MomWithOCDSon

Yes, when DS is suffering, his math is suffering, too. Even though he's "gifted," even though he's in advanced math, even though he typically likes math. When he's struggling with PANDAS symptoms, math becomes a bear. He freaks out in class if there's a new concept he doesn't immediately grasp. He freaks out at home if/when he hits a homework problem that either 1) he can't immediately grasp or 2) just "looks" hard and involved, with multiple steps. He works himself up just trying to avoid even getting to the math homework, and his ERP therapist identified this as an "avoidance behavior," and that the mere act of avoidance actually makes him MORE anxious than does just getting down to the homework. So now we have all these "coping statements" jotted down on his desk for him to basically chant when he's struggling, breathing exercises for calming down his emotional meltdown, and other accommodations to help him get through the work. Sometimes I'll help him by writing down the problem(s) as he recites; sometimes I'll just sit by his side and let him explain the problem to me so that he understands it better himself. Some days none of that works, and some days he needs NONE of those additional aids. Honestly, with respect to our DS for whom OCD is the primary PANDAS behavior, I think the avoidance is the primary issue. Because once you "nurse" him over that hump, convince him that doing it is less painful than avoiding it, he can usually get it done in record time.

Even if you didn't have an appointment, you can inform the staff that you're willing to wait for any opening . . . a cancellation, a "hole" in the doctor's schedule caused by a late arrival, a hole created by a quick appointment, etc. If you make it pretty clear that you're not leaving without speaking with the doctor face-to-face, my bet is they'll make room for you. Just give 'em the face that says, "If it takes all day, I've got all day!"

My DS's caseworker at school has a great analogy for this behavior which, yes, I think is common to PANDAS. Our kids are like an empty glass at the start of the day, but little by little, throughout the day, they're taking on the "water" of "dealing." Dealing with anxiety, with stress, with expectations, with restrictions, with smiling when they'd more genuinely cry, etc. So throughout the day, that glass gets fuller and fuller, until it inevitably overflows. Early on in our treatment course, DS's glass would overflow by about lunch time. Then he would make it until he got home from school. Now he generally makes it until after dinner before some "last straw" appears that drives him to lash out, sometimes at the most innane things, too. I know you want to keep the peace, and since her natural tendency has always been to be your solid kid, your "rock," as you say, she's probably less inclined to allow her healing behavior to become "forever behavior," so compromising seems like a good fix. What I think we all have to keep in mind, however, is the fact that our kids are still growing in all respects, including emotionally, mentally and socially, so it's possible that, even without PANDAS, a kid who is solid and always reasonable at 7 could have a turn toward demanding and/or insolent by 10, if conditions are primed for that alteration. And what you think of as a "temporary fix" or accommodation may become a permanent, fixed expectation on their part if it's not couched in "this is a special circumstance" terms. In our house, we do a lot of compromising, too. And we pick our battles. Plus, DS is older (13), so he may be more ready to accept the subtleties and differences in today's situation versus yesterday's situation than a younger kid. But when we find that "giving in" or an atypical compromise is the best answer to a current issue, we try to reinforce with him that we're allowing this particular answer on this particular day because of the particular circumstances (he's had an exceedingly challenging day at school, he hasn't been feeling well today, etc.), and that tomorrow's answer to the same exact situation may be different. That he cannot form habits or expectations around our "rule set" while he's trying to heal because, once healed, he won't be in need of those same accommodations and he'll be expected to act more his age, show respect at all times, etc. Overall, he seems to get it.

I know what you mean about greater levels of flexibility when healthier, with that diminishing during exacerbation or a waxing of the behaviors; we have that too, in spades. And then, honestly, I think we have to pick our battles because it just isn't realistic to try and fight them all at once! So, he's not visibly worried, stressed or concerned? Well, as long as that's to his core the truth for him, then I think he gets kudos for knowing who he is, what matters to him, and what is worth compromising on for the purposes of "fitting in" and what isn't. For the most part, our DS was very much the same . . . up until this year, that is. He was always content to keep his own company on the playground at recess if the other kids were playing ball because he didn't like to play ball, and just surrenduring to playing it in order to be with the other kids wasn't worth it to him. He didn't mind being seen as "different" by his peers, and he willfully participated in self-isolation. He kept to only a couple of good friends, but he didn't even care too much what they thought much of the time; he marched to his own drummer. But at some point in this last school year (he's 13, 7th grade), there's been a shift. Now it bothers him that he's viewed as a bit "odd" among his peers. Now he notices . . . and dislikes it . . . when his behaviors draw attention from his classmates. Now he WANTS to fit in more than he ever did before. And my heart breaks for him because it's hard, and because if he could continue with his original "I don't care what they think" attitude, then his feelings wouldn't get hurt as often. And he wouldn't come home from school extra-stressed because some incident during the day drew him some unwanted attention, or a classmate to whom he's grown attached didn't decide he'd rather eat lunch today with another boy rather than with DS. So, that would be my only concern for your son . . . that his lack of concern won't last forever, and that if he continues indulging in self-isolating activities for too long, it'll be all that much harder for him to find his way into "fitting in" later, and learning to be resilient to the inevitable snubs, acts of thoughtlessness, etc. that are part and parcel of growing up. Then it may be that he will come home stressed because he's discovered now that he does care, that it does matter to him. I also agree with you that now -- the end of the school year -- is probably not the right time to try and rehabituate your DS into having lunch at school or even leaving with the rest of his classmates, especially if the school isn't equipped to support him through those changes. If your DS is otherwise in a relatively "good place" these days, maybe you could tackle one of them with the support of someone "on the inside" but not necessarily the whole school? For instance, is there a trusted, beloved teacher, school psych or social worker who could maybe support your DS leaving on time with the other kids? Shadow him, maybe? Or even contrive to just walk out alongside him, chatting about something of interest to him so that he feels supported and a bit protected? That might be one place to start. I really don't think you have anything to fear, cutting him a break, as you say, while he's healing. But there might be something to be gained by making sure he's aware that you are, in fact, cutting him a break. That he's being given some atypical latitude and accommodations for the time being because he needs them, but that the goal is that he will get healthy enough that he no longer needs them. Depending on how his healing goes, you might want to start having conversations with him about how the plan is for things to be different for the next school year . . . how he will have lunch in school and come and go with the rest of his class, etc. Warm him up to the idea of consistent progression, rather than "comfortable habit," for lack of a better term.

Ditto, EAMom! We have a dog we love who's grown up with DS, and I've been walking around for a while now, worrying about whether or not she could be contributing to the harboring of strep in the house. It's nice to know the odds are against that!

In support of Faith's perspective, I guess I should have mentioned earlier that, because of our DS's pre-existing OCD diagnosis, our protections and positioning with our local school district is a little different than yours also, Coco. I have discussed PANDAS only with the handful of folks at the school who I knew were already predisposed toward supporting us and recognized us as a concerned, straight-forward family without any hidden agendas or axes to grind. Meanwhile, his protections, IEP, behavior plan, etc. have all been afforded him by virtue of the OCD, a condition that is unfortunately far better understood by the academic world at large. Pretty much all of his behaviors they therefore attribute to the OCD, even the occasional meltdowns, attention deficit stuff and other quirks that many of us here more readily associate with and recognize as PANDAS hallmarks. In the end, though, the goal is to get your child the best available academic environment, so does it matter what condition it is attributed to for the purposes of gaining those opportunities in this regard? I know you may not want a TS or OCD diagnosis tied to your PANDAS child necessarily, but maybe the "ends" will justify the "means." And with either a 504 or an IEP, should the condition fully remit at some point, you can have the plans struck, along with all the terminology that brought them into being in the first place. Just another path to consider . . . .

It must be that pesky Y chromosome! Like most of your experiences, my DH is supportive, and if I shove a research paper under his nose and insist that he read it before a doctor's appointment or something, he'll do it, but that's pretty much the extent of it. It reminds me of when I was pregnant and I read everything I could get my hands on and he just waited for me to pass on whatever information I thought he might need as I went along; apparently, that was my job as far as he was concerned. Are your DH's also "authority prone," meaning they tend to take the word of an "authority figure" for gold, even if it doesn't set right with you? All my DH needs to hear is a doctor say X, and he's all like, "Oh yeah, that makes sense!" Even if it runs completely counter to our experience! It takes me to sit him down and point out the inconsistencies in some of the "expert advice" we've been given, or the experiential contradictions we're living through, before he'll acknowledge that maybe an "expert" doesn't know everything after all. I posted this on another thread earlier this week, but it might bear repeating here, too. Dr. K., during our meeting with him last week, said, "The mom instinctively knows something's wrong, and she looks for symptoms to support her feeling; meanwhile, the dad needs to see the symptoms first, before he agrees that anything is wrong." And there's another quote that's stuck with me through the years, too. I can't remember who said it, but it was within the "Chicken Soup for the Mother's Soul" my DH gave me for a Mother's Day gift several years ago: "Having a child is like watching your heart walk around, outside your body." I think it's why we mothers have been entrusted in life with nurturing new life, both before and after it's out in the world, breathing and growing on it's own: with rare exception, we're just better at the nurturing. And that tends to include, at least in our cases, the researching, the worrying, the seeking, the not-taking-no-for-an-answer.

You know, I think you're on to something, there. If Coco will just give up, pack up DD and head for another educational option, all on their own accord, then the school is relinquished of its responsibility, and all the personnel and financial costs that go along with that responsibility! Is that too cynical a view to take here?!?! Move over, Oliver Stone, have I got a conspiracy theory for YOU! We actually had our grade school principal, when we went to meet with her for the third time regarding a particularly problematic teacher in dealing with DS's challenges, who informed us that "You know, the district has an open enrollment policy, and as it is becoming increasingly clear that you are not going to be happy with this school, perhaps you should consider one of the other two in the district"!! Translation: I wish you'd take your concerns and standards elsewhere because you're just a big old pain in my neck. Just pass the buck . . . heaven forbid you actually DEAL with the issues at hand and serve the child's best interests!!! Boy, it just makes you want to dig in and fight like heck, doesn't it?!?! Only, in the situations we're all in, we have to mind our priorities carefully, and sometimes there just aren't enough resources to spare to take on another battle with a brick wall . . . a stupid brick wall . . . a stupid brick wall with plugged up ears and less common "sense than God gave a screwdriver!" (I borrowed that last one from a Sam Shepard play, but it just seems to fit the situation). Wow, now I've had MY chance to vent, too. Thanks!

From your post, I'm not sure who was asking the question or in what context, but . . . Dogs can have strep and/or be strep carriers, just like people, so maybe that was behind the question?

Carol -- Our DS13 was diagnosed with anxiety and OCD for years before we found PANDAS, so we have been through what I will unaffectionately call "the psych wringer." Our psych didn't buy into PANDAS, either, until I continually buried him in research, papers, studies, books, etc., as well as a thoroughly documented, long-term view of DS's personal history. After almost 5 years, he finally came on board about a month ago! Anyway, is your DD taking Zoloft now? Our DS is taking Luvox, though we aren't convinced it is doing anything to help him. Basically, when we began PANDAS treatment (abx) about 6 months ago, we didn't want to change too many things at once, so we left the Luvox in place. One thing to watch with PANDAS, though: SSRI's can be more activating for PANDAS kids than the non-PANDAS population, so if you're going to use them, it needs to be done very slowly, very carefully, and at a very low dose to begin with. There is a paper on this subject by Dr. Tanya Murphy; here's a link. Dr Tanya Murphy - SSRIs and PANDAS Secondly, our experience with Seroquel and some other "big hammer" drugs (antipsychotics, actually) has been pretty dismal, so if that is any point of reference, I would steer away from those. The Seroquel just made DS sonambulent; it didn't help him confront or deal with his anxiety at all. So it was still there when the drug wore off, sometimes even more intense than before.

Another vote here that you arrange for an advocate. I know that there are consultants out there who make a living advocating for families like ours with the school systems, but I also believe there are some non-profit groups who also can lend a hand. We were helped in our IEP process by a friend who's been an educator for 30 years, knows the IEP process and the law(s), knows our DS, and has a reasonably cool head of her own to contribute. So, if at any point in time there's been a teacher or a coach or anyone with whom you and your DD have had a good rapport, you might consider approaching them about helping you advocate. Finally, I'd like to say to both you, Coco, and mama2alex, your child is entitled by law to the LEAST restrictive educational environment available to serve their needs! That is FEDERAL law! So, if your school cannot provide your child with a suitable educational environment, the district is REQUIRED BY LAW to send them to the best available option, and not only that, they are required to do at at THEIR cost, not yours! And you are permitted a voice in that selection process. So if you are looking at expensive private options (smaller classroom sizes, therapeutic services, etc.) for your kids and wondering how you're going to swing it, just know that it will take a fight (because they don't want to withstand the costs, either), but they MUST help your child. Not cage her. Not torment her. Not "discipline" her. HELP her, dagnamit! I wouldn't send her back to the school, either. But I would make sure that everybody and his dog in the district knows that you're NOT keeping her out because you've decided to "go a different way" and have an alternative available to you. Let them know that you're holding her out because you vehemently disagree with the proposed behavior plan, that you find it Machavellian, unacceptable, punitive, destructive as opposed to constructive, etc. Say it firmly, say it in writing, say it thoughtfully and without necessarily pointing specific fingers. Finger the Plan, rather than the people who designed it. Maybe calm, resolved, intelligent insistence will earn you an advocate somewhere in that morass of the school bureacracy, and having a "friend" on the inside could prove to be very valuable.

I thought I read somewhere that spiro is a synthetic steroid?

Pete -- They should know ASO and AntiDnase as they are still relatively common with respect to a "strep throat" diagnosis. And your insurance just may cover it, if the doctor notes a suspicion of strep. Ours did, with the exception of the co-pay. Good luck!

Hi -- We had a similar situation about one month ago now, and our pediatrician was equally insistent: no way could he have strep, no way would a culture come back positive, because of the Augmentin. I actually sort of tried to "sneak" and asked the nurse to do a throat swab before the doctor had even come into the room, but DS balked (hates those things) and she was unable to get a clean swipe. I guess she reported that to the doctor (thanks! ), so then I got the "no way" lecture. I know Diana Pohlman has noted some "breakthrough" strep incidents while kid were on Augmentin, but it was my understanding that this pertained to regular Augmentin, rather than the time-released XR variety. Our DS's behavior has become more problematic recently, also, which makes me think there's a possibility he's had some breakthrough, too. Or perhaps some co-infection or increase in his allergies that's driving his behavioral response. It's hard to know. We're getting his ASO titers and AntiDnase tested again tomorrow, though; Dr. K. seems to think they will still come back elevated, despite the long-term Augmentin XR use. Then what? Maybe we will ask Dr. K. about some azith, as well. Sorry you're going through this. If you can talk your ped or Dr. B., through a phone conference or message, into a round of azith, maybe that's worth a try.

So sorry about the struggles just to be understood! It is SO frustrating, and the people you're trying to get through to really do not understand the extent of their ignorance, which makes it even harder. They pull that NIMH factsheet and they think, "Okay, I did my homework. This is from THE authority." And so, by comparison, they think that we moms are "out there" on some other planet when we talk about our kids and their treatments and their needs; they think we're grasping at straws, trying to explain away our kids' troubles, rather than dealing with them. If karma is real, each of these people will wind up with a similar, irrascible challenge on their own hands, and have trouble gaining understanding and accommodation from the rest of us because they're "merely espousing a theory" and there's nothing in the popular literature to support their positions! I need to ask, though, how is your DS through all this? He's leaving school ahead of the main population, and he's not eating lunch at school? Because he's too anxious for that? Does he WANT to conquer those milestones, but he's afraid to try? Or he doesn't see the need? Is he a stressball by the end of the school day? Our DS is in much the same place. He's in school a full day, but we drop him off early and he has a pass for early entry so that he can get to his locker and get organized for his day before the other kids start storming through the halls, and he still doesn't attend gym class at all. He stays for lunch, but he brown bags it every day, will only sit at a certain table with a certain other boy, etc. Yes, the Murphy article and research identifies problems with activation with SSRI's in children with PANDAS. Yes, psych meds are probably not a great answer for kids, especially long term. So all of this should be carefully considered and approached very cautiously. But if your son is struggling and unhappy with his social situation at school, then that's up for consideration, also, isn't it? IF . . . please note the capital letters . . . an SSRI would ease his anxiety and make him feel more comfortable in his own skin during the school day and other social settings while the PANDAS treatments are in the works, then is it entirely off the table? Please note that, despite the headline of the Murphy article, she does conclude that SSRIs can be beneficial, even in PANDAS kids for whom they have caused activation; her main caution is that they need to be given in very low and controlled doses, with careful observation of their effects on each particular child. I'm not necessarily advocating for SSRI's, but I am suggesting that you not toss the "baby out with the bathwater," either. Your son has PANDAS, and he's being treated for that underlying auto-immune condition, yes? But you're trying to help him live his best life even during that healing and recovery, so anything that can contribute to that without long-lasting negative impact is something to examine, yes? If you do decide to try . . . again, accepting only a very low and controlled dose . . . you may find that your experience is like ours: no negative effects (or activation), but no noticable positive ones, either. But at least you will have tried everything at your disposal . . . . just my 2 cents worth.

Hi Alan --- Two important points that my family has learned from personal experience: 1) a child can "have" strep but appear entirely asymptomatic, meaning, when his siblings had strep, he may have contracted it as well but not developed classic sore throat, fever or other symptoms you'd readily recognize; and 2) as Peglum suggested, "rapid onset" is something that seems to have some relativity in the PANDAS community. While some kids literally go to bed one night "normal" and wake up the next morning with dramatic behavioral changes, others (like my strep-asymptomatic son) show more muted signs for years of various PANDAS-type behaviors, with the major exacerbation (or rapid onset) episode occurring years after they've already been identified as having various other conditions, from anxiety to OCD to TS to autism. Unfortunately, unlike the bear that shares the name, PANDAS is more grey than it is black and white. But it does appear you have sufficient "markers" or signs to investigate further. It will do no harm, and may very well put your son on a quicker, straighter path toward healing. As others have suggested, have your son's titers and immune panel tested, and then take it from there.

Brava, Saidie! Dr. K. made an interesting observation in this regard when we saw him last week. He said the mom tends to "just know something isn't right," and then she keeps an eye open for symptoms to support her intuition. The dad, meanwhile, needs to see the symptoms first, and then he'll agree that something isn't right. For what it's worth, I had a 3-month term of not being on speaking terms with my own mom because she lashed out at DS once when he was 4 and was having an anxiety reaction that he lacked the verbal capacity at the time to explain. Frankly, I didn't know what was up at the time either; they only thing I "knew" was that he wasn't behaving as he was in order to be willful or problematic; he just couldn't help himself. So, I think even "Grandmas," despite being mothers themselves, don't usually get it, either. It's like the intuition just can't make the leap to skip the generation!

Hope your DS is feeling better this morning. In addition to the dye-free Benedryl, I would suggest you ask the pharmacist about a dye-free decongestant alternative that includes guiafinesin. Guiafinesin is best known as an expectorant, but when our son had recurrent ear infections as a toddler, we found that a guiafinesin over-the-counter option was best as it helps break down the thick mucus that can plug ear tubes up, making the secretions overall thinner and easier to drain. It tends to make medicines taste bitter, though, so have some juice handy for a chaser!

Melatonin has been a life-saver for us. We give it in the 3 mg. gelcaps, though I know there are sublingual lozenges for younger kids or those who don't like pills, also. We give it to DS about a half-hour before lights out, and he is out very quickly. Before melatonin, he would lie awake for hours in his bed, unable to shut his mind down sufficiently to sleep. We've not had that problem since introducing the melatonin some 4 months ago now! Happy ZZZZZZzzzzz!

We like it, too, because we can dose it concurrent with the abx, and also because it just adds another form of flora to his gut alongside the bifido and lactobillus in the other probiotics we give him. I also like that we can get it at a reasonable price in 7 billion organism gelcaps at places like The Vitamin Shoppe.

I laughed really hard when I heard this the first time 3 years ago or so, and it still hasn't lost its charm. Enjoy, and Happy Mother's Day! Mom's William Tell Overature

My DS13 is also very enamoured of his video and computer games . . . this is his idea of fun and recreation . . . and when the PANDAS OCD is raging, his gaming can become a major sore spot in our house, as well. In our 7 years with these behaviors, I can say that his affinity for technology is REAL, not strictly a PANDAS or even OCD behavior. But, certainly, when he is less well overall, his OCD ramps up and the games can be more problematic. Yes, I believe it is connnected to the OCD component of his PANDAS, and probably also resides some in that set of ADHD and/or autistic-spectrum type behaviors, as well, where the kid has an uncanny ability to focus on what he CHOOSES to focus on, but a real deficit when it comes to focusing on things not of his chosing, either at home or in the outside world or school. First, he will obsess over which game he intends to play the next day (or that very morning, over breakfast); he will talk nonstop about the intricacies of the game, even when his dad and I make it very clear we've heard enough (Aspberger-like symptom). Then, he will set up these entirely self-imposed parameters with regard to how and when he will play his game. First, he has to get all chores and routine tasks out of the way; then, he needs a "decent block of time" in which to become immersed in the game (usually at least an hour). If we have plans later in the day (a birthday party, the movies, etc.), and the implication is that he doesn't have sufficient time in which to play, he can get very aggravated at the circumstances, and it will take him some time to calm down and either resolve to play in the time he has, or chose another activity. As we have with most of DS's sensibilities over the years, we've learned how to forestall any big meltdowns in this regard, mostly be lots of forewarning, planning and reminding. Warning DS that tomorrow he has a doctor's appointment/swim meet/party, reminding him in the morning of his atypical obligations that might prohibit some play time, etc. Then, he always gets a similar warning before we need to walk out the door . . . a half-hour before, 10 minutes before, etc. These reminders/warnings have helped us to set aside meltdowns, and as his health improves, too, they become less necessary over time.

Hi Pete -- "Welcome" sounds funny under the circumstances, but you have found a very supportive and experienced community here. It certainly does sound as though there may be an infectious beginnings to your current issues, so it is worth exploring. You're probably up against even greater ignorance than those of us with children, however, being as PANDAS, by definition, has "pediatric" in its title, and the medical community as a whole is probably even less prepared to deal with potential adult PANDAS than the childhood version. That being said, there are several people who participate on this forum who believe themselves to have an adult form of PANDAS, and there is a doctor, Dr. Kovacevic in Hinsdale, Illinois, whom I believe has seen some adult PANDAS patients. You might search the pinned threads here and see if you can get in touch with a doctor who would help you through some of the basic testing for your condition . . . ASO, AntiDnase, immune panel, etc. There is also the Dr. Cunningham test for CamKII which might be helpful, though, at present, it is privately funded and may be out of your price range at present. In time, I'm sure one of the grown-ups here with the condition will speak up regarding what's been most helpful to them. As for Straterra, there have been some reports among the PANDAS community that it helps not only with focus, but also with setting aside some of the OCD tendencies. Just as a side note, my DS13 is also taking a non-stimulant ADHD medication, but his is Intuniv, rather than Straterra. Though both Straterra and Intuniv require some time before reaching full efficacy, my son experienced some enhanced attention abilities within less than one week taking Intuniv, and his psychiatrist has expressed that, in his experience, Straterra doesn't work for everyone, so he prefers Intuniv. It might be something to consider if you find the Straterra doesn't seem to be assisting you over time. Finally, having lived with a child who was originally diagnosed with OCD at 6 but is currently moving toward a PANDAS diagnosis at 13, I know that some of the OCD and ADHD behaviors can become "learned" over time; they become coping mechanisms in a world that isn't immediately accepting of these behavioral differences. So I applaud your returning to the psychologist and hope you'll consider some cognitive behavior therapy (CBT), and more specifically with regard to the OCD, exposure response prevention therapy (ERP), to help deal more directly with those behaviors. Even as you work to determine perhaps the infectious trigger for your illness, especially as an adult, therapy will help you confront some learned behaviors and maybe even "habits" that could get in the way of your living your most fulfilling life, including relationships. Continue asking questions and know that you can find some long-delayed support -- and quite possibly answers -- here! Nancy

And to you, too!