MomWithOCDSon

Given the ferocity of the obsession, it sounds to me as though it could be something of a mix/meld of OCD and perseverative thinking that's more in line with some tendencies toward cognitive inflexibility. We experienced perseverative thinking and inflexibility quite a bit during the depths of DS's PANDAS, so much so, in fact, that two doctors gave him a PDD-NOS diagnosis because these are features common of many ASD-type conditions. Have you experienced a more "normal" reaction on DS's part to the Christmas season and all the commercialization that goes along with it when he's physically healthier? I wonder if you "normalized" the Christmas season a bit, if that would help tame the truly seasonal obsession, despite the fact that the media and Retail America pushes it so hard. Maybe leave a couple of Christmas decorations up in DS's room year 'round, or create a new family tradition like "Christmas in July" so that he's not building up steam for nearly 12 months each year, awaiting that real holiday period. Sorry he goes through this, and you along with him!

Thank you for this! I am really looking forward to reading this and finding out what treatment regimen ultimately brought her out of this!

Not to mention the fact that there are so many strains of flu, none of these preventative measures are fully effective. Basically, they make a best guess at which 3 or so strains are likely to cause the most problems in a given season, manufacture a vaccine against those 3 particular forms of flu, and then promote the bejeebies out of it to try and get everyone to sign on to it. Not a fan . . . . . .

Well, like I said, I think Lamictal may diminish the argumentative/defiant/oppositional side of things because it may make him less fixated on his negative feelings behind the behavior.

Our DS utilizes a combination of low-dose Zoloft and Lamictal at present. I don't know about "mood" in terms of the commonplace description, re. depression or anxiety or anger, etc. What the Lamictal does appear to have done is permit DS to "let go" more readily of things that cause him some concern or even angst; it has diminished the perseverative tendencies he had at one point. I have heard, also, that it can diminish defiance and/or explosiveness as well, which our DS has never had a lot of in general. But in helping him "let go" and move on, that has also reduced the argumentative conversations in our house.

Honestly, I don't know. DS has always had some tendency toward GI issues (mostly gas), and his dad also seems to have some general GI concerns, as well, though all sub-clinical. So, since the probiotic seems to be setting those aside for the most part, I guess we'll stick with it for a while. The Renew Life one is a little pricey, but he only takes one of those each day so it won't break the bank, and the sach b. we give him is by Jarrow . . . very affordable. Maybe you could consider a less expensive brand? Or, if he doesn't seem to have any GI issues, you could decrease them or even remove them entirely? Maybe try going to once a day and see if there are any impacts, then once every other day, etc.?

Just thought it would be worth mentioning since this came as something of a surprise to me when I first heard it this past summer during a panel with Swedo, Dr. M., and Dr. L. at the IOCDF conference . . . . Apparently, the real concern with long-term use of abx is not "resistance." It's c difficile. In our case, the other issue would be as follows. Rheumatic fever patients are, as I understand it, prescribed prophylactic doses of abx to the age of 18 or so, in the interest of protecting their heart. So I'm not sure prophylactic doses are at issue, at least not with PANDAS/PANS-savvy docs. But the reality of it is that in some cases . . . Sammy Maloney, my DS and at least 2 other PANDAS/PANS kids that I know of directly . . . it took long-term (2 years), treatment dose abx to effectively push the worst of PANDAS/PANS behaviors aside. To my knowledge, nobody is/has really studied this, and references to such long-term use are generally treated as strictly anectdotal. Also at the IOCDF, Swedo allowed that she would now support 3 to 4 weeks of treatment dose abx for PANDAS/PANS cases based on parental reporting, but she does not feel that longer use of treatment dose is appropriate given the c difficile risks. So, what, if anything, could set aside the c difficile concerns? Making probiotic "prescriptions" as important as abx prescriptions?

Wombat -- Like a lot of things with PANDAS/PANS, probiotic types and dosage seem to be a case-by-case thing. Some people respond best to some, while others respond best to others. Additionally, while "high-dose" probiotics are advocated by some, they can lead to extra gas and/or bloating, so you will likely have to find your own ideal level with a little experimentation. Here're a few tips/ideas from our experience; I'm sure others will add theirs. Don't rely upon acidolpholus, which is a very common form of probiotic found in yogurt, kefir and packaged probiotic supplements like those little "pearls." This organism is readily killed off by antibiotics. Mixed blends work well and may best support your system's balance. Try and space your probiotics 2 hours or more away from your antibiotic dosages for the best chance at having the probiotics survive and do their work. As for how often or how many times during the day you take probiotics, that sort of depends on your schedule, lifestyle, whether you're taking abx once or twice daily, etc. When taking abx, our DS took probiotics 3 times each day. One probiotic we found very helpful was sachrymyces boulardii (?spelling?), also known as "sach b" and/or "s. boulardii." This is a beneficial yeast that helps crowd out "bad" yeast like candida, and it is resilient to most antibiotics so it can be dosed simultaneously if necessary. It also helps fight some abx side effects like diarrhea. I wouldn't worry about brand names like Culturelle or Florastor, especially if they're not readily available where you live. They tend to be more expensive, anyway, and what matters is the form of organism and the unit count. Culturelle is lactobillus g, which can be found in many other brands, and Florastor is sach b. When our DS was on full-dose abx, we tried to give him about 200 billion units daily. We tried more (up to 400 bu's at one point, but he experienced increased gas and was uncomfortable. With a little trial and error, we found 200 bu to be his "just right" level. Now, off abx, he continues to take about 60 billion units daily: a 50 bu mixed organism probiotic by Renew Life, and a 10 bu sach b. This level seems to be a good one for him "post abx." Good luck!

Happy, happy, Harvest!

Sorry. I know how you feel because we've been there at points ourselves. It stinks to see them do so well and then slip back, and the older they get, the more they seem to recognize what's happening, too. That being said, I'll tell you that I think there are some real success stories but some of them have "left" the forum to move on with their lives. Meanwhile, I consider my DS to be a success story, too, but for us it is an ongoing process. And I stick around here because I'm a "diehard fan" and have basically chosen, of all the available support groups and arenas for conversations regarding all things PANDAS/PANS, this venue above the others because I like the variety of voices and experiences I see and hear here. I think one thing we all need to keep in mind is that "Saving Sammy" was not written in the heat of the moment; it was written at least a year or so after Sammy had recovered, and even then Beth allowed that he'd go back to abx when he was at school and realized he'd been exposed. Then, for a couple of years after that, either in a talk I heard her give or in some direct questioning (sorry, it's been a while, so I can't recall the precise circumstances), she allowed that Sammy still took some low-dose meds to help him contend with the remnants of attention deficits, etc. Now, Sammy's something like 20-21? And now Beth can say he's fully cured, he doesn't take any meds, doesn't have any OCD, etc. And I'm sure it's true. But his story, too, is a long narrative. And he's past puberty, he's a mature, intelligent adult who might still come across moments of anxiety, but he recognizes them and knows how to handle them. You might recall there's a chapter toward the end of the book titled something like "A Delicate Balance," and I've asked Beth specifically about that. The chapter and Beth acknowledge that they walked a tightrope for a while . . . that things kept getting incrementally better, but it wasn't a straight line. So, is my DS "cured"? Maybe. I don't know for sure. He's been off antibiotics for almost a year now . . . 10 months. He still has some anxiety. He still has some OCD behaviors. He still takes lots of supplements and a low-dose SSRI. He still goes to therapy. We still deal with OCD/ERP issues at home on occasion, though not daily anymore. And given his trajectory, I have every expectation that he will achieve full balance, maturity and success, not unlike Sammy. I know sometimes it seems as though it will never end, and it gets demoralizing to see our kids keep rehashing things that we thought we'd already brought them through. Just hang in there! And stick with what you known can work/help: patience, consistency, ERP, immune support, etc. The sun will shine through again . . . maybe even today!

Of course there's "proof" that PANDAS/PANS is real; there are any number of papers, including the most recent White Paper authored by Dr. Susan Swedo of NIMH and others. Unfortunately, however, because PANDAS/PANS has yet to get its own diagnostic listing in the Magic Manual commonly referred to by the medical community at large (sorry, I know there's an acronym for it, but my brain is mush today), ignorant and/or territorial and/or lazy doctors continue to refer to PANDAS/PANS as something they have a choice to "believe" in or "not believe" in. I would find myself another developmental pediatrician . . . one who, if not fully clued into PANDAS, at least has an open mind and a sincere desire to seek the best interventions for your child. I would do this in addition to consulting a PANDAS-savvy doctor, as the PANDAS docs are good and dedicated, but their availability and focus likely precludes their ability to fully and continually address all of your DD's developmental needs. Sorry. Some doctors just aren't worth your time and trouble, unfortunately, no matter how heralded they may be in their specialties.

I would think that would vary greatly according to age and degree of functionality. How old is your PANDAS kid?

Just FYI, my DH received a return email from Dr. Jenike. He is involved, and says he has been from basically the beginning! To quote him: I have been trying to help from the beginning. Things are progressing and the media is getting involved. What a mess. You go, Dr. J!!

Okay, I've just sent Dr. McCarthy an email as follows: Dr. McCarthy – I understand you serve as Medical Communications Editor at Boston Children’s Hospital (BCH). I am compelled to write to you because of the situation which has manifested at your institution regarding Elizabeth Wray and her family. I’m certain that by now you’ve been made aware of this case so I won’t go into detail, but this is an appalling situation and does not well represent a medical facility dedicated to the health and wellbeing of children and their families. Dr. McCarthy, my son has PANDAS/PANS. But because of the ignorance and obstinence of my local medical community, he suffered from the condition for more than 6 years without receiving a proper diagnosis or treatment. I don’t know whether to credit that same community’s complacency or over-burdened conditions with the fact that my husband and I were not reported to Child Protective Services or had our son removed from our custody as we fought to get him effective help, but I’m grateful that he was never subjected to a hospital psych ward or forced to endure a harrowing hospitalization experience without me or his dad by his side. Finally, thanks to my family’s resiliency and determination, we WERE able to get a proper diagnosis and treatment, and, as a result, my once horribly ill and dysfunctional son is now happy, healthy and fully functional. Unfortunately, due to ignorance, impatience or inappropriate prejudice, or perhaps a combination of all three, on the part of some members of BCH’s staff, Elizabeth Wray is very likely headed down the wrong road with respect to treatment. But more importantly, she has been forcibly, even if only temporarily, severed from those whom she needs the most right now: her parents. This is a travesty of the hospital’s responsibility and role, and the situation needs to be reversed immediately. Furthermore, I urge you to seek out the latest, greatest information regarding PANDAS/PANS and to help drive BCH toward education of its staff and professionals regarding this condition. The National Institute of Mental Health, Columbia University Mailer School of Health, Massachusetts General (Dr. Dan Geller), Harvard Medical School (Dr. Michael Jenike), and the International Obsessive Compulsive Disorder Foundation (IOCDF) are only a few of the prominent institutions which have come to not merely recognize PANDAS/PANS, but to treat it, research it and advocate for patients and their families. Please, please, please do not let this situation go unattended. Our local pediatrician, who eventually helped us despite having a healthy skepticism herself, ultimately told me that she felt that her oath to “do no harm” took precedence over her own ignorance and skepticism regarding this condition. Taking Elizabeth Wray away from her family and dismissing the family’s recorded medical history regarding PANDAS/PANS and medical treatments/interventions effective in its treatment is counter to that oath; it is, in fact, doing Elizabeth harm. Thank you for your time.

All they need to do is take a peek at their Facebook page! That should give them an "idea" of the fury they're up against!

I've just sent emails to WCVB and WHDH in Boston, alerting them to the story in the event they haven't yet been contacted. I don't know if it would help if others jumped in and suggested the same story, but . . . They're easy to find on-line: WCVB WHDH

I'm hard-pressed at the moment to know exactly what to do next. I know that Beth is representing the parents and has a ton of resources at her disposal. Knowing for-profit medical institutions, it will be the negative press that will have the greatest impact on them, I expect, and that is underway even as we speak. I find it ironic that one city can be the home of both an institution that's so violently opposed to PANDAS/PANS and ones (Harvard Medical School and Mass. General) that not just accept but, on some level, embrace the whole concept! As I said, DH has written Jenike earlier today, and hopefully we'll hear back from him. For pete's sake . .. Jenike could just walk down the street and into the heart of the situation if he feels it's appropriate! Crossed fingers he feels strongly enough about PANDAS/PANS to intervene in some way. We'll see! If anything else manifests, I'll be sure to let everyone know. Thanks, EAMom, for helping coordinate the press effort; I wish I had a BCH story to share, but short of that, if anyone in the media needs yet another appalled voice, feel free to count me in!

Folks -- I shouldn't have posted the list of names/titles at BCH previously -- my bad. Sheila's edited it, as is appropriate for this forum, and she was kind enough to post it as a link. But if you're having trouble with the "Leadership" link for any reason, PM me and I'll gladly share! Sorry ACN and Sheila . . . I'll behave from now on!

DH just emailed Michael Jenike to see if he can do anything to help. He and Jenike had a good discussion during the IOCDF this summer, and he said Jenike kept encouraging him (and others) to email him. This seems like a perfect use (rather than abuse) of such an invitation!

Jim -- I do think there is probably a histamine component to a lot of our PANDAS cases, and Dr. T., I've read, also thinks there's something to the histamine connection. Some of our kids have actually been prescribed anti-histamines (both prescription like Vistaril and OTC such as Pepcid), and some of us have begun using the OTC H2 blockers and seen good results. We've been using Pepcid -- sometimes regular strength (10 mg.) and sometimes maximum strength (20 mg.) with our DS for several months now and see a positive impact on both behavior and another auto-immune condition (eczema) as a result. If you search the forum, you'll find other threads on the topic; I believe one family's doctor actually prescribed 40 mg., twice each day, of famotidine (Pepcid) for their PANDAS child. I haven't looked into the "turning on or off" immunity via any of the histamine blockers or antagonists, and I wonder if Pepcid might be capable of the same action as Tagamet, possibly without some of the Tagamet side effects. Dr. T. seems well-suited to answer our questions!

Here's their mailing address: By Mail: Boston Children's Hospital 300 Longwood Avenue Boston, MA 02115 USA And here's their leadership: They also have a Facebook presence. I'm not really into FB, but I know a lot of people are. Should we post on their page? Something neither threatening or malicious (FB would probably remove anything shrill or potentially slanderous, anyway), but openly questioning their tactics?

I'm sure a number of you have also received this latest news from Beth via email. My DH has already posted the story to the IOCDF Facebook page, but we need to reach out as far and wide as we can to see if we can help this family get their daughter back. Beth's message is as follows: It is with a heavy heart that I inform you Elizabeth Wray was placed in the temporary custody of the State of Massachusetts this afternoon. This is a picture of Elizabeth's parents, Carrie and Jay. They did absolutely nothing wrong. They are caring, lovely people whose daughter was diagnosed with PANDAS/PANS by two different physicians, and they diligently sought appropriate treatment for her. The Wrays were greatly comforted to know how many of you wrote me to express your shock and support to last night's email. They have asked me to publicly share their story because they are going to need your help to get their daughter back. Please reach out to any media contacts you may have.

Emily -- Beth Maloney also had a postcard campaign a year or so ago . . . nice, heavy-stock, postcard-sized "awareness" bullet points with a photo of a child on it. You might check Beth's Facebook page or the Saving Sammy website.

Melanie -- We haven't experienced any NAC "poop-out," nor have I read of any cases of it, but I suppose that doesn't mean it couldn't happen. Have you had other post-biofeedback issues that you can recall? Maybe do a little journaling and track things for a bit, especially after the biofeedback sessions? Sorry!

Oh heavens no, I do NOT have it all figured out, by any means! And I should buy stock in Clairol! Fact is, even when you're stubborn as an old goat (present company included), time will inevitably teach you one or two things, and like LLM said, I've been at this a very long time now! I also have had the very great benefit of some wonderful teachers who genuinely wanted to see DS excel and they shared their experience and wisdom with me, as well as having been poking around on boards like this one for a few years. I screw up . . . almost daily. Let's face it . . . once you think you've got it figured out, your kid goes through another phase and the strategies that worked so well a few months ago don't work anymore, or he's contending with some new issue that you've not encountered before. Dare I say that it's frequently a "cr@% shoot"?!?! Hang in there, though, and you'll figure out what works for your kid!