MomWithOCDSon

Mandy -- First, let me say that I have no idea what occurred yesterday that made the teacher reach for the "Special Ed" option. Was your DD disruptive? Or did she have a lot of trouble staying under control or managing anxiety? Was the school informed before you arrived of your DD's diagnosis and potential need for some accommodations? Had you met the teacher before school began and given her the lowdown? Maybe this is just a case of "shell-shock" where the stage wasn't entirely set for your DD's first day in school. Or maybe this teacher does not feel prepared for any "special cases," either your DD or anyone else's. That being said, if your DD does need some accommodations (does she have a 504 Plan, perhaps?), I would really advise you not to dismiss "Special Ed" out of hand based on the title alone. I think as parents, our first response to Special Ed is "Heck, no!" A lot of my prejudice about it stemmed from my memories of what Special Ed was like when I was in school . . . what kind of kids were there, what the situation was like, etc. Also, like you, I knew my DS to be very intelligent; in fact, prior to this last exacerbation, he had been in the school's Gifted Program. So I just couldn't see how Special Ed could accommodate his academic level, or how it would add anything or bring anything to the table in terms of his PANDAS/OCD. But here's the thing. Today's Special Ed isn't like it used to be when we were kids. Today's Special Ed in the mainstream school isn't a room full of kids with profound physical, health or even mental disabilities; most districts now have entire off-site classrooms for those more profound cases. Today's Special Ed class is more likely to have 3 or 4 ADD or ADHD kids in it, maybe a couple of ODD kids, a kid with dyslexia, a kid with high-functioning autism, a kid with Aspberger and, in our case, my PANDAS/OCD kid. And he doesn't sit in this Special Ed class all day. He's in the regular cirriculum, and even attends his Gifted Education classes, just as he did before his Special Ed designation and the implementation of the IEP that technically put him under the purview of the Special Ed department. All of his academic and social needs are met, and 90% of the kids in the school have no idea he has anything to do with the Special Ed department whatsoever. BUT . . . and for my DS, that "but" is a huge one . . . his IEP gives him a caseworker on-site that he can go to when he needs a shoulder to lean on or someone to help him chill out. This caseworker also helps him navigate his way with other teachers who are more ignorant about DS's condition and less accommodating. That IEP also gives him one class period each day where he can go to the caseworker's room and catch up on any classwork he fell behind in, or take a test orally instead of written, or get a head start on his homework. It also gives him two weekly sessions with the school social worker, therapy of sorts and, once again, a chance to decompress during the day. So, all that's to say, I have no idea if your DD is really a candidate for or would benefit from being part of your school's Special Ed program. I just want you to know that a) it isn't the stigmatizing situation we knew as kids, and it does have some benefits for some kids, without removing all the opportunities they should have for stretching their academic and social wings. Final note: the law guarantees each of our children the highest level of education possible, with the least restrictions possible. So, inside Special Ed or out of it, your DD is entitled to participate in every possible way that she can. You just may have to throw your weight around a little to make it happen! Good luck!

Joanne's idea sounds like a great one, though, I would be VERY surprised if you are able to get the school psychologist to actually provide CBT during school hours. Our school psychologist, social worker and special ed teachers barely know what OCD is, let alone how to treat it. We lucked out with one special ed teacher who had worked at a therapeutic day school prior to coming over to our district, so he actually knew what OCD was and how it could manifest. But even he was very ineffective at implementing CBT techniques on the spot; rather, he had a tendency to try and calm DS by enabling some of the compulsions (cleaning things), just to keep the peace during the school day and prevent DS from spinning out. Additionally, I think it would be a very rare school that would provide your child these services without an IEP in place, as the IEP is the function by which the school gets government funding for providing special therapy services like those. If you can work with your child's teacher(s) with CBT-based reward systems and programs for managing the behaviors, just the shere practice at management should help at least some. Our DS13 has had a 504 for OCD since 3rd grade, and moved up to an IEP last year. With the 504, he just had accommodations and, on a case-by-case basis, we were able to get his teachers to work with us and him with some of the CBT-oriented processes. With the IEP, meanwhile, he gets two social work sessions each week, but one of them is a "social group" session with two other boys who also have some issues, an effort to enhance each of their abilities in terms of social interactions, and the other session is pretty much just an opportunity for DS to talk, bend her ear, etc. After years of CBT and ERP therapy, I've come to appreciate that this therapy isn't easy stuff and it can take a special person to do it correctly. It would be a terrific surprise if the school social worker has the necessary skill set, but I would also think that would be a very rare case, as well, since her focus is not OCD kids in particular, but also learning disabilities, ADD, ADHD, ODD, etc., you know?

We're using Augmentin rather than azith, so I can't speak to that, and as for vaccinations, I think it will depend upon the pediatrician and your relationship with him/her. The IEP, however, is something I'm very familiar with. The quick answer is, yes, an IEP covers excessive absences. Basically, an IEP classifies your child as Special Education, and Special Education trumps everything, including more absences than the district typically permits. So it would cover you there.

Oh, I SO agree!! At the beginning of our PANDAS journey (last October), our DS was taking 200 mg. of Luvox. He was such a mess, we couldn't discern that the Luvox was hurting him; then, once we started abx without changing the Luvox, and he began to improve, we left the Luvox in place because we didn't want to change anything else while he was on an upswing. I read the paper by Drs. Murphy and Storch, also, but at that time, we didn't see any signs that the Luvox was having a negative impact. But when the upward trajectory of his improvement waned while still on the full-strength abx, we decided to try taking down the Luvox. First we decreased it to 150 mg., and DS improved; then we decreased it again to 100 mg., and he improved yet again. When we decreased it again to 50 mg., there was an uptick in his OCD behaviors, but it's really difficult to isolate whether or not that uptick was related to the change in dosage or other triggers. After meeting Storch at the IOCDF conference and attending that particular session, I found out that Zoloft had been determined to be a preferred SSRI among the "comorbid OCD" pediatric contingent. Additionally, I had talked to the NIMH about potentially enrolling DS in the riluzole trial, and the doctor heading that trial said that Luvox was contra-indicated with riluzole, so if we were to continue to have interest in entering the trial, DS would have to be transitioned to a different SSRI. Coincidentally, at our next psych appointment, the psych indicated that he didn't feel the Luvox was helping DS much, and would we want to try something else, at a low dose (in keeping with my concerns and the Murphy/Storch paper). I asked if we could try Zoloft, so we began 50 mg. of that just one week ago today. The standard talk is that it takes SSRI's anywhere from 2 to 6 weeks to reach full efficacy; frankly, today was the first noticably "improved" day here in our house for the last 10 days or so. His attitude was improved, his ability to push past some of the obsessive thinking was sharper, and he moved through his daily tasks faster. Is it the Zoloft? I don't know; I'm just glad he seems less bogged down by the OCD today! I'll add that we were one of a few families here who've had previous success with SSRIs, prior to our having discovered PANDAS and DS's strep connection with his OCD. He took a low dose of Lexapro for more than 4 years with only positive results in terms of the OCD behaviors. I look forward to hearing how your DS fares on the heels of the intensive ERP work and the IVIG. I think it is SO cool to have come across a therapist who knows both PANDAS and OCD!! That's awesome! And seeing her be successful and helpful must provide some comfort and inspiration for your DS, too.

Joan -- WorriedDad was able to convince Dr. K. to try Augmentin XR at 2,000 mg. per day for his son following IVIG. Why don't you give it a shot and see if he will prescribe the same thing for your DS, at least on a trial basis? It seems worth a shot! I agree with Meg's Mom and Vickie about the OCD, also. We see "stutter steps" a lot with our DS13, too; one day we're convinced he's conquering it, and the next day will have some decidedly tougher moments, either with behaviors we'd thought he'd left behind, or a new "worry" or fear that pops up, like a cousin to another one. But in the big picture, he continues to move forward. We've been working intensively with ERP with our DS this summer, also, though not away from home; he has one or two long sessions with an ERP therapist each week, and then we have daily exposure homework and one or two "exposure field trips" each week. Our thought was that we would use the summer for more intensive work at the OCD to better equip him for the coming school year. So, yes, I think all the pressure to persevere and do the homework and face the fears . . . in our case, almost relentlessly . . . ups the anxiety a bit and he can get just flat out worn out with it all. Hang in there! You're moving forward, moving on!

Yes, we think so. About 3 months into his abx treatment, our psych added Intuniv, a non-stimulant ADHD med along the lines of Straterra, to DS13's meds. Within a couple of days, he reported improved ability to focus and pay attention at school, and it seemed to help throughout the school year. Over the summer, however, we've faced some increasing behavioral symptoms, despite remaining on high-dose abx (Augmentin XR), the Intuniv, and the supplements we've had him one for the last several months. We think a lot of it has to do with the loser, less structured summer schedule that gives him too much time to ruminate, feeding some of the OCD obsessive thoughts. We also think he may have been re-exposed via plane travel and/or public places while on vacation. At any rate, during the increased OCD behaviors/ramp up, I couldn't say that the Intuniv was having any impact at all. It it was, it wasn't noticable because all the other behaviors were taking focus. It has left me thinking that, yes, perhaps an ADHD med in the waning phase or an exacerbation is helpful . . . helping push them just "that much" more into being able to focus more on what they're supposed to be focused on, rather than the OCD distractions. But sort of similar to the thought that ERP/CBT is of less efficacy in the raging phase of an exacerbation, it seems to me this sort of medication might have a similar profile. Also of note: at the IOCDF conference, in a session with Dr. Eric Storch and others on treating kids with OCD and other comorbid conditions (including ADHD and ADD), the entire panel, along with a number of practitioners and researchers in the audience, agreed that when OCD is at the forefront of a behavior manifestation, then the "OCD comes first" in terms of treatment, and the other comorbid things next. There was even some discussion that ADD and ADHD aren't really stand-alone concerns with an OCD kid, that's its just another manifestation of the obsessive thinking/distraction. That being said, everyone agreed that some ADHD meds may be of assistance, and that the non-stimulant options (Straterra or Intuniv) are probably best for those with OCD behaviors because the stimulant meds (Ritalin, etc.) can send 'em into the stratosphere. Finally, I did ask Beth Maloney about the reason for Sammy taking Straterra . . . whether or not he actually was thought to have ADHD, or if it was being used more in response to the OCD behaviors. She replied that it was more about the OCD, giving him that extra support in focus to stay tuned into what mattered in front of him, rather than being distracted by some of the extraneous compulsive thoughts. I guess he's off the Straterra now, though.

We purchase the Norwegian Gold Super Critical Omega in a 7:1 EPA:DHA ratio; these pills are large, though (in the same size family as Augmentin XR), so not ideal for a younger child or one who doesn't like pills. I suppose the caplets could be pricked or sliced open and the oil administered in some other way, but I'm not sure how you would camoflage the taste.

Will your child swallow large pills? We use the Norwegian Gold Super Critical Omega fish oil which is entirely Omega 3 and 9 (no 6, which is supposedly pro-inflammatory), and has the 7:1 EPA:DHA ratio, which had been noted previously here on the forum as being the "ideal" anti-inflammatory proportion. This particular supplement is guaranteed "no fish burps" and features a dark blue, thick coating. We've been taking it for several months and have no burps to report, fish or otherwise. We tried flax seed oil, but had a ramp-up of behaviors while doing so; don't know if there was a correlation, but returned to the fish oil and things seemed to improve. Have read, also, that preliminary research suggests that omegas from plant sources are thought not to be as readily absorbed as those from animal sources, so flax seed may be less ideal in that respect, as well as because it includes some Omega 6. Our DS13 did not test low for Vitamin D, though we live in the Midwest and he's not an especially "outdoorsy" kid, so we felt sure his D3 needed supplementation. We give him an extra 2,000 mg. daily as it is supposed to be anti-inflammatory, as well.

Joan -- All the best coming your way! What an undertaking, but it's so wonderful to hear about the gains! It's downright inspirational! Big hug!

There are quite a few in and outpatient ERP programs. Another great one is in FL - we considered traveling there at the worst. If you go to the OCD Foundations website, they have a section on intensive therapy programs. One of the best is in Oconomowoc, Wisconsin, run by Rogers Memorial Hospital. They get folks from all over the country there.

The clavulanic acid "activates" the amoxicillin, i.e., augments its capabilities (hence, the term for the blended med name, "Augmentin.") How or why it seems to be more effective for many PANDAS kids over regular amoxicillin is up for debate. There are studies underway now regarding the potential antidepressant characteristics of clavulanic acid. Are you seeing a positive response on the amoxicillin? If so, it is potentially effective for this run-in with PANDAS. You may find, however, that it is neither effective continually, or that should there be a future exacerbation (let's hope not!), the amoxicillin will not remain impactful. Then I would definitely reach for the Augmentin!

Wornoutmom -- So sorry to hear about this latest downward "blip." I heard an echo of a lot of what my family has been going through for the last couple of weeks. We got back from our family vacation the third week of July (also air travel, though nothing as exotic as Hawaii!), and though our DS had mustered very well while actually ON the vacation, the slide backwards behavior-wise once we got back was startling. It was as though he had expended all his good humor, OCD management skills and spontanteity during the vacation and now had nothing left for regular, everyday life! We began to wonder if he was re-exposed, either in all the public gatherings out of town, or on the airplane heading out or back. Like yours, my DS remains on full-strength ABX and he was taking 100 mg. of Luvox, also, until very recently. We, too, have a filled prescription of Prednisone in the closet which we've yet to use, though it did cross my mind more than once in the last couple of weeks. We took our DS back to his ERP therapist and said "help us," and we went back to the psych, too, to re-evaluate the Luvox. He'd been on a dose as high as 200 mg. just a few months ago, and DH and I had decided to decrease the dose on our own because 1) we weren't convinced it was helping him at all, and 2) via the Murphy/Storch paper and the experiences of so many parents here, we thought it might be activating him. A reduction to 150 mg. improved his behavior, and another reduction to 100 mg. improved him yet again. So, at this point, after the vacation, we were wondering if we should try going down to 50 mg., or maybe switch and try another SSRI at a low dose level. I'm sorry, I don't remember much about your DS. Does he, by any chance, have any comorbid behaviors in his PANDAS in addition to the OCD? ADHD? Processing differences that might mirror something on the high-functioning end of the autism spectrum? My DS has some of those comorbid characteristics, particularly when the PANDAS is raging, so I attended a session on OCD and Comorbid Conditions (Tics, ADHD, Autism-Spectrum) at the IOCDF conference last month; Eric Storch of Murphy/Storch was on the panel. Anyway, they cited two studies . . . one that's completed and published and one that is currently underway . . . addressing this particular piece of the puzzle. As it turned out, low doses of Zoloft was discovered to be the SSRI of choice for these comorbid kids. So, long story short, we were back at the psych last week and began the switch from Luvox to Zoloft. I am knocking on wood hard enough to make a dent in it as I'm writing this, but my DS has begun to come back around already. He's moving past the obsessive thoughts more readily, calling up friends again, getting through tasks more quickly, has a happier attitude . . . a reversal of all the things we saw going south just a couple of weeks ago. And since he was already on a high dose of abx (Augmentin XR), the Zoloft was the only intervention change we undertook. So, was he re-exposed and it just took a week or two for the Augmentin to level him back out? Or was Luvox always the wrong drug for him, at any dose? Or is the Zoloft really addressing things somehow in a way none of the other interventions could? Don't know, but we're grateful. And I thought I'd share that in case it's something you might investigate. Another thing, too. During DS's toughest part of the exacerbation, our psych had him on risperadol and sometimes zyprexa, as well. Neither of these seemed to be especially effective for him, and I didn't care for the way they "dulled him down." You might consider, in addition to Ibuprofen, trying some valerian root? In terms of calming our DS's anxiety, frankly, we've found it to be every bit as effective as risperadol ever was, without all the side effects. Since it's easy to acquire and inexpensive, it might be worth a try. Most of all . . . . hang in there!!! It can turn around again!

Thanks, PMom! Really looking forward to those news clips . . . don't be shy! Let us know when they're scheduled to hit (assuming Pepsi tells you!)! Vickie, I can relate immediately with #4 also. I've been wondering all along if that might not be the case, so I guess this news from Cunningham is somewhat validating, though a little sad, too. While I'm committed to taking all the steps required for helping my DS manage the stubborn remains of the OCD, I had hoped that maybe, just maybe, despite having dealt with this stuff for probably close to 10 years in ignorance of the infectious end of things, we might be able to get him back to no-OCD one day. I guess I'll continue to hope that this could still occur eventually, but I will be ecstatic at "sub-clinical"!

Yeast overgrowth seems to vary from kid to kid; maybe there's a genetic predisposition for it, as there are so many things? At any rate, most of us here, I think, are big believers in probiotics to help replace and encourage continued growth of the gut flora. Our DS, for instance, takes about 150 billion units of various probitiocs daily: sach b, bifo, lactobillus, etc. For the most part, they're all supplements available at places like the Vitamin Shoppe or Whole Foods, or you can order them from a place like Kirkman Labs on-line. There're also brands like Culturelle that you can find at your local grocery or drug store. The key issue would be to make sure and incorporate flora beyond one of the most common type, acidolpholus, which is found in yogurt and kefir but is readily killed off by most antibiotics. Common advice is to try and space probiotics a couple hours on either side of dosing antibiotics so as to give them the best chance of repopulating the gut without interference. Sach b. is an exception, as it isn't susceptible to being killed by abx, and it's a "good yeast" that helps crowd out the bad yeast (candida, in particular) so that it can't flourish unabated. It's only my opinion, but yes, PANDAS concerns outweight the concern of long-term abx. And, according to our pediatrician, who is not even on board with the PANDAS but continues to prescribe our DS's abx under her "do no harm" oath, does not feel that abx resistance is of any real concern so long as we're not continually switching and/or reaching for broader and broader spectrum abx choices. My DS has been taking Augmentin XR for about 9 months now, and the doctors we see do not perceive any particular risk in this regard. Unfortunately, I don't think there's a pat answer to this. Some kids respond best to azith, some kids respond best to augmentin. Some kids respond to one or the other for a while, then they seem to stop responding well, and the docs switch to the other med, and improvement continues. Some docs even pair up the two and see even better responses. Augmentin is amoxicillin plus clavulanic acid, so, yes, it is different from regular amoxicillin. Though research is still underway, at least one of the PANDAS specialists feels that it is the clavulanic acid itself that makes augmentin as effective as it appears to be against PANDAS. There are also studies underway about the possible antidepressant characteristics of clavulanic acid (you can Google it). The XR form of Augmentin is the one that many families (including mine) have found to have particular efficacy, and it is theorized that the time release nature of the XR is what plays a role there; similarly, azith has one of the longest half-lives of available abx (something like 73 hours, I think), so that same duration of activity in the bloodstream might be a key to why these two drugs seem to work for so many of our kids. If you poke around here on the forum some more, you'll see a lot more discussion and investigation into the nature of these abx and why they seem to work. Truth it, nobody's entirely sure at this point, and because azith and augmentin are entirely different classes of abx, too (azith is a macrolide while augmentin is a b-lactam), and each of these is thought to have some different characteristics that can come to the aid of PANDAS. For instance, macrolides are thought to be anti-inflammatory and possibly immune modulatory, while b-lactams are thought to be glutamate modulatory and glutamate is increasingly thought to be at the heart of OCD behaviors. So, in the end, it might ultimately be found that your choice of abx for PANDAS might be guided, at least in part, by what set of PANDAS behaviors are most prevalent in your child. Yes, you could try a higher dose for a period of time, achieve behavioral results that you perceive to be acceptable or even potentially "back to baseline," and then drop back down to a prophylactic dose. In most cases, it's been suggested that you decrease the dosage slowly and see what behavioral results appear, if any. Frankly, we haven't moved down from the high dose at this point, so someone else would probably be better experienced in responding to that particular piece of the puzzle. Vickie's given you Dr. Cunningham's contact information for the CamKII testing and yes, you order it directly from her lab. You then take it to a local lab (like Quest) to have the blood drawn, and the test kit gets mailed back to Cunningham. Search for the Cunningham/CamKII threads here, as there are some good tips here about making sure in advance that your local lab will do the draw for an outside test, whether or not you'll need to ask your doctor for a lab order to accompany the Cunningham kit, etc. Cunningham will interpret the results and send you a full write-up and explanation. As for what CamKII itself indicates with regard to PANDAS . . . that's a LONG answer, and better put forth by someone more scientifically minded than me. But again, if you search the threads here, there is a LOT of information available specifically on this topic. Lyme testing (Igenex) I imagine is a similar process, though we've not done it. I imagine either a thread here, Igenex's web site or one of your doctors can help you with that. Other blood draws relative to immune function, strep, myco p, etc. would be ordered by either your doctors or one of the PANDAS specialists; these are more common and chances are that your insurance will cover at least a portion of the cost. It would be my understanding, meanwhile, that insurance does not cover Cunningham ($400), and I don't know about Igenex. Myco p is just another common bacterium that has been found to play a role in PITANDS. The PANDAS gurus differ in terms of treatment options. Dr. K. you can email initially (short and sweet) and he'll give you some feedback; he will also consult with your local doctor if you have one that's willing. And he'll do phone consultation directly with you as well. Dr. T. will do the same. It's my understanding that insurance will not cover phone consultations, however. You can, of course, fly out to meet with any of them, or find one closest to you and see if flying or driving makes the most sense. You would have to check with your insurance company to see if they would cover the visit fee and to what extent. One of the doctors, Dr. K., was actually in our PPO so our consultation with him was covered to the same level as any other doctor visit. As for treatment, however, that is another issue. IVIG is particularly unpredictable in terms of insurance coverage and will depend largely upon what immune issues may be discovered to be at play for your child. When there is an established immune deficiency, some of these PANDAS docs have been successful in helping advocate for coverage of the procedure. For most insurance companies, though, a PANDAS diagnosis is not sufficient for reimbursement. No question is stupid; I certainly remember first landing here at the forum and feeling overwhelmed! But when a particular subject (like CamKII) is something you need to know more about, drop it into the search box and read for a while from the related threads. This place is a veritable encyclopedia of all things PANDAS, and there's no way any one of us, however battle-hardened and experienced, could respond fully to all your questions with ALL the information and insights available!

I'll be interested in responses, too. We tried taurine several months ago for a short period. We initially felt we might've hit on something; his short-term memory and focus improved dramatically, Day One. But then he became sort of "activated," edgy. And since that was the only change we'd made in his regimen in recent weeks, we immediately associated it with the taurine, especially once we came to realize it's one of the key components of a lot of "energy drinks" (Red Bull, etc.). So we discontinued using it. But that may have been coincidental, and it was such a boon to his memory and focus, which he seems to be struggling with a bit now again, that I'm tempted to try it again. Anyone?

In my opinion, no, not at all. In fact, you seem WAY ahead of the game, compared to many. You've been proactive and found professionals to assist you. The treatment protocols are still under development, without full agreement by any of the specialists in the field, even, and even if the protocol was fully understood and set, it seems likely each kid would/could still respond in an individual way. Not necessarily; didn't you indicate that he would improve on those dosages? And that when you took him off and he decompensated, you'd get him back on again? Then, at least on some level, you were meeting the needs he had at the time. What my family is discovering is that there's something different that kicks in around puberty, and it seems possible that the treatment needs shift some at that point. With a new, current round of testing for strep, lyme, myco p., etc., you might be better able to identify more specifically what infectious agent you're dealing with, and then find the dosage/med that's best suited. If you've lurked here for a while, you'll see that our kids tend to respond differently to different meds, but when it's strep related, the two most prominent and helpful seem to be azith and augmentin, particularly the XR (time-release) variety. I think every parent asks him/herself that at one point in time or another. When my DS13's last exacerbation hit last spring, I thought he had it REALLY bad; then I read "Saving Sammy," and I thought, well, maybe he's not SO bad compared to some. Now, at times, I find myself a bit envious of others who've come to better places than we have in terms of behavior, remission, etc. It changes almost daily . . . such is the resilience of the human desire to be happy! That's the $100 million dollar question! My DS is 13-1/2, and we've been "riding it out," with the help of antibiotics, therapy, supplements and low-dose SSRI's for about a year now. It has it's good days and it's worse ones, but we celebrate every gain, however small. The thing is, it's a balancing act and a personal choice about what "riding it out" costs the kid and the family, eh? Because our DS is generally in good spirits, can have fun, can think, can laugh and joke, despite some tough-to-eradicate OCD behaviors, we tend to think that, yes, we can ride this out . . . so long as he doesn't start to slip away again. But if we should arrive at the point again where he can't attend school, feels as though his life is not worth living, shrinks inside himself, feels like an utter failure academically, etc., then riding it out any further won't be an option. We'll have to get more aggressive with this PANDAS animal! Not necessarily, especially if they're receptive to your contributing research, ideas, etc. But you may want to start bringing one of the more seasoned PANDAS specialists into the mix. It does seem as though your medical team has done a good job assisting you up to this point, without being dismissive or negative. But it probably wouldn't hurt to see one of the docs for whom this is their primary focus (listed here on one of the pinned threads at the top of the forum. Lyme testing, definitely! It seems more and more folks are discovering lyme lurking in the background of their conditions these days, so ruling it out seems well worth the effort. IVIG? That's another personal decision largely predicated, I think, on how your child is impacted by the condition and how well he responds to the other available treatments, like antibiotics. My DS13 has an IEP at school that affords him accommodations and support, both inside school and outside (when it comes to homework, absences, etc.) From our experience and reading here over the last year or so, I would say that prophylactic meds for school-age kids is almost required; schools are petri dishes! Again, med choices and dosages vary, but once you're clear on what infection you're dealing with and what abx your child best responds to, the prophylactic med should make itself more clear, I would think. Grab on tight for quite a ride! In all seriousness, it sounds as though you've already got a familiarity with the situation, and its now a matter of adapting to your son's level developmentally, age-wise, cycle of exacerbation, etc. At least now you know where you can come for lots of empathetic company! Welcome to the forum, and hang in there!

Much of what you describe appears to be very indicative of PANDAS. I would seek a strep test and a professional opinion by a PANDAS-knowledgable doctor ASAP. Some PANDAS kids do exhibit some autism-spectrum type behaviors, like Aspbergers; my DS definitely does. And the extent to which these behaviors are tied to actual Aspbergers, and how much they are just a symptomatic behavior of the PANDAS is up for discussion. But I do know from experience that treatment for PANDAS has improved my son's Aspberger-type behaviors, so there's definitely some connection. Good luck to you, and keep seeking answers.

Man, that is some paper! I love how it brings pretty much every area of OCD study and treatment into at least some of the discussion, and it's obviously very recent. Thanks for posting!

Yes, our DS's OCD behaviors . . . both obsessions and compulsions . . . would "shape-shift" frequently, especially when he was younger. It seems to us, as he's gotten older, they tend to "stick" more firmly and, pretty much like everything else with PANDAS, are more difficult to eradicate as he gets older.

Hey Emerson -- Not suggesting oatmeal. You had mentioned in your post that you'd purchased gluten free cereal but were having issues with a fear of swallowing. I was just suggesting that maybe, instead of putting milk on your cereal, you boil up some water, pour it on the cereal and let it help break it down and make it mushy, more or less like the consistency of oatmeal or the mashed potatoes you've been able to eat thus far. It's just another way of consuming the cereal, hopefully in a way that's easier for you. Good going getting your stepdad involved! Please keep us posted on your appointment(s)!

Unfortunately, we see a lot of "shape-shifting" of behaviors, and, in our experience, ceasing one and focusing on another doesn't always indicate improvement. It can all come down to the kid's ability to "generalize," accepting that if this issue isn't of concern anymore, then a related one isn't of concern anymore, either. Some kids though, like our DS, aren't inherently wired to generalize; so, were he to have your son's issue, he might articulate, for instance, "Well, I don't have to wash as much because I'm using both sides of my napkin better and my hands are feeling okay when I leave the table, but I can't touch that food because it is sticky/greasy/smelly/icky, and if I did touch the food, then I would definitely have to wash my hands afterward." Also, just one thing to maybe keep an eye out for: hand-washing isn't always a sign of "contamination OCD." It can also be "just right OCD," which is what our DS primarily presents with. He's not afraid of germs, or consequences because he's touched something that might be dirty or germy. Rather, he doesn't like the texture, the stickiness, the greasiness, etc. of various things and just flat out considers them "gross." He washes because he wants his skin to feel "just right" and dislikes the "extra frictiony feel" they get after handling certain things. Also, I'm not sure I agree with this, but we've had more than one therapist/psychologist tell us that "contamination OCD" is frequently sort of OCD's "last hurrah" before receding into the dark recesses, i.e., taking a holiday and leaving the kid alone. I'd be interested if anyone else can speak to this from experience. All that said, if your DS is washing less, I'd definitely comment on it and praise him and encourage him. Not only should the praise buoy his spirits, but then he'll know you've noticed and you're watching, and it might help him stick with dropping that particular behavior for good.

To echo LLM, you need to impress your mom with the seriousness of this situation. When it impacts your ability to nourish your body, PANDAS isn't something you can "just deal with" on your own anymore! You need help, and you deserve to have it! Also, as you seem to be such a strong, brave, articulate, determined young lady, while you work on summoning your resources in terms of medical help and parental help, you might also try . . . slowly and carefully . . . some basic ERP (exposure response prevention) therapy to help yourself accept new food beyond the mashed potatoes. What if you took some of that gluten free cereal you bought, boiled some water, and made hot cereal out of it? Almost oatmeal like? That would have a similar consistency to the mashed potatoes, and you could try a bite at a time . . . see if your anxiety will lessen after one bite or maybe two . . . about choking. There are books in your library, I'm sure, like "The OCD Handbook" and "What To Do When Your Brain Gets Stuck" that can help you with some ERP exercises that will help you take some control of some of these behaviors while you seek the PANDAS medical help you also need. And I also echo WorriedDad's suggestion that you try to find a doctor who'll help you with an antibiotic prescription. Of all the potential PANDAs treatments, this should be one of the most accessible, most affordable options, and we know it's helped many youths and adolescents, like WorriedDad's son and mine.

Bronxmom -- I take it from your name you actually live in the Bronx? That may make it tough to get raw milk on a regular basis, though you'd think that if you could get a "specialty food" anywhere, New York would be one of the best places to try! You might try calling around to some of the family-run dairy farms in upstate New York or New Jersey . . . the smaller ones without corporate owners. Haven't done it in a while myself, but we had some success with some small farms in rural Indiana (we're in the Chicago area) that would literally let us come with our mason jars and fill 'em up, right then and there, with one of their cows for about twice the price of store-bought milk.

Breastfed

Yes, seams or tags may be the issue; we've seen this in the past with our DS and were very glad when Hanes and a couple of other brands finally took to making t-shirts and even underwear with stamped-in tags, rather than sewn in fabric ones. I think Hanes, Jockey and Victoria's Secret make seamless female panties, too, so maybe you could try those?