before procedure to relax the patient Decadron steroid after infusion if patient's condition is severe The main thing about Dr. K's protocol when he directly supervises at the Oakbrook Surgical Center outside Chicago - he and the staff there are experts at dealing with the special challenges presented by PANDAS kids in exacerbation. We did 3 rounds there, and I don't believe our ds would have made it through the procedures at any "standard" infusion center. It takes extraordinary patience and creativity to make this work for a kid with extreme OCD, anxiety, and/or tics. Wishing you the best of luck, BoyIowa. It shouldn't be this hard to get help for suffering children!!!
  24. Nancy, awesome to hear that the dose reduction is working better this time. We're trying something similar, but too soon to tell. Please keep us posted!
  25. Our ds had both an electrocardiogram and echocardiogram at different times to check for this. Thankfully, everything tested normal.
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