MomWithOCDSon

Unfortunately, we're all just sort of "winging" it as best we can! Every doctor and/or medical center seems to have its own protocols, and all you can do is do your best to work within them and/or get around them when there's an opportunity to do so. Honestly, I would suggest that you go down whatever paths available to you, even if they're parallel. Especially if money isn't an issue. I would call the scheduling office for the doctor at CHOP and get in line; you might also ask to be put on a list for cancellations, if you have the kind of flexibility that will allow you to fill in an available spot at the last minute. I'd also call Dr. T. and get on his appointment calendar; then you'll know who has the first availability. Even if CHOP can take you first, if you can afford to, you might still want to keep the Dr. T. appointment for the benefit of the additional information and support his experience can provide. But if Dr. T.'s schedule allows him to be your first appointment, then you can gauge whether or not to keep the CHOP appointment, though it would still be beneficial to have someone in your corner locally. If both schedules are exceedingly far out, can you appeal to your existing pediatrician for some interim help? And, whichever way you wind up going first, if you decide not to keep the later appointment, make sure to cancel with as much advance notice as possible! There may be another PANDAS family eagerly awaiting the opportunity to fill your unneeded spot!

The first link doesn't work for me. I upped DS's Vitamin D supplementation level a couple of weeks ago, not so much out of conscious choice but because the higher I.U. supplement was on special where we normally purchase. I have noticed that his eczema has taken a holiday of late, but I had initially associated that with our stepping down off the B-12 a bit (histamine production). Maybe the increased D3 is at play, too?!

Christiansmom -- I'm sure Dr. T. is correct and a higher dose of XR would be "safe" for your child. I would think the only major cross to bear might be the gastro-intestinal distress experienced with many strong antibiotics. I know I've seen references to that in adults taking the adult-sized dose of XR. I'm curious . . . will Dr. T. prescribe this for you? Or will you work with a local doctor/pediatrician for the prescription? Please do keep us informed on this! Thanks!

worried dad -- please do post about how that goes. i am interested in ramping down stories. thanks. Yes, please WD, keep us posted. About 3 weeks ago now, with our DS doing well and holding steady, we decided to once again try stepping it down. We started out just switching out one 1,000 mg. XR for a 500 mg. regular Augmentin every other night. Now, after about 3 weeks of doing that and seeing no negative impacts, we're about to go for a 500 mg. nightly, in place of the XR. This'll be about our 5th trial of decreasing the XR in more than 2 years, and we're holding our breath that, this time, it'll work! So far, so good, and that's better than he's done in previous trials. But we're on pins and needles nevertheless! Feel like it's time, though. Good luck to you!

1,000 mg. XR, originally twice daily for a total of 2,000 mg. We've recently began to cut back, down to 1,000 mg. XR in the morning and 500 mg. regular Augmentin in the evening. Knock on wood, but this time, so far, so good.

We haven't used the shots, but for a while we were using some potent B12 sublingual lozenges; the original goal was to lessen DS's anxiety because the B12 is supposed to absorb excess brain glutamate. I do think that, in his case, it actually lowered his anxiety level for a short period, but that could've been psychosymatic, both on his part and mine. What we found, though, was that it increased his histamine levels, so it made his eczema especially considerably worse! I know that Dr. T.'s work indicates that some PANDAS kids tend to have atypically high histamine levels, so perhaps that's the reaction you're seeing? There are a couple of other threads here on the forum that a search for "histamine" should reveal, and there were some papers and links attached about the link between histamine and various behavioral impacts and disorders.

There've been other reports here of folks who's kids reacted badly to fish oil, in which case I think they've moved to flaxseed oil and other omega options. Our DS has been taking the Norwegian Gold Super Critical Omega brand because it has the EPA:DHA ratio of 7:1 that had been recommended. This formula contains 780 mg. of EPA per capsule, and he takes two per day, so he's getting more than 1,500 mg. of EPA on a daily basis, to no ill effects. It must depend on the kid?

Quick answer to your question in our case is "no." I read up on XR, also, and saw those references to a full-sized, adult treatment dose for sinus infections and the like being 4,000 mg. per day. And our DS, 12 yo and 125 pounds when all this started, was certainly large enough to take the adult dosage. But our pediatrician was already pretty far out of her comfort zone on the whole PANDAS thing and the 2,000 mg. of XR daily, as it was; I'd convinced her to give it a try based on the "Saving Sammy" dosage, and there was no way, without a visibly "active infection" (which my DS has never had . . . he's entirely asymptomatic except for the behaviors and high titers), she was going to double the dosage. So far as I know, I don't think anyone else here has gone to that dosage, either, though some of us have kicked around the "what if's." Would it have made a bigger difference, faster? It's really hard to know. I'll be interested to hear if anyone else has gone that extra step. In many ways, the XR has been magical for us, so it seems possible that, at that dosage, the results might be just short of miraculous.

Augmentin XR, here.

Sorry to hear your daughter seems to be experiencing some increased anxiety. Can you get her back on some abx or some other medical intervention. You known, I know what you mean about this year's teacher . . . that she seems strict and not encouraging, "coach-like," etc. Does your DD feel the same way? I'm only asking because I know in the past that I've taken an exception to some of DS's teachers, only to find that he, whether out of necessity or pure choice, seemed to find something to like about them! So, only to say that it is still early in the school year and perhaps the structure provided by this strict teacher will, in the end, help your DD out and feel secure in the school environment. Another thing I know because both my sister and my mom are elementary school teachers: the rule of thumb is you start out the school year in a "no-nonsense" and "all business" tone, and THEN you can lighten up as you get to know your students and they get to know you. The problem is that if you start out in reverse . . . easy-going and humorous and "open," some students will take advantage, and you can't go from "soft" to "hard." It's much easier to go from "hard" to "soft." Just a thought. I think you're on the right track to get a doctor's letter to begin the 504 process, especially if your district is at all sticky about it, or if your DD can appear to be self-sufficient and capable during the school day, without a lot of obvious need for interventions. My DS was so overcome with anxiety at points that the school approached us about the 504. But let's be honest; they wanted him to have it so that he could have extended time on standardized testing so that he could help them keep their Every Child Left Behind testing scores higher rather than lower! Still, I do know some people have to fight for the 504 Plan rights, so best to have that doctor's note on your side! In general, 504's are less formal and entail less paperwork and requirements than do Individual Education Plans (IEP's). You don't necessarily need to have any neuropsych testing, etc., but if you DO have any of that in hand, definitely include it in a submission request. I don't think you need the doctor to list the accommodations your DD will need; just have him/her state what the condition is, what the general manifestations may be, and that he/she sees a need for some additional assistance in the school environment. Since some of the others here have doctor's letters to offer, that should be a good start. As for accommodations, they should be specific to your DD's needs and, to the extent possible, lead to as little inconvenience to the teacher and the other students as possible; that way, the school can't complain about how what you're asking for your DD is imposing on the rest of the students. Some of the 504 accommodations we had included: extra time to get from one class to another without being marked tardy; opportunity to keyboard written assignments instead of handwriting them; extra time on homework assignments and quizzes/tests; more frequent bathroom breaks; assigned seat in the cafeteria (where our DS knew the staff would be sure it was clean and "ick-free" when his lunch period was after another class'). In the end, if your DD qualifies for the 504 in your district without any real pushback from the school, and the teacher, in the end, matches up to your take on her as strict and not especially nuturing, if your DD continues to struggle with school, you might consider an IEP. An IEP is more formal and has a higher bar for entry, plus it technically designates your child as "special ed." But it can be very beneficial in that it also requires the district to give your DD an in-house case worker who is there to be her advocate, her sounding board, her coach, etc. And it permits for a broader and deeper array of accommodations, should your DD need them at times (like during exacerbations). Plus, despite the "special education" classification, assuming your DD is capable, she will remain in general education classes with her peers, just like always, so it doesn't cause any stigma to her in that regard. Just another thing to consider. Good luck! Feel free to PM if I can offer anything further!

Has anyone had any experience with Acceptance and Commitment Therapy (ACT) for addressing OCD? Our DS14 is doing quite well with respect to managing his OCD, but the scrupulosity has been very hard to get at in conventional methods, despite some pretty intensive ERP therapy over the last 18 months. So we've had a therapist suggest that he try ACT therapy. Wondering if anyone here has tried it, or had any exposure to it? At this point, we sort of figure we've got little to lose (a few $$, but we've been paying that for ERP therapy that's not really managing to get at these scrupulosity thoughts for a while now), so it's worth a try. Would love to get some feedback, though. Thanks!

Hi PhilaMom! I've not responded up until now 'cause I was hoping someone else would actually have what you're looking for. Meanwhile, I don't think that I do, but maybe I could help out somehow. Are you looking for a letter as a parent directed to the school requesting a 504? Or are you looking for a sample letter to be signed by a caregiver (pediatrician, psychologist, whatever) that you could prepare for their signature supporting your request for a 504? Or are you looking for ideas for the content of a 504? My DS was granted a 504 in 3rd grade and, unlike what I see with many kids in other parts of the country, it was actually the school that approached us and suggested we try a 504, rather than the other way around. So we didn't have to supply a whole lot of back-up or gear up to do battle to get the accommodations or anything. I'm coming to understand that's somewhat unusual, and we were very fortunate. That being said, we had a 504 Plan for 3 years and then transitioned to an IEP, so I feel as though we have a good bit of experience in terms of coverage, inclusions, etc., so if I can be of any help in that regard, let me know!

Terrific news! Loud applause ! ! ! ! !

Hi there! Well, I don't have a medical background, but this is what I understand from my own research and experience. Typically prophylactic antibiotics are the same abx used for treatment, just at lower and/or more irregular doses. Those with longer half-lives, such as azith, some people only need to take once every three or four days in order to remain protected from strep or other microbes to which they are susceptible. Others, like Augmentin with shorter half-lives, though, even prophylactically, need to happen daily, though sometimes lower doses than treatment doses are effective. I don't know if there are, per se, "stronger" and "weaker" classes of antibiotics, but there are definitely "narrow spectrum" and "wider spectrum" abx. Dox typically want to stick with the narrowest spectrum abx they can for treating a given infection for fear that the patient will develop resistance and then it will be difficult to find another drug to which the patient will respond. As far as which ones might be harder on a system, that probably varies from person to person and what their innate natural gut flora is like as a general rule, even before the abx regimen is begun. For instance, we found regular Augmentin -- possibly because of its high clavulanic acid component -- to be relatively hard on our DS's gut (diarrhea, cramps) -- and regular, healthy doses of probiotics helped but didn't completely alleviate that response. On the time-released version of that medication, however (Augmentin XR), we find his gut issues are virtually non-existent, so the lower clav acid component and/or the slower, more gradual release of the medication seems to help. Does that help at all?

Julie -- I PMed you. Welcome to the forum!

I'll be thinking of you! Glad you'll have someone there with you; that will, I'm sure, help you tremendously. Keep us posted!

Way to go! Glad things are looking up! Your physician will soon learn, if she hasn't already, that it's not just the PANDAS kids who wind up riding a roller coaster with this condition . . . it's their families, too! Crying in the morning, celebrating by afternoon! What a ride!

Yes, thanks! And sorry I called you Airial! I haven't had enough coffee yet this morning!

Satara -- Because the laws are certainly different, but probably similar, between the U.S. and Canada, I can tell you about our state-side experience, but you'll probably have to reach out and/or do some research so that you know what your DS's full legal entitlements are. First, I would assume that this is an "informal" meeting at this point, since statuatory Plan meetings (called 504's and IEP's here) require a written notification to all involved and give a full roster of those scheduled to attend and what their titles/roles are. If, by chance, however, you walk into this meeting and it looks as though they are gearing up for some sort of formal, documented approach in terms of where to go with your son from here, I would think you'd be well within your rights to ask for an adjournment and rescheduling with a full disclosure by them as to what the formal meeting will entail, what is expected of you, what their obligations are, etc. Here in the States, there are web sites devoted to informing parents about their kids' rights in the education system, with the formal intervention plans available, etc. And the school personnel is also required to give you certain documentation along those lines, as well, so that you can read it and be fully informed. So don't feel as though you have to continue with a meeting for which you're not fully prepared, or be "bull-dozed" into agreeing to anything -- interventions, etc. -- on the spot. Second, if your DH isn't available but you have a trusted friend or family member who can come along for moral support, bring them. You're entitled. They don't have to say anything or prepare anything, but they can be by your side to squeeze your hand or hand you a tissue if you find yourself feeling emotional for any reason. Plus, they may think of things that could be said or added to the discussion that you're just not mindful of in that moment because of the anxiety such a meeting is bound to cause. They can whisper those things to you, or jot them down on a notepad to bring them to your attention. Third, prepare for battle but hope for and expect compassion, kindness and understanding. Frankly, after the horror stories I'd heard from some others in similar situations, I was "loaded for bear," as my DH says. But, in the end, it turned out to be a great experience. I found that most people in the room (all but one, as a matter of fact) had my DS's best interest in mind and really, truly wanted to help, rather than find reasons to say they couldn't or wouldn't help. All you really need is that ONE kind, understanding soul on the other side of the table; speak to him/her, solicit their assistance and advocacy with the others. And finally, just know that if anything along the lines of "you should keep your son at home" crosses any lips, you're entitled to a lot more and a lot better than that, and if they won't provide it willingly, then you can adjourn the meeting for the time being, go home and "bone up," and come back ready to take control of the next meeting. Here, our children are all entitled to the highest level of education possible, which means that even a "special education" kid who has advanced academic skills cannot be retained in a special ed setting all day that fails to meet his academic skills; he has to be mainstreamed and challenged. And if a school cannot meet a special needs kids' needs, then the school district is compelled to both 1) help find a school that CAN meet those needs and 2) fund that alternative education. There's no "keep your kid at home" allowed! Hang in there and good luck! Let us know how it turns out!

Airial -- The link doesn't work for me; it seems to be personalized as it offers to allow me to set up my own GoogleDocs page. Any chance you can paste the information in here for viewing? Thanks!

Airial -- While we haven't dealt with those specific issues in the past, the first thing that comes to my mind is that your DS is, for some reason, avoiding the actual, physical potty. Maybe you can talk with him a bit to see if, due to this exacerbation, he's developed a new fear about the potty in particular or the bathroom in general? I know that, during peak exacerbations, particularly at younger ages, my DS literally feared the bathroom because of all the rituals he felt compelled to undertake when in there. So he would avoid it like the devil, as long as he could. He was older, though, and had contamination OCD along with everything else, so he wouldn't just pick some less-anxiety-producing, random place to go. But maybe that's what's up with your DS? I can understand not wanting to go back to Pull-ups (sort of validating the behavioral piece of the regressive behavior at that point, eh?), but maybe you can use some of the other techniques we use during initial potty training, like insisting on potty breaks at reasonable intervals. This might also clarify whether or not it is, in fact, using the potty that he's trying to avoid.

Another new find, thanks to a Google alert. Looks very interesting in terms of perspective and purpose, though I have yet to poke around the whole site. Physorg - ENCP Congress

Okay. So was the main point behind the psych evaluation getting him a 504 Plan or an IEP within the school district? And even though the psych didn't do a good job (I would call him out on that, by the way -- I'm sure the testing wasn't inexpensive), did the report qualify your son for services in the education district? Sorry, as I'm not sure where you're residing (the internet is tricky like that), but assuming you're in the U.S., a 504 Plan will give your son accommodations in the classroom to try and make the school day easier for him, but it doesn't grant him any additional psychological or sociological services at the school's expense, as I understand it. Only an IEP (Individualized Education Plan) can do that. So it would seem to me that's what your principal is aiming for. Even then, I think what's alloted via an IEP is something fairly nominal in terms of time, like two 40-minute sessions per week? And even then, if the district personnel isn't fairly well versed in the issues, the benefit of that counseling is questionable. Unless, of course, because of the size of the school/district, the personnel isn't available in-house and then the district would be compelled to cover your costs of acquiring counseling outside the school itself. We have always secured the services of a private therapist, in addition to what the school can provide; it just didn't seem possible that the school personnel had the skill set or tools to help DS adequately. At your son's age, mine started with a 504 Plan, which granted him certain accommodations, like potty breaks when he needed them, untimed testing, extended time for homework, etc. But he didn't get anything other than occasional visits with the school social worker or psychologist, and those were more for his "escaping classroom chaos" accommodation that actual counseling. When he got into junior high school, though, it became apparent to us that he needed more help than the 504 gave him, and we allowed it to be transitioned to an IEP. The IEP technically classifies him as a student in the Special Education program, but because he is academically capable of all mainstream coursework, he stays in the regular classrooms and takes classes just like all his friends. The difference is that, in addition to the accommodations like extended time for tests and homework, etc., he also has a case worker in the school who's job it is to advocate for DS with the other teachers and help coordinate and organize his academic day. Then DS also gets two social work sessions weekly: one individually, and one with a small group. In either the 504 or IEP, the accommodations are specific to the kid's needs and are for the purpose of "bringing the child even with his peers," not giving them any advantages over the classmates; that's something some schools can be touchy about. So, our DS has the following accommodations: extra time for tests and homework, additional excused absences for doctor's and therapist's appointments, some assessments taken verbally rather than requiring them to be hand-written, keyboarding assignments rather than hand-writing them (his handwriting suffers in exacerbation), no being marked tardy if he arrives to class a little late because he had to stop in the washroom, not required to share a locker, has a locker at the end of a row (somewhat isolated), allowed to arrive to school 10 minutes early and go to his locker before the throng arrives, etc. As for food triggers, I think that's entirely possible; if you run a Search here on the forum, I think you'll find a few threads on the topic in which parents have found their kids to be sensitive to various things, from gluten to dairy to MSG. I know you're thrown off by the sudden changes in your son and you want him "back," immediately if possible. Take a deep breath and try to see if you can tackle one or two issues at a time, though. You'll burn yourself out trying to address all these complex issues at once!

Is it that one that Smartyjones really likes, maybe? anxietybc.com, I think. AnxietyBC

Peggy -- Is it a site and/or materials directed toward kids? Or toward teachers? Or toward parents? Or all three? There's a few of them out there . . . .