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MomWithOCDSon

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Everything posted by MomWithOCDSon

  1. In reading through the whole story, I certainly think BCH needs to be held accountable, as well as we parents needing to be wise and measured as to where we go and how we present ourselves. All that being said, though, don't you think that Boston DCFS needs to be held accountable, as well? Shouldn't we be picketing them, too? Conflicts of interest, failing to do adequate background, omitting meaningful information and interviews from their reports to the court, etc.?! I mean, REALLY?!?! That almost smells like collusion with BCH!
  2. Oh, and our friend Roger Kurlan is also in on this latest nugget of wisdom; he's accredited as the "Principal Investigator" of the "Tourette Syndrome Study Group."
  3. I have to say, I am always so impressed (NOT!) when a paper authored by someone (in this case, Singer), constantly refers back to previous papers by the self-same author (Singer), as though those references offer some sort of impartial support or corroboration! ChrissyD was kind enough to forward me a full copy, and I count no less than 9 such references. Reminds me of a similar nay-sayer paper authored by Stanford Shulman in which he repeatedly quoted himself from previous papers. I guess the pressure to publish is such that these guys have to keep doing it, even if they have nothing new to say.
  4. It sounds familiar , and in this respect, I don't think our kids are all that different from "normal" kids. How often, pre-PANDAS, have you heard, "Oh, little Janie is such a darling girl! And SO polite!" from one of the other moms in your circle, or a teacher, when you're the one who gets little Janie's temper tantrums over a dinner menu she doesn't like or being told it's bedtime. PANDAS exaggerates the devilish side of the behavior set, for sure, but it's really something of a blessing that she's keeping it together better in the outside world, isn't it? Our therapist once explained it like a glass of water . . . our kids start the day with an empty glass, and each little episode during the day that calls upon them for tolerance, resilience, flexibility, anxiety-quelling, etc., puts another drop of water in the glass. Eventually (likely by the end of the school day), the glass gets topped out, and then it can't help but spill over. And we on the homefront usually get the brunt of the tsunami. Hang in there!
  5. I agree . . . I don't think there is any one PANDAS body type. My DS was very slight . . . almost petite . . . until about age 8, at which point in time he started to fill out. Since then, I have described his growth patterns as almost "Christmas tree-like;" he grows out, then up, then out, then up. So he'll get heavier, and then stretch that new weight up over a taller frame, and repeat the process. We did start SSRIs at that same age (8), due to a "regular OCD" diagnosis and prior to getting support and intervention for PANDAS, and I do feel that his heightened level of anxiety prior to serotonin support contributed to his slightness in the early years. I'm also not entirely convinced that the SSRIs didn't contribute to weight gain, though the literature (and the doctor) state affirmatively that the ones we've used do not (statistically, anyway).
  6. Powpow -- Thanks for that link (aealliance.org)! I've never heard of them before, but they've got links to some great research papers that certainly support the link between autoimmune and brain dysfunction! Many thanks!
  7. Amen, Smarty! If this guy spent just one HALF the energy he expends on refuting PANDAS on coming up with verifiable answers, then he'd earn some respect from me. It baffles me, the sheer waste on trying to shore up one's own dated, out-researched and poorly supported position!
  8. For those who are newer and don't know my DS's history, he was on Augmentin XR (amoxicillin + clavulanic acid) for nearly 2 years, fighting his way back to his "normal" from his worst ever exacerbation. We weaned off those abx almost two years ago now, and he's done well . . . no further exacerbations and no significant illnesses in the meantime, either. This fall, he's fought off two colds, the latest one of which was big, bad and long. Head congestion, chest congestion, laryngitis and cough. No fever, though, and no sore throat. Friday evening, he complained that his ear hurt. Complained again intermittently on Saturday, though a decongestant and ibuprofen seemed to handle it for him. Woke up Sunday and said that his ear hurt now more than ever, and we could see red around his ear, behind his ear, and stretching down his jaw line. Still no fever though. Hello MinuteClinic! Diagnosed with an ear infection and given amoxicillin 875 mg. oral, 2x daily, as well as steroid ear drops. After one day of abx and ear drops, he said he felt significantly better. Was able to go to school for the full day both Monday and today, and when he got home today, he was back to his old self . . . perky, happy, and thrilled to be facing a long holiday weekend. So . . . clearly no issue with antibiotic resistance here. Kid is responding exceedingly well to regular old amoxicillin after two years of taking its bigger, badder cousin! I think I might just have a "regular" kid with a "regular" immune system on my hands . . . finally! Crossed fingers, anyway!
  9. Just so long as it wasn't "Murder She Wrote"! :-) So happy for you! Well and long deserved!
  10. Using a decongestant with guaifenesin (generally used as an expectorant) was one essential for us when our DS suffered from constant, recurrent ear infections at ages 2-3. It tastes bitter (even in the children's formulas like Robitussin, etc.), so we hid it as best we could in juice. But because it thins the mucus significantly, it can help the ears drain better and prevent the build-up of fluid in the ears from sitting there longer and harboring more and more infection. Good luck!
  11. Since she seems to think that the antibiotics already did the job and wants to move on to psych meds, I would ask her to retest the titers. If they are still high . . . or even potentially higher than before . . . perhaps she will agree that a continued course of antibiotics is appropriate. Dr. Swedo has stated a number of times that it is the direction of the titers demonstrated by testing and retesting, as opposed to a single reading, that can serve as an indicator of PANDAS. Dr. Swedo also now agrees with longer courses of antibiotics (3 weeks to 30 days) as opposed to the shorter (10 days) courses she advocated for in the past. All that said, many of us have found that much longer antibiotic courses . . . several months, sometimes even years . . . have been most effective in treating PANDAS in our kids. It is a rare "standard" pediatrician who will agree to that course of action, however, and Dr. Swedo has stated her own concerns about creating c-diff with such longer courses.
  12. I posted, and then it said that my comment had to be reviewed by a Moderator first. Possibly, as it was critical of the article's wording, it won't ever appear. Oh well . . . I tried!
  13. Melatonin is also neuro-protective and a glutamate modulator. It's been seen to be helpful in controlling epilepsy and other seizure disorders thought to be tied to excess brain glutamate and/or malfunctioning glutamate receptors. You can Google "melatonin and glutamate" and find a number of related research papers, etc. Here're links to a few: http://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2006.04228.x/full http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0046732/
  14. I think the author/headline writer of this article needs some additional education, no offense. There may well be some points of commonality . . . more likely, IMHO, many kids diagnosed with ASD actually suffer from autoimmune dysfunction akin to PANDAS/PANS or, in fact, identical to PANDAS/PANS . . . but to put them together in a headline like that, as though they're one in the same, is a disservice to both the ASD and PANDAS communities. We continue to fight for identity and acceptance, and while there's much each community can learn from the other, to conflate them entirely doesn't appear like a wise path. I've posted a comment. Perhaps some others of us can do the same.
  15. We have used a clock, and we have used a timer, as well. But I think the only real value either of those has is if DS agrees to certain time commitments for his bathroom tasks, and then he's held to them. In our experience, the mere notice of the "passing of time" provided by the clock or the timer didn't have any practical meaning when the OCD behaviors were roaring, because the OCD was in full command and basically dictated that time had no meaning, no power. That if the bathroom tasks took all night, that was the way it needed to be. It was everybody else on the "outside" telling him that the clock was giving him meaningful information that was wrong and causing a problem for him. ;-/ On the other hand, once we sat down with DS in a moment of calm and came to agreement about how long a certain task should take, and what the incentives and/or disincentives would be for sticking to the agreed-upon times, THEN the timer was a definite help. Good luck!
  16. What is his current dose? He has PANDAS, doesn't he? Depending on what dose he's on now, an increase may NOT be the right thing for him, as PANDAS/PANS kids are frequently hyper-sensitive to SSRIs.
  17. Klee -- I absolutely can relate! You just have to keep holding onto the faith that by staying strong . . . by making the OCD the enemy and loving your son . . . you're doing the right thing for him in the long run. He WILL stop asking you for those reassurances . . . the compulsion to do so will leave him when his OCD doesn't get the satisfaction of your playing along. It is tough. It is horrible. It is painful. But it is for all the right reasons. So cry if you need to, and cry with your son and give him a hug and let him know how much you love him and that your "hard side" is aimed at the OCD, not at him. You'll get through this. Many hugs!
  18. Hi! You're definitely NOT "nuts," and I encourage you to dig in deep. If your pediatrician is open and intellectually curious, perhaps you can enlist her help in the meantime/during the absence of openings among some of the PANDAS/PANS specialists; that's what we were able to do, and it definitely helped us out. Among the pinned threads here, there is a host of materials . . . research papers, doctors' accounts, etc. that you could download and share with your pediatrician. I might also suggest you get a couple of copies of "Saving Sammy: Curing the Boy Who Caught OCD" by Beth Allison Maloney. It is a true story (biography), written by a mom about her son, and she provides information in the book about the course the illness took, symptomology, treatment protocol ultimately prescribed for Sammy, etc. This book was a key in my being able to secure a course of treatment from our local ped because, initially, she was concerned that she didn't have a protocol for treatment, and she'd never seen another "PANDAS child." Reading about Sammy and seeing all the similarities between he and my son helped her, I think, cross that bridge between "crazy internet mom" and our having a legitimate concern. When it comes to psychiatrists/psychologists, I would be wary. While CBT (ERP) can be a very helpful tool for helping our kids address the OCD behaviors, few psychs are well-versed in PANDAS/PANS and could potentially prescribe meds at dosages which would be inappropriate for your son and could potentially make things worse, as opposed to better. In addition to the pinned threads here on the forum, I would check out the International Obsessive Compulsive Foundation's web site (www.iocdf.org). They have a page specific to PANDAS/PANS with information you can print out and take to providers, and they also have a "Find Help" page that might give you some more information on psychologists and psychiatrists in your area that not only treat kids, but are also PANDAS-aware. Good luck, and hang in there!
  19. Who prescribed the 5-day abx trial for your DD? Can you secure a longer-term prescription from that physician while you wait for an opening with one of the specialists you've mentioned? I'm not certain, but I don't believe Dr. L. does phone consults.
  20. We found that, unfortunately, it took a little bit of time for our son to "normalize" to the Augmentin; after that, it didn't bother his tummy as much. I echo what the others have said about a good probiotic, though; very important! If diarrhea is part of the problem, I'd recommend sach boulardi (Florastor is one name brand) in particular. It's known for being effective against that and because it is a "good" yeast, it is fairly impervious to antibiotics and isn't readily killed off while your child is also taking abx. Good luck!
  21. Even if it requires a drive, Dr. Tanya Murphy at the University of South Florida is your best bet. Good luck!
  22. Congratulations! What great news! Well worth a celebration!
  23. I'll just add that, based on some information and a particularly vocal (and seemingly well-informed) forum member's posts back in the beginning of our PANDAS journey nearly 4 years ago now (wow!), we began a "high-dose probiotic" regimen with our DS. He was on antibiotics at the time, so it seemed like a good idea, and we were mixing the organisms up, so "overdoing" it via one strain or another didn't appear to be a problem. We used a fairly expensive blend from Renew Life, along with FloraStor and Culturelle, and we were up to over 200 billion units daily. But DS just seemed to do better -- feel better -- on a lower dose. So once he was functional enough that he could articulate how he was feeling, what his gut was like, we started cutting back. Found that he was less gassy, less obsessed with respect to his digestion (what he could eat, what he couldn't, when he needed to use the washroom, when he didn't) on something like half that dose: around 100 billion units per day, again, still of a mixed variety. I will say that, unlike LLM, we never saw any particular behavioral responses, though now LLM's careful monitoring of her son's response has me wondering if perhaps my DS's higher level of "concern" over his tummy wasn't increased OCD rather than any real physical manifestation of discomfort. Hmmm. At any rate, a few months later, the family that had previously been a frequent and vociferous proponent of massive probiotic doses began to post some other information/findings with respect to its child, with some prominent and troubling medical gut issues identified and requiring interventions. SO . . . that was one lesson in many for me that, however well intentioned, however well-informed, however experienced, interventions undertaken at significant magnitudes on the basis of anyone's (blogger, writer, parent, teacher, even therapist or doctor) indication is best done so with considerable thought and caution, if at all. While I realize there's some merit in "Extreme times call for extreme measures," one should be mindful of the potential for extreme consequences as a result.
  24. It is probably stating the obvious to say, "The younger, the better." Still, based on our own experience, I am far from convinced that older children are more difficult to "cure" because of any kind of permanent "brain damage" or anything of that ilk. My son likely suffered from the age of 3. He was diagnosed with "regular OCD" and treated with therapy and SSRIs beginning at ages 6 and 7, respectively, and we didn't successfully acquire a PANDAS diagnosis or treatment until he was 12 and had his worst exacerbation ever. Augmentin XR brought him back from the brink, and over time, helped give him back his life. We didn't rely solely upon the medical intervention, however; he worked hard with ERP, and we continue to support his functionality with therapy, supplements and a low-dose SSRI. Similar to Kimballout, I feel certain my son will contend with some residual issues for some time to come, if not permanently. But I don't feel that's a result of "brain damage." Rather, it's a result of the neural pathways he built for contending with his anxiety and OCD all those years to the extent that some of his behavior has become almost habitual. He designed rituals to help himself cope for all that time prior to our finding PANDAS, and shaking them after 6+ years is really tough. Some of it is like breathing for him . . . they've become a part of who he is. But that is a far cry from where he'd fallen at 12, when he became so ill he was entirely dysfunctional. He couldn't sleep, couldn't eat, couldn't walk, couldn't talk, couldn't shower, couldn't learn, couldn't play . . . couldn't do anything. Institutionalization was next on the options list, had we listened to the conventional doctors we'd been relying upon for the previous 6 years. But we couldn't do it . . . thank God! And then, thanks to "Saving Sammy," we found PANDAS and abx. Within a few months, he was back in school. And now, 4 years later, he is happy, healthy, excelling in school, sleeping wonderfully, hanging out with friends, looking into colleges, etc. He's not 100% OCD-free, and I'm not convinced he ever will be. But he will be able to live in the world, to interact successfully with it, to live independently. And he still might eventually beat even the more stubborn, hanger-on OCD, too, as he matures emotionally and mentally and finds more reasons and rewards for summoning the resolve and courage to chuck the last of those behaviors in favor of the better things in life. In the words of Winston Churchill, "Never, never, never give up."
  25. Could NOT agree with you more! We actually had one psych tell us that OCD is one of the most widely, deeply and lengthily studied and understood mental health condition, despite the fact that 1) they still haven't identified a cause, 2) haven't identified any long-lasting medical protocol (meds tend to lose effectiveness over time, so their only answer to that is to switch you to another med), and 3) frequently dismiss or denigrate any preliminary research regarding potential legitimate causes and/or triggers (such as autoimmune). My dad used to say that such tendencies is one of many reasons they call it "practicing medicine:" 'cause they're "practicing" on YOU! I completely get that no one can know everything, so, on some level, a degree of ignorance or naivete, even in one's chosen field, might be expected from time to time. What I don't now . . . nor will I ever . . . get is how so many doctors can express absolutely no intellectual curiosity, or feel any responsibility to stretch themselves beyond their standard prescription pad, to help when they see something that is obviously out of the ordinary, out of the "box" of any specifically defined disorder, etc. It is infuriating! Thanks for opening up the vent! :-)
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