MomWithOCDSon

Oh you and your muddy water! But you're right . . . another one of my entirely-personal-non-scientifically-based-whack-a-mole theories shot to heck by your DS's case! I guess that's just another reason why I won't be getting the Nobel for Science any time soon. Interesting, though, especially in light of the fact that Cunningham has noted some specific differences in terms of D1 and D2 receptor elevations between kids with different behavioral symptoms. But then, I guess inflammation could play into any and all of that, and the impact may even move around based not only upon genetics, but maybe developmental stage as well? Would make some sense in light of the fact that some PANDAS symptoms seem more transient, while other "stick." And even in the OCD world, my DS's compulsions and obsessions are constantly "shape-shifting" in terms of focus, though the severity seems to be tied to infection or re-exposure. You got that right . . . damned slippery!!! We'll be sure to let you know how it goes on the reduced XR; we just figured it was time, and I really am both curious and hoping that we've reached the point now where any impact would be nominal, if it manifests at all. Day 5 and counting . . . . .

I completely agree. In fact, it was Sammy who set me definitively on the PANDAS path, after having had my PANDAS inquiries repeatedly waved off in the early years of our DS's OCD diagnosis. The more I read families' stories here, as well as some of the research (most notably Cunningham's), the more convinced I become that OCD-predominant PANDAS and tics-predominant PANDAS may ultimately be found to have different ideal treatment protocols and recovery trajectories. If (and I suspect there is) a genetic component to each condition with infection serving as the "trigger," it seems entirely possible that getting at that trigger and abating the condition will require treatment "tweaked" to the basis of the condition itself, including the innate genetic component, doesn't it?

I think a lot about that question, as our daughter is still abs only. She had 4 exacerbations before treatment, we were unable to find treatment, so used ERP. She would remit 80%, baseline steadily increasing, each exacerbations lasting about 3-4 months. Very severe OCD. Azithromyacin was really miraculous for us. We continued ERP as well, but the azithromyacin was a turning point. While we would do ivig if needed, we are now a year out, and holding at 99% with very small blips. I second the idea that if caught early, abs may be enough. And for some kids, it seems to work as well, even later, like mine. I think a lot of those parents leave the forum, and only rarely post. But i am not terribly opinionated about this, we continue to be open to what life may bring, although I pray daily for normal to continue. She did improve to 95% in about a month or two, then with steady improvement over the next 6. I am happy to report that we, too, are having great success with abx alone. We, too, still have some blips and we are great believers in ERP as our DS's OCD was at an all-time high a year ago this time, before we found PANDAS and began abx. He'd had the condition at least 6 years before we tried abx, and probably longer. But we kept him on full-dose Augmentin XR for just under a year, and he continued to make strides, despite some saw-toothed setbacks now and again. Today, he's in school (8th grade), back in his gifted classes, knocking things out of the park academically, and laughing and having fun on a daily basis. The only real remnants of the condition we continue to see today is homework pace (like molasses running uphill in the dead of winter, frankly) and some scrupulosity (very concerned with "doing the right thing" and "saying the right thing"). But the contamination concerns and general anxiety that had crippled him have essentially evaporated (knock on wood). Today, we've halved the XR dose and we hold our breath to see how he fares as a result. From historical experience, it's a bit too early to tell (usually 8 to 10 days is the tipping point, and we're only 5 days out as of now), but we are hopeful that he's back in balance, finally. In the end, I continue to believe that time is an essential element in our kids' recovery.

1. BCBS stinks, IMHO. I have nothing good to say about the way in which they handle claims. We have them, too (in Illinois), and every year, I beg my small employer to change companies. 2. I would think the recent changes (i.e., Mental Health Parity Bill) would have nothing to do with this particular situation, as nothing in your claim would have anything to do with mental illness, on top of which, now what we can actually THANK that bill for is the fact that any therapy, psych visits, etc. our children attend is covered to the same extent and in the same way as their visits to the pediatrician, the allergist, the immunologist, etc.

Ditto. I did this a lot as a kid and teenager, also; in my case, it was my favorite way to read. My DS13 does this sometimes, as well, when reading a book. I think it is a sensory thing, as DS has a lot of sensory issues, and I think I did, too, as a kid (though I was just told to "get over it" and "act like a lady!" )

Yes, we use melatonin as a sleep aid for not just DS, but ourselves, as well. 3 mg. will have us all snoring within about a 1/2-hour, so I give it to DS as he settles in for a little bit of reading before lights out. Sach boulardis is one probiotic we have relied heavily upon because it is very good for preventing diarrhea while taking high-dose abx. Plus, it can be taken at the same time as abx, without having to worry about timing or staggering the dosage, because abx can't kill it. "Florastor" is a popular brand name that some doctors will recommend that's 100% sach b., but you can also get other brands (like Jarrow) at a better price at a place like The Vitamin Shoppe. I think the one PANDAS families are avoiding is a form of streptocauccas (?spelling?) that shows up in some probiotic blends, as well as in some cheeses and yogurts. The probiotic blends will tell you what cultures are contained within the capsule, though, so it is relatively easy to avoid in that form.

Mom -- I actually met a young man at the IOCDF conference in July who had this brain surgery a couple of years ago. I guess he had been through every other possible intervention (met his parents, too), including a stay at the Rogers Memorial inpatient program in Wisconsin, and he was still completely incapacitated by his OCD. I'm not certain of the numbers, but I think only something like 13 people thus far have actually had this surgery? The young man . . . 19 years old, as I recall . . . still has some OCD, but his parents say that the surgery was the only thing that made him functional again. Sounds pretty scary though, I will say. There was a session at the conference on this surgery; my DH attended but I couldn't bring myself to do it.

No, this is a standard dose, available in capsule form.

So sorry. Tears were welling as I read your post. I feel as thought we've been in that place a time or two ourselves,though it was briefly. I know you will hang in there, that's what moms do. And your son knows that, too. Something in his system needs more support, and you'll eventually sort out what that is. But in the meantime, just love him. That will help him . . . knowing you love him, no matter what. My thoughts and prayers go out to you, along with a big cyber hug.

In general, the advice for kids with PANDAS is, if you need to try an SSRI, start very low and very slow. Interestingly, this is fairly identical to the advice given to parents of "regular" OCD kids with comorbid conditions like TS/tics, ADHD, and autism-spectrum disorders. Higher doses can activate, but sometimes low doses do help alleviate some of the OCD. Our DS was on low-dose Lexapro for over 4 years with only good results . . . until the latest exacerbation, during which period it did absolutely nothing to help. We tried Prozac and Luvox; our psych does not like Paxil because of the withdrawal side effects, and he always has one eye on weaning the kid off the drug as he/she improves. The Prozac did nothing, and the Luvox seemed to help, though by the time we moved to it, we also had abx going and frankly attribute most of his improvement to the abx. After learning at the IOCDF conference in July that two pediatric studies at Brown University and Pitt found that Zoloft was especially effective (in combination with cognitive behavior therapy) for OCD, we asked our psych to try it for our DS13 (135 lbs.). We began at 50 mg. and had some good results; about 1 week ago, we increased to 75 mg. Thus far, we've had good results on that, as well. Every person is different, so finding the right abx, SSRI and even supplements, sometimes, I think requires a little trial and error. Good luck!

Oh Peg, I'm so sorry! Surely Dr. L. will validate the treatment! Why wouldn't she?! I have to admit, this has been a big fear of mine with our own ped. So I've been a little paranoid about leaving detailed messages with anyone else on the staff. I'm always afraid someone will question her decision to help us with abx long-term, and then she'll get skittish about prescribing them any more. I don't suppose reminding him (and his partners)of their Hippocratic Oath would help at all? ("I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.") Hopefully, Dr. L. will set all this to rest for him and you. Cyber hugs!

I would have to agree with the others. Our DS's PANDAS symptoms (predominantly OCD) faded dramatically over what I would consider his first major exacerbation, but it did not completely disappear. We were still left with sensory issues and "quirks," even though the clinical OCD went into hiding for a little over a year.

Mom Love -- We've pretty much only dealt with the exact opposite problem, so I don't have a lot of experience to share here. I will say, though, that Benefiber, mixed in juice, is virtually undetectable and may help some? We've also been known to sneak some castor oil on the bread, under the peanut butter, when DS has had these issues due to other concerns. A final consideration might be, are you certain the constipation is medical? That your DD is not "avoiding" or withholding "going" because of concerns she might have regarding it? I only ask because we've dealt with so much OCD in our house, and toileting can be one of the places that the compulsions and obsessions "nest." For a while, our DS would try to avoid having to go because he didn't like the way it made his body feel, or the necessary clean-up that accompanied the process, etc. If your DD is displaying other OCD behaviors, it might be something to watch for.

Justine -- I've been told that S. Boulardii is especially effective with regard to diarrhea, so maybe if you cut back on that, your child would have fewer issues regarding constipation?

So true! Our DS, too, always struggled with the danged times tables and the teachers' insistence that you be more or less "automatic" about them. They would have drills in class where she would hold up a big flashcard with a multiplication problem on them, and it was a race among the students to be the first to shout out the answer. DS repeatedly came home from 3rd and 4th grades talking about how "stupid" he was because he couldn't "do math fast." Fast forward to 8th grade and he's still one of the last kids to finish a quiz and can be painfully slow about math homework (those "explain your answer" and "show your work" problems are the bain of his existence because he, too, struggles with handwriting and math doesn't readily lend itself to working off a keyboard), but he remains in the gifted math program and can do things in his head I've NEVER been capable of! Smarty -- I've discovered my DS thinks "backwards" sometimes with regard to math, which sounds similar to your DS. In first grade, they used to make a big deal about the First 100 Days of School. And for math, they would build this bar graph (10 columns by 10 rows) to show where they were in terms of reaching 100 days. At the open house that year, the teachers asked what day of school it was (43), and then she had some of the students demonstrate how you might come to that answer. So one kid says 10 x 4 + 3, and another one says 10+10+10+10+3. After which, my DS volunteers: "100-(6x10)+3." For the entirety of first grade, that's what he would do: take his math out to a big number, and then subtract instead of add or multiply. I couldn't figure out why. And, to this day, he still seems to do his math differently, but he almost always gets to the right answer. "Slow and steady wins the race."

Hi! Well, while I have to admit to knowing little about tics or TS, in particular, my DS and I have been through the wringer with OCD. And your first sentence really caught my attention: "antibiotics seem irrelevant when there is no active illness." I guess it all depends upon how you define "active illness." In PANDAS, tics and OCD behaviors ARE signs of active illness! And, in many (not all, of course) cases, antibiotics CAN have a dramatic impact, even without the classic medical illness symptoms like fever, sore throat, congestion, tummy pains, etc. My DS13 has had OCD since 6 and never had any classic symptoms of strep, EVER. So we never treated him for strep. But when the OCD became debilitating last year and we found PANDAS, we proceeded with blood testing that demonstrated he was reacting to strep . . . just not in the classic way. Who knows how long he'd had it? But once we started antibiotics, his OCD behaviors began to step down and strip away. Personally, I don't think that hereditary and PANDAS/PITANDS components of TS or OCD have to be mutually exclusive. My DS13, like your DD, has some hereditary markers for his OCD on both sides of the family. He also had some sensory issues (picky about clothes) and other "quirky" behaviors that sound very similar to your description of your DD. But it seems clear to me now, in retrospect, that it was the infectious agent (in our case, strep) that set the OCD in motion in a major way. And the antibiotics have helped reduce those behaviors over time. I might also add that, if you run a search here in the PANDAS forum for antibiotics, you'll see a number of threads with research and links discussing some other characteristics of antibiotics that may be coming into play for our kids. The fact that they can, in addition to fighting infection, contribute to immune modulation, glutamate modulation and decreasing inflammation. In the end, I would join WorriedDad and EAMom in encouraging you to have a few simple tests runs. They don't represent a major investment in time or money, or in trauma to your DD, but they may point you in a more definite direction in the end. Could it be "standard TS"? Maybe. But information is power, so you'll be better armed to help your DD, it seems to me, if you gather everything reasonably possible in your search to help her. Good luck!

Actually, up 'til now, we've only been taking 500 mg. daily. I thought I might up the dosage if we see a bug going around the neighborhood or in the office, kind of like we used to pop echinacea when cold a flu season started to infringe on our social and business circles. Yes, I would say both DH and I both seemed more susceptible to colds before OLE, especially since we're both impacted by seasonal allergies. The other thing I've noticed for myself, for whatever reason, is that my digestion seems to have been positively impacted. No idea why that would be the case, but I've proven it to myself by taking a 2-week break last month. Thought maybe we'd save some money and cut back on all these supplements and vitamin store bills. But my gut seemed to miss the OLE, so that was a main reason I went back to it.

Keeptrying -- Well, we were SIX years out from our DS's OCD diagnosis and yes, PANDAS treatment has still helped tremendously. We, too, had asked about PANDAS when the OCD diagnosis was first made at age 6 and were waved off . . . not because they tested him for anything, but because our doctors didn't believe PANDAS to be a valid condition. We began antibiotics almost exactly 6 years after the OCD dx, and he responded very well initially, with a definite slowdown of the pace of the positive impact over time, but definitely still a measurable impact. We're now coming up on our one year anniversary of abx and considering tapering, but, to some extent, we're afraid to mess with a "winning combination" of all the treatment components we've cobbled together over the last year. That being said, I still personally think that perhaps for some of us who came belatedly to the PANDAS party, there may be some organic changes to the brain or, at the least, behaviorally-ingrained issues that it will take more than antibiotics to set aside. So we load up our arsenal with weapons of all ilks: abx, therapy, supplements, and, in our case, a low dose SSRI, as well. We don't have tic behaviors, however, and from everything I've read over the last year or so on this forum, it seems as though tics might be one of the PANDAS behaviors that can take the longest to eliminate. I'm sure some others will chime in here. Good luck!

Well, you've just validated NorcalMom's post; this definitely does seem like an ideal news item for Jon Stewart! Or Stephen Colbert!

My understanding is that it some active agent in olive leaf is a natural antibacterial agent. But from reading a previous thread here about it, it seems that you would have to consume it in some very potent concentrations (with a price and accessibility factor attached) to get the same efficacy as a full-dose antibiotic. I searched for that older thread, though, and I can't seem to find it now. Perhaps it was removed for some reason? Hopefully the poster is still hanging around and chime in for you. Perhaps, though, it can help in the place of a prophylactic dose? We're erring on the side of caution so though DS13 continues on full-dose antibiotics for another while yet, DH and I take olive leaf extract daily. I don't have any measure of its true efficacy at this point, except to note we haven't caught anything since we've been taking it (knock on wood!)

I can second Kelly's statement. My DS13 was "never sick," either. Week after week in the winter-time, at preschool, kindergarten and first grade he'd come home with a form letter from school, saying that another child in the class had been identified as having strep, so watch for fever, sore throat, etc. DS never showed any sign, never even felt "off," but DH or I would come down with a classic, painful case of strep throat within 7-10 days following the notice. That was until, of course, DS started washing his hands 40 times each day and was diagnosed with OCD. Because he never tested positive for strep via throat culture, we went for another 6 years thinking we were dealing with OCD, not PANDAS OCD. And then he "fell off the edge of the planet" in terms of the magnitude of his OCD about one year ago, within 4 weeks of the one and only strep notification we've ever gotten from his junior high, and we couldn't get him back to the way he'd been before: OCD, but functional. So, we went with high-dose antibiotics and he began to "come back," slowly but surely. We continue with standard OCD treatments, too, convinced that those 6 years without PANDAS intervention probably have played a role in his neural pathways so antibiotics alone probably will not do the whole job. But they have definitely become an important part of the treatment protocol. All us crazy ( ) PANDAS parents are saying is . . . what's the harm in investigating it? You've upturned every other stone trying to find the best treatment for Jaylen, so what's one more? And think of the possibilities!! I will be forever grateful that my family, despite 6 years of being told by very reputable professionals that DS had OCD, "only OCD," and that was that, found PANDAS, found this supportive forum, and gave PANDAS treatment a shot. I'd hate to think where we might be today if we hadn't.

IEP's are federal, also, but I'm not sure either plan (504 or IEP) is automatically "transportable" between schools, states, etc. I know some people have had trouble "moving" both types of plans from state to state. 504's are generally less cumbersome for districts to grant and maintain, however, so maybe that leads to more acceptance when a family attempts to "transport" one into a new school. Since IEP's entail actual federal funding, however, there's considerably more paperwork and documentation that has to be done to back them up, so maybe that's the real rub in terms of a school's willingness to readily adopt an IEP that was designed elsewhere. From our experience (we had a 504 3rd through 6th grades and just moved to an IEP last year, 7th grade), 504's tend to be "less intensive" in terms of the breadth of accommodations. Part of the reason is that there is no direct funding on a per-kid basis for a 504, so while you get accommodations within reason, your child does not have access to "services," i.e., regular sessions with the school social worker or psychologist, a case-worker on site, or a Special Ed classification. The IEP, meanwhile, can stretch the boundaries of accommodations further yet and includes what the district might otherwise consider "excessive absences" and the like. It also grants your child a case worker on site who's job it is to ensure that the accommodations are being consistently granted by all your child's teachers, to help advocate for your kid when they run into an issue with an unyeilding teacher or part of the cirriculum that trips them up, etc. Again, our experience was that the 504 worked fine for our DS when he was younger, but junior high is such a different world. When last year's massive exacerbation hit, the 504 didn't protect him adequately, and because of his chronological age and the nature of school by that point in time, the typical expectations are that parents are best "unseen" and "unheard;" they want the kids to look after themselves, advocate for themselves and answer for themselves. So we weren't immediately and readily "welcomed into the loop" as we would've been in the grade school years. We sort of had to barge in, in fact. But the IEP really helped us get him back into school with no major negative repercussions.

That is ODD! On top of the whole issue of the funding really being needed at home to help solve health issues here (hey, once we figure it all out, I'd be happy to see us export the new treatment/medicine/research around the globe, but it is OUR National Institute of Health, after all!), how did NIH spending $800,000 in Africa stimulate OUR economy? Isn't that the whole point of the stimulus bill? I feel another pointed letter to my senators coming on . . . . !

Hi DCMom -- Firstly, if you Google "IEP," you'll find several web sites that will literally list the federally-protected rights granted via an IEP. Sorry, I don't have them handy, but they really are easy to find. Maybe someone else here has a link ready to share. And yes, "excessive" absences are covered. Basically, having an IEP classifies your child as Special Education, and Special Education, as told me by our district's Director of Special Services, "trumps all." It trumps standard attendance requirements, grading requirements, etc. And yes, it should trump spelling concerns, too. I understand that a LOT of very famous authors are horrendous spellers, so I really don't get why they would preclude your DD from the honors program based on that alone! Seems a little odd. Since our kids are guaranteed by law the best education available in the least restrictive environment possible, it seems to me a kid who's "gifted" in every respect linguistically but has a current (perhaps momentary) challenge with spelling, should not be exempted from at least being given a chance to participate in the more academically challenging cirriculum. My DS13, also in middle school (8th grade) and also a "twice exceptional" kid . . . he has an IEP and he's in the school's "gifted" program, which I think must be similar to your school's "honors" program. His gifted teacher is awesome and cuts him a lot of slack with respect to HOW he performs his assignments, but he's still expected to keep up with and complete the assignments; so I have to believe she would have no problem if his spelling was sub-par. His IEP permits him to type instead of handwrite (his handwriting takes a toll, especially during exacerbation, and as a result, he's become a champion typist!), it gives him extra time for assignments and tests, it gives him a case worker on site who can help him advocate for himself with his other teachers, it permits him to be tardy to class in the event he needs extra time to organize his materials or ask his teacher an extra question about homework, and it gives him an alternate activity allowance for gym (still cannot stomach going into a stinky locker room with all his classmates). All of these are on top of the basics of the IEP/Special Education federal requirements which protect him in terms of absenteeism, etc.

Sorry, Peg! I'm sure many of us can relate/empathize, but that doesn't necessarily make your going any easier, does it?! I have the same situation with my pediatrician, but I think the nurse has finally gotten a clue. Now when I call, they don't even try routing me to anyone else. They just know I have to talk directly with the ped because no one else is going to understand or "go along with the program." Lots of cyber-hugs for the rest of this week and the weekend. Take at least one each day!