MomWithOCDSon

Unfortunately, I don't think ANYONE "makes the rules." There is no single protocol, no single definition, not even a single dosage for anything , whether it be IV or abx. And they wonder why we parents get frustrated and temperamental?!?! Given everything I've read, honestly, Swedo is the last of the "experts" I would trust to have an accurate treatment response. I know she "birthed" PANDAS, but her stringent criteria and narrow breadth of study and experience in the trenches results in a too-quick dismissal, in my opinion. It would be terrific if she was more in tune with up-to-date experiences and trials, especially as she has the NIMH next to her name and title, and I think Diana P. and others are trying to bring her along and keep her informed, but it is a slow process. Dr. K., I know, claims to have treated the greatest number of PANDAS patients (500+), and so he claims to have the most experience and the most knowledge as to what "cures" versus what doesn't "cure." But his protocols don't match up with Swedo, Latimer or Dr. T., and, thus far, Sammy Maloney's "cure" seems to stand alone in terms of and abx-only protocol (though I'm hoping that IS a viable answer for my son, I'll admit). I think I've mentioned this before, but I'd like to lock all of these "experts" in a room and tell 'em to work it out/figure it out, and then come and treat our kids in a clear, understandable, logical, consistent way. Utopia! Most of them will be at the AutismOne conference in May; what say we rope-a-dope 'em and get 'em to confer?! I'm only half-kidding, really.

No, I don't think it is standard or typical, though one would think it might be very helpful, especially if "read" or "analyzed" by a well-versed doctor.

So, another potentially exciting supplement to consider adding to the regimen! But should I be concerned about interactions with other supplements and/or meds? Anyone giving this along with some of the other supplements with similar and/or additional benefits (NAC, inositol, Vitamin D3, B-complex, etc.)?

Thanks, Peglum!

We're all just one, big happy family, we Anglophiles!

When I went after this article via the link, I got a "404 Error" and could not view it. Anybody have an actual copy of the article or maybe an alternate link? Thanks!

My father's family is Scottish (Stephenson and O'Connell); my mother's family is Irish (Hudson, O'Fallon). On my husband's side, it's nearly entirely German, though. I'll be interested to hear what's up!

Just two things quickly . . . I've received emails on Saturdays from Dr. K., so I feel certain he will get back to you. Also, living in the area myself, I feel pretty confident in telling you that, probably pretty similar to Iowa, we're pretty well prepared for snow storms and very few businesses, schools, etc. shut down in the face of a storm. Ice is the only real threat around here, and I don't think it's supposed to get especially cold. Dr. K.'s offices are in well-traveled areas off major highways, and the plows and salt trucks will be on top of things there. Good luck!

How 'bout the days (decades, really) that stomach ulcers were attributed solely to "stress" and "worry"? Then they discovered that they are actually caused by bacteria and badda-boom-badda-bing, ulcers are entirely curable! Honestly, if you read some more general articles like the "Infected with Insanity" from Scientific American Mind a year or so ago, you start to think that inflammation in the brain could be the cause of SO MANY odd ailments and behaviors, if only the medical community would look instead of instantly packing you off to the psychiatrist for antidepressants, SSRI's, etc. What if there IS no "regular OCD" or bi-polar or TS? What if all of these instances are caused by the brain's reaction to infectious agents (bacterial or viral), and if we could get to that root, none of these "chronic mental illnesses" would remain either chronic or mental? I know it's a stretch, but since most of these "mental illness" labels are descriptions of sets of behaviors anyway, and not really diagnoses involving physical anomolies actually detectable in one's brain or brain stem or whathaveyou, it seems possible. I do think, though, that there is probably a genetic predisposition or immunology component to this, as well. In just the same way that some folks react to various viruses and infections quickly and violently, while some may remain perpetually asymptomatic, it makes sense that what might induce these behaviors in some doesn't in others. Which would also go some distance toward explaining why you often get told things like "OCD can run in families."

Thanks, Vickie, for bringing us Diana's message here. I think it's something many of us needed to hear.

How hard would I push? Probably pretty hard, but you may need more data in hand, too. How old is your son? Have you had any of the immune testing done? I'm sure you've read here that the titers testing is not definitive; it's just an "easy" point of reference that can get things kicked off for doctors who're not familiar with PANDAS but feel they can take steps based on a test that reveals something elevated out of the "normal" range (my son's pediatrician did). I think following Buster's chart and/or keeping a journal of your son's behaviors will be very helpful, especially if your doctor is a good listener. But some of the other immune testing (lots of threads here regarding specific tests) may help, as well. The tricky thing may be that what you currently describe as "not REALLY bad" may get worse with time, with each new exacerbation, if untreated. Please understand, I'm not wishing that on you; it's just that this has been our experience. Our DS12 was diagnosed with OCD at 6 and we didn't find or try PANDAS treatment until his latest exacerbation (at 12) when frankly, it was find an answer or have him committed, it had gotten so bad. Prior to that, the "waxing and waning" all doctors will tell you comes with OCD territory had been mild enough and managable with the help of therapy and certain SSRI's (though not all). But this last time, his behaviors went off the charts, and none of the "conventional" OCD treatments worked any more. Four months on abx, though, and he is about 85% back to his old self!

Hang in there, Smarty! I know it's heartbreaking because we've been through similar circumstances ourselves. But it's wonderful that the school is there for him, too, and supportive of what you are trying to do in terms of getting him back into the groove. He'll make it, and he'll feel more and more confident with each passing day that he not only survives, but even finds moments at school he actually enjoys! When you pick him up, you can highlight the positive and praise his progress . . . he'll continue to get better. You know those "Chicken Soup for the Soul" books that were very popular a few years ago? My husband, for one Mother's Day, bought me "Chicken Soup for the Mother's Soul," and there was one quote in there I'm constantly reminded of: "Having a child is like watching your heart walk around, outside your body."

I think you can split it as long as you take it at the same time, but not if you take half now, half later. Yep, that's what I read in the GSK materials on XR. They provide the split line in the XR just for that purpose: breaking the pill in half if it's too big to get down in one piece. But both halves have to be consumed simultaneously.

We, too, are enjoying pretty steady progress. DS12's contamination fears were very prevalent here, too, but had not progressed to the Lysol/glove stage (though if they'd been available to him, who knows?!). He still struggles with some of that, but he's managing it all much better, without the fits and meltdowns over dirt or germs or whatever. We've got him in ERP, too, to help him confront some of that. He's back in school full time now, which is one very tangible sign of recovery, as he couldn't manage a single class period before! Memory doesn't seem to be a problem, but focus can be at times. Have you tried any of the ADHD non-stimulant meds, like the Straterra Sammy used? DS12 has been taking Intuniv (another non-stimulant ADHD med) for about 3 of the last 4 months, and he reports increased ability to focus while in school. Homework can be a struggle for us, as well; at first it was math, but he seems to have turned the corner on that. Now it is writing and drawing; it's never "good enough." And he gets hung up on how long the paper/poem is supposed to be, how complete the information is to be included, etc. Therapist says its the "OCD perfectionism" hanging on, and we just have to keep muscling through it. Since our son was never quite at Sammy's level of dysfunctionality (at least I don't think he was, though it was pretty bad at times), I'm hoping we won't need a full year at the top XR dose. I'll follow Beth's lead and let his behaviors be our guide, I guess, so long as I can keep the pediatrician in our corner with the prescriptions! Congratulations again on your progress, and continued strength and good luck! We've already sent Sheila our story, so I'm sure you'll have a great one to tell, too!

Hey Worried Dad -- Writing a novel, are you? Seriously, how is your son doing? We are on the same "Saving Sammy" Augmentin XR path, I believe, with our DS12 and continue to see improvement at 4 months on the abx. Are you nearing a point of prophylaxis? Do you know what dose you will attempt to step down to, if so?

Maybe we're all a little touchy. Generally speaking, this forum has been a "safe haven" where we could go and trade experiences, ask for support, etc. whereas, out in "the world," we're frequently met with, "No, your child is just OCD/TS." Or "PANDAS isn't proven." Or "PANDAS is controversial, you know." This is a place where we could query, share, plead, exhort, etc. in safety. There are some here with medical and/or scientific backgrounds who post more technical and/or scholarly items and responses, and there are some here like me who are strictly parents seeking help and support. But I think we all see the value in each and every one of the forum's participants so it feels a little dicey when posts are removed. I won't speak for anyone else, but I've never seen the forum rules, nor have I at any time been concerned that either I or anyone else was in violation of them. I just know there are some posts I instantly warm to, and others that I don't. For myself, I keep circling around to the whole "personal responsibility" issue. There are a lot of opinions here . . . some very strong, some less so . . . and lots of advice of all ilks. I can choose to follow any and/or all of it willy-nilly, I can use it as a jumping off place for more indepth research of my own, or I can ignore it altogether in favor of my own convictions or advice I find more valid from my own medical professionals or other sources. But that's my call and my responsibility, and I don't have any problem whatsoever with others posting in opposition to my own stance. Nor do I mind doctors or professionals posting offers of assistance. Thinly veiled solicitation? Maybe. But the offer of assistance in this instance was pro bono, and none of us here was born yesterday. We're not naive enough to believe that any professional can provide unlimited assistance at no cost, so I doubt any of us would've taken any offer up without that understanding in mind. If posts were removed because they were strictly against the rules, or because the poster him/herself thought better of it after the fact, then I suppose we need to 1) get clearer on the rules ourselves, and 2) move on from indulging in paranoia. Like I said, I, for one, am a little touchy because the outside world is generally not especially accepting of what my family is going through. So even the inference of "judgment" here as to what is acceptable or unacceptable for the members of the forum to read, is a tough pill to swallow. But we've swallowed bigger and tougher, so here goes . . . . .

Folks, I stand corrected. The moderator (Chemar) did not remove any topics. Apparently that action would have fallen to the webmaster or administrator because the posts were against forum rules. Good call, LLM, to ask for a post or link of those rules again. Like many of us, I have my suspicions as to why those topics were deleted, and I have an opinion as to the necessity of that. But let's see what the rules say.

Hi Michael -- I have to say that I don't know about biaxin or the treatment for adults with respect to PANDAS. We do, however, have a good bit of experience with Augmentin and our DS12 with PANDAS, so I thought I would at least post that experience for you. Our son has been on both Augmentin 875 mg. and Augmentin XR 1,000 mg.; yes, all Augmentin is a combination of amoxicillin and clauvanic acid. It's my understanding that the clauvanic acid ratio in the XR is actually lower than with regular Augmentin, which is sometimes an issue for children given their weight, dosing, etc. There is also some indication that the XR is more effective with PANDAS because it is time release and stays active in the system longer. With my DS12, I can tell you that the Augmentin XR has been gentler on his system. As for duration, I honestly don't know. Just based on some of the other posts here, it seems there may be some basis for a correlation between age at PANDAS onset, length of time between onset and treatment, and then duration of required treatment for cessation of symptoms. I've seen that some young children quickly diagnosed with PANDAS may be "back to themselves" with as little as a 10-day dose; but older children like my son who's onset, I believe, was at about age 6 and he went until age 12 without a PANDAS diagnosis or treatment, he's on his fourth month of Augmentin XR. In conversations with Beth Maloney about her son, Sammy's, recovery, she's advised me to let DS12's behaviors be my guide in terms of how long to continue the abx treatment. Since he is improving but still has his struggles, we're sticking with it for now . . . . Good luck to you!

I think maybe the moderator removed some topics, unfortunately.

In our experience, I would have to agree with you that 10 days is not a sufficient time period in which to judge the effectiveness of the abx. If it is any help, I will tell you that what you've described with your DS10 is almost identical to our experience with our DS12 early on in the abx dosing, with the exception of the fact that he is almost entirely OCD in his behaviors; his tics are verbal only and fairly minor. Like you, we saw more "changes" than tangible offsets of behaviors toward the end of a 10-day cycle. Initially -- within 36 to 48 hours -- he had ditched most of the contamination concerns that had crippled him for months, but toward the end of the 10-day abx cycle, those contamination behaviors were back, not quite full force, but noticable again. He continued to be volatile, but he could move past a blow-up more quickly than before the abx. In our case, we initially tried abx for 3 weeks and then we thought maybe they'd done all they could for him and we pulled him off; ALL the behaviors were back full force within 8-9 days after his last abx dose. Sorry to say, though, that we took some additional convincing so we repeated that process yet again (3 weeks of abx, then off when we perceived that his progress had "plateaued"), and again, within 8-9 days off the abx, he was decompensating dramatically. So, now he's been on abx for almost 4 months straight, and I will tell you that the progress DOES continue, although sometimes at a very slow, almost inconceivable pace. And it "saw-tooths," also, with two steps forward and one step back in some regards. With DS12, there are still some contamination issues hanging around (seems to be the hardest to kick, and his therapist, interestingly, says that when contamination concerns rank among the highest in OCD behaviors, it is usually a signal that the behaviors are entering a waning phase), and he still has a meltdown now and again around his most vulnerable triggers (homework, boredom, sudden changes in schedule). Yet the meltdowns are fewer, more quickly recovered, and less intense overall. If you feel as though the abx have had any impact at all (was he sleeping well before the abx, for instance?), then our experience would suggest that you stick with it and give it more time. Track even the more subtle shifts in behavior, and the more ones, as well. You might see a pattern emerging that had previously gone unnoticed in the midst of all the chaos. Good luck!

Awesome! Another Success Story for us to recall in those tough moments in our own experiences! Thank you so much for hopping back into the forum and posting! All the best to you and your family in your travels! Sounds exciting and a wonderful opportunity for your son, especially!

Chemar -- Thanks for making us all aware of the article in Latitudes; irrespective of our personal feelings about the actual content, few people would dispute the overall benefit of getting the term "PANDAS" out in the world at every opportunity. Worried Dad -- I couldn't agree more with your sentiments, and I know you didn't intend them as shots at either ACN/Latitudes or Chemar. Every day we face the cynics, the critics, the nonbelievers, and those individuals, unfortunately, find safe harbor in the dated and incomplete semantics, research and theorizations included in some of these references. The last thing those of us in this fight need is a point of reference that is cloaked as "current" or "modern," but, in the end, only parrots dated, limited and limiting perspectives on the topic. I, for one, don't understand why the NIMH is so slow to update its information, particularly with items like the Columbia mice study out there! Sheila -- We PANDAS folks are very sensitive to the "controversial" label because we hear it almost every day, and unfortunately the collective ignorance about this disorder is aided and abetted by continual references to dated information like the NIMH's. My son is one of many who, by Dr. Swedo's criteria as stated in the existing NIMH materials, would not meet PANDAS criteria; how then, does one explain his almost miraculous recovery while on long-term antibiotics, when all manner of psychiatric meds and therapies failed to bring him around? This forum is SO meaningful to us, and we very much appreciate being provided this outlet for sharing, learning and querying. Since ACN participates in hosting this forum, perhaps future publication of any issues related to PANDAS could include consideration of the "temperature" of those of us active in the fight, however anecdotal. So, to that end, thank you also for the opportunity for sharing our stories. I have a feeling you'll be hearing from a number of us! Finally, with respect to the PANDAS forum participants "diagnosing" or at least encouraging folks in the TS/Tics and OCD categories to consider PANDAS, I can see how that might be troubling for some, though I'm not entirely certain it warrants complaints to you or ACN. This is an open, public forum and no one is forcing anyone to participate here. When I first joined, it was a matter of days before I'd more or less identified the folks who would very readily "diagnose" my son and in effect prescribe various treatments and/or supplements, those who would share their own experiences but without any particular prejudice in terms of what I "should" do, and those who tune in more or less just to ask questions, rather than attempt to answer them. It is my right and privilege as an adult to sift through all the personalities, information and advice here and decide what to take away and what to leave behind. And I can always just exit the forum, too, if the tone is something that rubs me the wrong way. And I would presume that if anyone is being "pressured" via PM, ACN or its moderators would address that issue on a case-by-case basis. Many of us on the PANDAS forum are so enthused, so happy, so grateful to be seeing the light again based upon pursuing PANDAS treatments, that it is hard for us to refrain from jumping in there and shouting from the rooftops, "PANDAS is real and my kid is living proof that you DON'T have to live with debilitating OCD/TS/Tics forever!" And that probably eekes out in the forum at times. Ideally, we'll all act responsibly and seek, maybe, to open doors for folks who might benefit from considering PANDAS in their particular instance, without devaluing their individual experiences and keeping in mind the possibility that perhaps they are not dealing with PANDAS at all.

I'm so sorry! This sounds like a horrible beginning to your day! So, she was fine yesterday but today turns this 180 degrees? Remind me, is she currently taking antibiotics? Have you ever tried or considereda "calming med" for times like these . . . risperadol or clonanzepam, something like that? Or, maybe you'd be more comfortable using a "natural" response, something like valerian root? I only have DS12 -- no other kids -- and I know has his manic times affected me and my husband; I can't begin to imagine how tough it would have been with siblings in the mix! I think you did the right thing, especially as your mom was willing and seems to be at least knowledgable about handling your daughter during these times. You have to do what's right for your other kids, too. Does her rage subside when she's away from home? Or in the company of her grandmother? Or when she's not competing for attention and gets her grandmother's undivided attention?

My husband and I take magnesium as part of a mineral supplement, but I've never thought of giving it to my DS12. What is the magnesium supposed to do for your son? And were his levels abnormally low before you began the supplement?

My son is also on Augmentin . . . has been since October. We haven't seen any of the bruising at all, however, either before or after the abx. As for side effects, everyone seems to respond differently. Other than the petechiae, have you seen any of the potential side effects in your daughter? I've heard others report nausea and/or vomiting with Augmentin, but that has not really been our experience. While on regular Augmentin, DS12 reported some nausea and had some diarrhea, though we were never entirely sure whether it was the abx or his OCD-oriented "nervous stomach." When we switched to Augmentin XR, pretty much all of the side effects went away; no nausea, no diarrhea. We also pump him with probiotics, though. Have you tried one of the time-release abx, like Augmentin XR or Moxatag? Strictly anecdotally, those seem to be a little easier on the gut. If she is experiencing any additional side effects, Azith may be a viable answer, since that also seems to work for a lot of these kids.