MomWithOCDSon

I would think it depends on your coverage. Dr. K. happens to be an "in network" provider via my group insurance policy (BCBS of Illinois), so one would expect any standard visit/consultation/evaluation by him would be covered to the extent any "in network" visit is covered: co-pay and then, in my case, 80%. I think the trickier coverage issues have to do with actual PANDAS treatments, like IVIG.

So sorry to hear how tough today has been for you, and for your daughter! It may be that Omnicef is not the right abx for her, but don't give up hope yet. We have seen many episodes of backsliding with our son, and I know how demoralizing it can be. You wind up questioning yourself, questioning the abx, questioning the PANDAS, etc. Especially when you see almost immediate improvement when starting the abx, it's hard to remain patient during this "saw-toothed" recovery pattern. But if the Omnicef is working, she will more than likely bounce back shortly. And if she doesn't, then you'll know to see your doctor about another abx or a larger dose of Omnicef. Hang on!

I would put down money my husband is the 60's version of PANDAS. He and his 2 brothers traded around repeated cases of strep throat in middle school and says that, shortly thereafter, his own anxiety issues kicked in. Currently, he has a mild but clinical case of OCD himself and remains very "sensorily sensitive" with respect to clothing, environment, etc.

Just from our experience, it's not the abx. Don't have experience with steroids, but I suppose that's an option. How are his potassium levels? Got any bananas in the house? Seriously . . . our DS12 used to get leg "pains" a lot, and when he went to the ER with his first panic attack and had the million dollar work-up, they found his potassium levels were a bit low. So we're big on bananas around here now!

Meg's Mom seems to have a great handle on addressing these sorts of OCD behaviors, and I would agree that in utilizing most of the same techniques with our son over the last 6 years, we have made significant gains. With every new exacerbation, though, reassurance questioning is one of the first behaviors to resurface. One thing suggested by our new therapist just this past week, however, is that instead of responding with something along the lines of "I'm not answering an OCD question" or in some other verbal response pointing out that his question is, in fact, borne of the OCD rather than of healthier, logical, cognitive thought, we should ask him, "Is that an OCD question?" Then it is his responsibility to determine the "validity" of the question, recognize it as OCD or demonstrate that it is, in fact, a legitimate, logic-based inquiry, and then move forward. I guess by our automatically stamping it as an OCD question for him, he was being absolved of some of the accountability for recognizing it for what it was all by himself. As a result of this new technique over the last 6 days (in conjunction with abx), he's nearly completely ceased from engaging in this behavior at all anymore! I guess maybe we were "feeding" it without realizing it. In thinking about it, this latest technique may work well for an older kid, but not sure that a preschooler or even grammar school kid would be cognitively prepared to make use of it . . . .

I would mostly echo what Vickie, SmartyJones and LLM have said here. Our DS12, particularly when younger, was horribly anxious about being taken anywhere and left by us, and it seems that no matter where we are in terms of controlling all the other PANDAS behaviors (mostly OCD in our case), there's a thru-line of anxiety that he and we just have to work through. The separation anxiety does seem to be one element that can eventually be "outgrown," though, at least in our experience. Here's a few things we found that helped: 1. My son was more "clingy" and emotional with me, so whenever possible, his dad would drop him off, rather than me. 2. If possible, try dropping him off a little early, before all the ruckus of all the other children arriving gets started and when he might be able to get a bit of undivided attention from a favorite teacher or helper; that can help the transition. 3. Also, if possible, see if the teacher can have a "job" or task awaiting him that is his and his alone in the classroom; knowing that there's something that he can do right away, and this is "his" can help switch his attention to the school day ahead rather than lingering with you. For instance, our son's class had a class pet (a hedgehog, if you can believe it!), and DS's job was to give it fresh food and water every morning. Just having that routine task helped him say "good-bye" at drop-off. 4. While we'd initially thought having a photo of our family or the family pet handy in his cubby would be comforting and re-assuring for him, it actually did the opposite and would trigger anew his anxiety at being away from us. If you've been asked by the school to contribute items of this sort for decorating his cubby or the classroom, you might want to consider removing them until he is better settled in and comfortable in the surroundings. I will say that, in our case, our son eventually stopped demonstrating tremendous anxiety over our leaving him at school; however, he tended to substitute his attachment with us to an attachment with one of the teachers who might take particular interest in or care of him! As he has grown and matured, however, he's been able to "spread" a bit of that reliance around so that he not only looks to a favorite teacher or two, but also a trusted friend or two, when he arrives every day.

Maybe your immune system is more mature and can meet the challenges more readily? Do you know for sure that you're NOT catching it? Do you get cultured quickly? What if you catch it but you're able to fight it off quickly and only the level of your ASO titers would really reflect a recent infection? Is it possible for people to be periodically asymptomatic? My DS12 has always been entirely asymptomatic, so who knows how many times he's had strep and we just didn't know. But, initially, in the early school years, he would bring home a school memo about a case of strep having been identified in his class, and within 3 or 4 days, I would come down with a bad case of strep throat, while he remained -- to the untrained eye, anyway -- A-OK (never knew at that point to associate an uptick in his OCD with strep exposure). But in the last few years, even though there's been more exposures at school according to paperwork coming home, neither he nor I have actually come down with the classic symptoms of strep. Did my immune system finally identify it to the extent that it could fight it more pro-actively? Or maybe my system is coursing with ASO titers also, keeping the strep itself at bay, and I'm not predisposed in some way to OCD or TS so I'm not suffering from other ramifications of the immune system? All very puzzling! Okay, so I just added to the questions, didn't I? Anybody have answers?

All very interesting . . . My DS12 frequently has stomach issues . . . gas, bloating, occasional diarrhea. And he is very sensitive to feeling "over-full," though he rarely has the opportunity to really overeat. I always thought it was just anxiety, and then his OCD would lock onto it, turn it into the mountain from a molehill that it tends to do with just about anything it can grasp hold of, and he would really have to work hard to shake being consumed by it. The abx have helped, since all of his OCD behaviors are waning again after 6 days back on course. I will say, however, that the Augmentin XR at 1,000 mg. doses (2 per day) seems to be much more tolerable to him than the regular Augmentin 875 twice daily was. Maybe he's more sensitive to the clauvanic acid, since that's higher in the regular than in the XR? So, is Prevacid an antacid? Is it similar to Prilosec? Any side effects or combo-effects to be aware of?

I think we ALL need to be reminded! Sometimes it's hard to see the trees for the forest, you know? And now that my son is improving, he's pretty hard on himself, commenting about how he should be doing more, focusing better, etc. Still got enough of that "OCD guilt" hanging around to try and prevent him from reveling in his improvemen sometimes. Sounds as though you've come a very long way, so kudos to both of you!

Congratulations! Does he save ALL his school papers, too? I've had a devil of a time getting my son to clean out his folders and part with old quizzes, worksheets, etc., even when he's long since ended any use for them. His gifted teacher at school says that this is common for "gifted" kids, but I think it's sort of low-level hoarding activity on his part.

Used to think SpongeBob was the stupidest concept ever and couldn't imagine why my friends let their kids watch it. Then one day my son tuned in, and the slightly subversive humor managed to crack the whole family up at one point or another in any given episode. Just goes to show what lengths we parents will go to in order to give our kids a little peace, and to find some ourselves!

I agree, but it's a start. 25% sounds pretty serious and will get attention. Yeah, I'm sure you're right; 25% is statistically significant. I just wish it didn't also correlate to an estimation that 75% are therefore "standard" OCD or TS or whatever and therefore the symptoms can be managed, but the disorder not cured. Cynical practioners (like our son's psych . . . I'm not letting up, but he's slow to come over to the Light Side) will take harbor in the "conclusion" that it's more likely your child does NOT have PANDAS than it is likely that he DOES.

I have an updated "gratitude" list to add today for another few small battles won. As of this morning, I am grateful: 1. That our pediatrician agreed to another 2 full months of Augmentin XR 2,000 mg. daily, if needed (prescriptions in hand!). 2. That my son was singing as he got ready for school this morning and announced that he's actually feeling more like a "regular kid" again! 3. That he added another class onto his school schedule beginning today, so he's only 2 classes short of being back to attending a full school day! 4. That I found this forum where I'm able to learn so much in one place! Thanks!

Firstly, I agree with Earnest Family about melatonin. It has been a great help with my DS12, who would lie awake in bed or get up multiple times to go to the bathroom in the 2 or 3 hours after being sent to bed, before he would actually fall asleep. The melatonin works like a charm! So much so, my husband and I have added it to our night time routine, as well! Have you checked the list of doctors here on the forum thread to see if there is a PANDAS-savvy doctor in your area at all? Or checked on line to see if there's a DAN doctor in your area who might be more familiar and more willing to investigate and/or treat PANDAS? If both of those are dead-ends, what about a phone consult with Dr. K.? From what I hear from other families, phone consults with him are decent substitutes for actually traveling to see him.

Wow, I am a slow learner! During exacerbation, my son, too, seems to turn to TV more often. I never thought much of it because he always seemed to have a "reason" for it . . . he was bored with his computer games, finished his book, etc. But he did watch dramatically more, of his own chosing, before the abx really started to have an impact. Now he's back to being engaged with his books, his video games, just engaging in conversation, the computer . . . because he can focus better? Thanks for the lead, Dut. Now I need to be aware of the "TV barometer" myself!

We got it, too. Beth Maloney had sent me the paper on the mice study itself a week or so ago. Frankly, I wish that percentage wasn't quoted as low as it is. 25%? I've got a sneaking suspicion that's a very conservative estimate!

Yes, a special edition of Scientific American. Still available at bookstores and on-line, typically. We were able to download that 2007 edition with the previous "Infected With Insanity" article in it, so I would assume this one will be availble, if not now at least soon, as well.

Scientific American is a magazine you can get at just about any well-stocked bookstore, like Borders or Barnes & Noble. They are fairly protective of their copywrights, so while you can also buy an entire issue on-line from their web site for, I think, $7.95, what they make available for download is a protected PDF version that's essentially too large to email via most servers, uncopyable, uneditable, un-highlightable, etc. We subscribe, but this edition hasn't yet reached our mailbox.

My son is 12 and in the 7th grade. We began with a 504 Plan in third grade when they begin the state standardized testing in order to permit him to take those tests "untimed" so as to avoid the test anxiety he experiences when he feels "rushed." Every year we reviewed the 504 and would add things to it and modify it in keeping with his needs. Mostly, it was about allowing him longer to change classes without penalizing him or marking him tardy, stuff like that. The latest exacerbation began at the end of last school year -- around late April -- and despite a fairly extensive 504, he really wasn't getting all the accommodations he needed. So when school started up again this year, we elected to move to an IEP, primarily so that he would have a case-worker on site, along with a school psychologist, to turn to in those moments that he was overwhelmed and needed some immediate intervention. Ultimately, before we began high-dose abx in October last year, we had to pull him out of school for about a month because his anxiety was at an all-time high. He was school-phobic, but honestly, he was basically agoraphobic; EVERYTHING triggered some anxious response from him. The school was obligated to one hour per school day of homebound services, but they initially had trouble finding someone "suitable" to take on the tutoring; that being said, we were guaranteed retroactive time, dating back to the initial request. Still, in the end, my husband and I did 99% of the home-schooling during the time that he was unable to attend classes. We were fortunate in that we both have somewhat flexible work schedules and the academic work is not especially challenging for our son, once he gets past the "avoidance" behaviors the anxiety brings to the table. We also work with a private therapist, and since schoolwork and homework are big triggers for our son, he would take his books and assignments to therapy sessions and the therapist would coach him and teach him some anxiety management tools. The therapist also worked with the school for design and implementation of the re-integration program for his return to school. He began returning to school in late October, going only one class per day; this first class was his "resource" class, conducted by the special education teacher who is also his case-worker. Luckily, this guy is an absolute God-send and very knowledgable about OCD behaviors, anxiety, etc. With his help, our DS12 has been able to add on one class at a time for the last few months, and he is now up to attending 2/3 of the school day; he adds yet another class later this week. He still has his moments, and he turns to his caseworker or the psychologist in those, plus he works really hard at managing his anxiety during the day in front of his peers, so the incidences of meltdowns at home at the end of the day, usually over homework, have increased since his return. Still, he is managing well overall, and we continue to encourage and praise and coach. We're also very fortunate in that the school has allowed us to be very slow and gradual in his return. As for what his peers think . . . this, surprisingly enough, hasn't been much of an issue. In our case, the reality of it is that he's been a bit "odd" in some ways since first grade, and most of these kids have known him since that point in time. So while the attention from the special ed teacher and his absence from class now and again may invoke some questions, he has not been "abused" by anyone over those issues. And, thankfully, the support he's gotten from us, the handful of teachers who really see and encourage his potential, and two steadfast friends who've seen him through even the rockiest of his moments, I don't know that he would care what anyone else thought, anyway. Except in the heat of the meltdown, he's somehow managed to maintain a strong sense of self and self-worth, and I think this carries him through. Honestly, in terms of peer trouble, his more palpable issue seemed to be previous to this latest exacerbation, when his accommodations allowed him to retake tests or arrive to a class a moment or two after the bell rang. Some of his friends and classmates were jealous that he got to abide by a different set of rules than they did because they didn't know about or understand the depth of his challenges. But since the exacerbation, the friends have become more familiar with how he sometimes struggles with even simple things, like being on time, and the grousing about "unfair" have entirely come to an end!

You might be thinking of Inositol. There is an older thread here (2 weeks or so) on this topic, and LLM here on the forum had a lot of info. Let's see if I'm adept enough to post a link to the thread . . . . . Inositol

thanks for that referral to the ocd chicago website. so what does your son do about it if he does that with a math quiz or some other situation that he's in lock-down? Because he has an IEP, the teacher generally will give him an opportunity to re-test at school when it can be worked out, or lately, they've been sending the test home with him to take at home. Because his OCD also has a scrupulosity component (i.e., he's perpetually guilt-ridden and "compulsively confessional," so he's basically incapable of cheating), they trust him and us to take the test fairly, at his own pace and in an environment more comfortable for him. I will say, since the high-dose abx, he hasn't had this situation occur. It will be interesting to see how the upcoming state testing goes this coming March, as that has always been problematic for him in terms of these "just right" issues, particularly the "Extended Reader Response" essay-type questions.

I'm wondering, too, if we should -- by word of mouth -- encourage others in our childrens' daily sphere to make gentle mention of behaviors we might not recognize as "odd" because we've been raising them since birth. My son was 6 before a prototypical OCD behavior -- excessive hand-washing -- surfaced. But when I look back at his medical records and earlier "hyper-sensitive" behaviors, I feel convinced that his PANDAS onset was at about age 2.5. When he was finally mis-diagnosed at 6 with OCD, I called his former preschool teacher when he was 2-3; she remains a friend to this day and had taken special interest and care with my son when he was in her classroom. I gave her the news with the lead in, "You're never going to believe this, but L was just diagnosed with OCD." She was silent for a moment, and then she said that, honestly, she wasn't horribly surprised. Then she noted again for me how L always had to have his cubby ordered in a certain way, how he was reluctant to touch some things in the classroom, etc. I asked her why she'd never made a bigger point of these as being "atypical" behaviors and she said because she's not a doctor or a psychiatrist and didn't see any cause for alarm . . . she just knew through her 10+ years of experience with 2-3 year olds, his behavior was "different." I know a lot of us bristle when others mention things about our children sometimes; I certainly have in the past. But I really wish that teacher/friend had encouraged me to look into my son's behaviors back then. We might not have arrived at this most recent very tough period. Not that I'm blaming her or any of the other teachers, babysitters, friends' parents, grandparents who kept their thoughts to themselves; I'm sure it's hard to know when it's the right time to bring something like this up, if ever. But we are parents of just one, with no children before or after via which to measure the true reasonableness of his behavior, so we were really in a tough spot, I think. What about you? If one of the children in your playgroup, or that you chaperoned on a school field trip, displayed behaviors that set off alarm bells in your head, even if you don't know the parent(s) well, would you say anything? Or is this stepping out of bounds?

I have to say, in our limited (3 months') experience, the meltdowns have been the most positively impacted by the antibiotics. While some of the other behaviors have come and gone, the abx has definitively reduced the number of meltdowns we see, as well as the length, duration and ferocity of the ones our son still experiences on occasion. Hang tough, and keep a journal. Odds are that you'll begin to see a pattern of diminishing rages, meltdowns, frustrations and freak-outs.

I completely agree with and echo your sentiments regarding ERP and its possible assistance for many kids exhibiting OCD behaviors. Like you, we were dealing with OCD well before we had any thought of PANDAS, and were it not for ERP and CBT, our son's life from ages 6 through 11 would have been far more difficult. And now that he's 12 and on high-dose abx, the ERP is helping him confront some behaviors that are both a.) likely lingering or even possibly "learned" through years of coping without the help of abx, and b.) troubling him now while the abx goes to work but has yet to reach full efficacy. I can understand a reluctance, particularly if PANDAS was confirmed for a family right off the bat, to turn to "mental health care" and potentially be subject to that labeling, when the evidence is clear that the genesis of the behaviors is purely medical and needs to be treated as a medical (immune) issue. That being said, the kids come first, and if ERP helps them build a skill set that can help them now, alongside the abx, and through a future exacerbation, then we're properly empowering them as fully as we can to meet the challenges. Especially since I've been introduced to PANDAS and the array of potential treatments to address it . . . . I say, bring it on! Leave no stone unturned!

Awesome! Thanks!