Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Worried_Dad

  1. Incidentally, there was a great book titled "Asleep" on this same subject a few years ago. Well worth the read, if you have time: http://www.latitudes.org/forums/index.php?showtopic=7175&view=findpost&p=58259
  2. worried dad -- please do post about how that goes. i am interested in ramping down stories. thanks. Yep, I'll share the results. To be completely candid: we tried ramping down this summer from 2000 mg to 1000 mg (we had a script for the 1000 mg XR pills, so couldn't really go to 1500). After about 3 weeks, our son said he felt things coming back, so we returned to the 2000 mg dose. Kinda bummed me out, frankly... but it was worth a shot. (Our other 2 boys continue to show high strep titers per blood test, so - unfortunately - our PANDAS ds may still be living in "Strep Central". The LLMD is running repeat titers on them before he decides how to proceed.) Anyway, our doc prescribed the 500-mg XR pills this time so we can try incremental reduction. We're starting 1500 mg this week and will see how things go. I hope to share a "ramp-down success story" soon!!!
  3. 2000 mg daily for 2 years now. We're about to try ramping down to 1500 mg to see how that goes.
  4. Hah - by coincidence, I heard a segment on NPR not long ago where they discussed RTMS and its use for severe OCD. The lead physician said it wasn't effective for everyone but showed major promise / major quality-of-life improvement for some patients. Sounded extremely intriguing! Here's a link to the NPR story, btw: http://www.npr.org/2011/07/27/138748778/parkinson-s-treatment-could-work-for-ocd-too
  5. Pandas16, I greatly admire your courage and willingness to give the docs the benefit of the doubt. As the actual PANDAS patient, your perspective may be very different from a parent's, understandably. But I have to say that - as a parent trying to find treatment for a desperately ill child - I'm not so forgiving and echo MomWithOCDSon's feelings. (Please forgive the rant in advance, or skip this, but this topic hits a nerve!) I understand that this is a new illness, woefully ill-defined with no clear "standard of care" yet, but that should not (IMO) be an excuse for local docs to simply ignore a patient completely. Going to see a PANDAS expert is excellent advice - it was key for us as well - but when they're hundreds/thousands of miles away, they can't be your child's PCP. Dr. K made it clear to us that we needed to find a local doc who was willing to at least coordinate care with him, prescribe the necessary abx, etc. We searched for years - saw dozens of docs - to no avail. Even when we brought half a dozen published journal articles, plus contacts for expert clinicians/researchers around the country who had generously offered to speak with local docs on our son's behalf, these local docs declined to even read the materials or make the phone calls. That's inexcusable. The specialists we saw never even bothered to order a single test, just told us to see a psychiatrist and hustled us out as quickly as they could. They insisted it was a purely psychiatric issue despite the following: Symptoms exploded out of nowhere after high fever Blood tests showed consistent abnormalities (elevated RF, ANA, ASO) associated with either autoimmune or infectious illness Had neurological symptoms in addition to psychiatric symptoms that developed simultaneously (excruciating headaches, muscle weaknesss / difficulty walking, enuresis, extreme sensory defensiveness, etc.) PET scan showed inflammation in basal ganglia Cunningham test results (admittedly research-based) placed ds in high PANDAS range Consistent improvement on abx and IVIG (when we could get them) Consistently adverse reaction to virtually all psych meds Our son's PET scan was performed by Dr. Chugani - head of pediatric neurology at our state's largest children's hospital, unquestionably an expert in this field. When he tried to proactively contact our local specialists to recommend IVIG for our ds, they literally told us "since he (Dr. C) hasn't published his clinical results, his opinion is anecdotal and irrelevant." Crowning blow: after another infection triggered relapse following 1st IVIG and Dr. K said we absolutely needed another round (but we couldn't afford to do it in Chicago again and pay up-front), we begged a local pediatric neurologist to order it per Dr. K's protocol and she said she would "arrange" it. The infusion clinic didn't follow Dr. K's protocol, though, infused far too rapidly, and our son had a bad reaction (dizzy, nauseous, racing heart). The infusion nurse paused the infusion so she could contact the ped neuro... who disavowed any responsibility for the procedure and refused to get involved at all, placing all responsibility on Dr. K (who was a thousand miles away). Her office was literally one floor up from the infusion center, but she would not get involved. So they sent us down to the ER for observation and then discharged us, canceling the IVIG. Shortly after that, our ds had his worst exacerbation ever and was literally in H-E-L-L. ( http://www.latitudes.org/forums/index.php?showtopic=4447 ) After starting the "Saving Sammy" dose of augmentin XR, our son began a dramatic and steady improvement. I wrote a letter documenting this to all of the local docs we had seen who declined to treat him (because "PANDAS doesn't exist," or "it may exist, but your son doesn't have it because it's too rare," or "he may have it, but there's no proven treatment so we can't do anything"). The letter wasn't accusatory: I just shared our experience in the hope that it would help other children in the future and offered to share more details with any of them at any time. Only heard back from one: a child psychiatrist who thanked us for the information and assured us it would help him in the future. The psychiatrists and psychologists we saw were actually wonderful: they consistently agreed that our son's illness was not primarily psychiatric, but the "normal" M.D.'s ignored this and said our son's condition was "not medical" (!). Never did find a local pediatrician: half a dozen who said they were accepting new patients turned our ds down because they "weren't equipped to deal" with something like PANDAS. These are just variations on the theme common to so many family stories on here, I know. For our family, we all suffered terribly because we knew something awful was happening to ds but we could not find any local medical professional to help. We had to pay out of pocket for almost everything. It was like fighting the illness and the healthcare system at the same time, as the "war on 2 fronts" drained all of our energy, hope, and finances. Obviously, we did find wonderful docs who were brave enough to stick their necks out and treat our ds despite the risks. Maybe the problem isn't the docs themselves but the system: are they terrified of litigation if they think "outside the box," advised by legal counsel to avoid anything controversial? I don't know. I just know that no suffering child or family should have to experience this! Wish I knew how to fix this. But - for now - I have a deep distrust of our healthcare system that won't go away anytime soon.
  6. Great news, emmalily! Enjoy life and give yourself a mental break from PANDAS - you deserve it. It's your turn to make your friends jealous!
  7. Hope you have better luck than we did, Christina. We tried 3 different ID docs over the years, and they were worse than no help: they actually discouraged our PCP from offering abx despite elevated strep titers because "chasing titers in the absence of symptoms is not warranted." (All of the PANDAS rapid-onset neuopsych symptoms "didn't count": they dismissed these as unrelated, suggested psych meds, and offered referrals to psychiatrists.) When we begged them to contact the experts we had consulted (Dr. K, Dr. L, Dr. Leckman, Dr. Cunningham, Dr. Chugani), they either dismissed these experts' opinions as "anecdotal and irrelevant, because they haven't published" or (for Drs. Leckman and Cunningham, who have published widely) took refuge behind the good old excuse "controversial and unproven theories." Sorry to sound bitter... but these ID docs weren't even willing to order any tests, much less consider treatments. And their "expert opinions" that PANDAS was not a factor in our ds's illness made it much harder to find help from other local docs. If you can't find another PANDAS family who has seen the ID doc and had a positive experience, I'd proceed with extreme caution. Best of luck!
  8. Our ds did very well for about 8-10 weeks after IVIG round 1... until another infection erased the progress and eventually led to an even more severe exacerbation. He, too, was on 500 mg of abx (augmentin) once per day for prophylaxis. For him, that dose did not work. Once we obtained treatment-dose abx (augmentin XR - 1000 mg twice daily) for our ds, he began to make steady progress that he's maintained for almost 2 years now. The dose is critical, in our experience!
  9. For our ds, each exacerbation (without effective abx treatment) became more severe. That's what really, really scared us as parents. But he's doing very will now after almost 2 years on augmentin XR, so we're keeping our fingers crossed that the darkest days are behind him!
  10. Add our ds to this list. He does well in math again (now that PANDAS is under control) but agonizes over any problem that requires he "show his work.". He can get the answers right but cannot for the life of him explain how. Don't recall him having this issue BP (Before PANDAS).... ;-) P.S.: he also loves languages (other than English) and is learning Japanese right now!
  11. Yep - we did this back in March 2008 and it confirmed inflammation in the basal ganglia. Dr. C was wonderful: he personally intervened to get us an appt with our local ped neuro clinic after they'd been rejecting us for almost a year. Was nice to have that extra corroboration... even though most of our local docs ultimately ignored it. (Sigh)
  12. As I understand it, ASO rises faster after a GAS infection (1-4 weeks) while anti-DNAse B rises later (6-8 weeks). So it makes sense that the ASO might begin to decline (with abx treatment) while the DNAse B is still on the way up (in theory - not much research published on the rate of titer decline). Here's a great thread of Buster's that discusses this in more detail: http://www.latitudes.org/forums/index.php?showtopic=3756&view=findpost&p=96918
  13. I agree that it's prudent to start with the rapid, then the extended culture. Just wanted to point out that we're one of those "weird" families where none of us has ever had a positive throat culture, yet we've all shown elevated ASO which went down after abx. Our PANDAS ds never had a positive throat culture, yet his ASO always rose with exacerbation and fell after extended abx treatment. Others have posted on here about the harsh reality that strep can harbor in lots of places other than the throat (although may docs don't seem to appreciate this). Gory details for our family here: http://www.latitudes.org/forums/index.php?showtopic=7430
  14. Yep - our ds had 3 rounds of IVIG with Dr. K. Ds did very well for 2-3 months after round 1, then another infection sent him downhill. Dr. K recommended another round... but we wasted months trying to get a local doc to order it locally in-network. (Couldn't afford to pay up-front again at the time.) Long, bizarre story - 2 local docs agreed to order it, then reneged - and after another horrible exacerbation, we did 2 more rounds 28 days apart (because things were really grim and Dr. K wanted to "knock the PANDAS out"). So we did 1st round in Oct 2008, waited too long, but then did 2 more rounds in June and July 2009. From what Dr. K said, he often sees older kids (> 10) need a 2nd round but will go to additional rounds if warranted, based on patient's condition and response. Good luck!
  15. Wow - that is poetic, poignant, and haunting. I'm writing that one down. Your dd won't sue me for plagiarism, will she?
  16. We considered trying Rogers as well several years ago - our local psychologist raved about it, as did some folks on the OCD forum here. Ended up not going, but one thing concerned me: when I spoke with them, they indicated that a participant in their intensive OCD program had to be voluntary (on-board and willing to actively take part). At the time, our ds was so completely overwhelmed with PANDAS symptoms that we never would have gotten him to "volunteer" for this. If your dd is refusing medical care, this could make it tough to get in. I imagine they'll make special accommodations where possible, but you'd want to talk to them ahead of time to make sure this is covered. Also, not sure how much (if any) of this type of program is covered by most insurance plans? If your PANDAS doc or psych will go to bat for you, maybe that won't be an issue....
  17. For our ds, IVIG (3 rounds) alone was only a temp fix until we started treatment dose ("Saving Sammy" dose) of augmentin XR. He's been on that dose for almost 2 years, and only after starting it was he able to sustain progress. Based on our experience, I'd strongly recommend continuing abx (at sufficient dose) to guard against re-infection. I believe Dr. Latimer, for instance, keeps her patients on abx until "PANDAS is a distant memory." Every kid is different... but it's heartbreaking to watch IVIG gains disappear after subsequent exposure.
  18. Our son's symptoms started with the more typical ARF/SC variety (migratory joint pain; rapid, jerky, uncontrolled movements in limbs) and he did have MRI's which were "unremarkable" but complicated by his "artifacts" (movement during procedure). Local ped neuro quickly dismissed the movements as psychogenic (despite the fact that they started after a high fever... sigh). Highly elevated ASO eventually led to an initial SC diagnosis, later changed to PANDAS. We did volunteer for a research study conducted by an awesome ped neuro in Detroit (Dr. Harry Chugani). Dr. C was researching a new type of PET scan, which showed inflammation in our ds's basal ganglia. As a precaution after the ARF/SC diagnosis, we also had electro- and echo-cardiograms. All normal, thank goodness!
  19. Don't know about the OCD Clinic specifically. Do know that we had our ds scheduled (tentatively) for a visit to Mayo when things were really desperate several years ago. Then, while on the phone with the scheduling nurse, she informed me that the pediatric neurologist we were seeing "does not believe PANDAS is a useful diagnosis" and would only treat headache and tics. She said the psychology dept would separately address issues like OCD, sep anxiety, emotional lability, etc. At that point, we decided this "disjointed" approach wasn't worth the time, cost, and hassle, especially since (while waiting for the Mayo acceptance) we had started on high-dose augmentin XR and were seeing dramatic progress. I love Mayo in general. Great rep here in the Midwest. But that "not a useful diagnosis, separate docs for separate symptoms" approach really made us groan. Hope you have better luck!
  20. This was one of our ds's 1st and most disturbing symptoms in the early days, when he was diagnosed with Sydenham's chorea. His limbs would twitch for hours every night, making it impossible for him (and either my wife or I, depending on whose night it was) to fall asleep. For us, the local neuros were useless, unfortunately. MRI's were "unremarkable" and they just wanted to refer us to psychiatrists. This symptom completely resolved with PANDAS treatment (IVIG, augmentin XR). Praying your dd gets relief soon!!!
  21. This describes my experience perfectly! I have Crohn's and have tried many different probiotics while searching for the "right one" since emerging research indicates that they show promise for IBD. So far, they've all made me miserable and I've been forced to discontinue. Still searching for that "magic formula"....
  22. Is this the one you mean? http://www.latitudes.org/forums/index.php?showtopic=6153
  23. Psych meds in general were disastrous for our ds. We tried zyprexa (not an SSRI but prescribed for OCD) and zoloft with bad results. But the benzos (ativan, klonopin) were the worst: like pouring gasoline on the fire. For our ds, every psych med seemed to have an effect opposite to that which was intended. I hope you have better luck, EA! I know that low-dose SSRI's have proven helpful for some of the PANDAS kids on the forum.
  24. This rocks!!! I'll be sending the link out to lots of folks to share it. Beautiful job!
  • Create New...