MomWithOCDSon

Interesting . . . we just saw Dr. K. in person 3 weeks ago, and this terminology never came up. Rather, he just gave us a prescription/order for the normal immune panel, plus ASO and AntiDnase B. Maybe he's hit upon a new protocol? Or something about your history calls for something atypical? I'll be interested to hear what anyone else may know about this, too!

Our DS has always had some seasonal and environmental allergies -- dust, pollen, mold -- but this year, they seemed to hit him particularly hard. Because he was already in PANDAS exacerbation, perhaps? Anyway, via another thread here on the topic, we got some great advice: start his day out with as low an "allergy load" as possible, and work to keep it low throughout the day, so that the child doesn't get "topped out" and further exacerbate the PANDAS behaviors/symptoms. So we shut the house up and filter all of our indoor air . . . even on nice, moderate days . . . through our HEPA-filtered HVAC system. It's amazing how much less "dust" (more accurately, a mix of dust and pollen) we can see laying on our furniture as a result! We've doubled his quercitin supplements. And he gets a 10 mg. Zyrtec gelcap every morning, and a Benedryl capsule every night, in addition to his other supplements, abx, probiotics, etc. His allergies have backed down considerably in the last few weeks, and so have some of his most problematic PANDAS behaviors. It may be coincidental, but then again, it may not!

Another "Yes!" vote here, too! DS was always good at math and has been in an accelerated program since 4th grade. But when the exacerbation struck, he couldn't think, couldn't organize his thoughts, couldn't put them down on paper, couldn't stay focused on a multi-step problem long enough to bring it to its conclusion, etc. Since we began abx treatment, though, he has steadily improved. Where I used to have to talk through every problem with him and frequently even write down his verbal responses on his behalf, he now not only works through all the problems on his own and writes them out himself, but he does it in record time! It will come back. I think math is one of the first things to "go" and one of the most extended "returns" because of its nature; it requires an ability to do multi-steps, to organize, and those are two of the skills my DS lost most dramatically to PANDAS. But it's coming back . . . . !

LOL!!! I've been saying that for months! If I have to deal with OCD, can I PULEEZE have just a touch of the cleaning compulsion? Of course, I say that as someone who has obviously NOT dealt with it. I'm sure if I had a child with it to the extreme, it would be equally upsetting Ooohh!! Be careful what you wish for! The OCD cleanliness thing can be a slippery slope! Not to mention, frankly, it can result in the kids being wary of touching things that may be dirty/contaminated, or setting them to ordering or lining up possessions, but it really (unfortunately) doesn't manifest in them being "cleaning freaks." Mostly, they just want to make sure YOU'RE keeping everything clean on their behalf ("Mom, what's that speck on the kitchen floor? Is that mud?") Now, I do recall that, as a toddler, the vacuum was DS's best friend! He LOVED that thing! Loved using it, riding it! I had the best vacuumed house in three counties!! But I honestly think that was a sensory thing at that point, as opposed to an OCD thing.

Wow! I had no idea until now that NAC helps with the gut issues, too! I guess we'll try stepping it up a bit from the 500 mg. daily we're currently giving and see what kind of results we get. Thanks!

I would think either a switch or a too-low dose of any antibiotic could result in the behaviors creeping back in. That has certainly been our experience. Our DS13 does not seem to respond to 500 mg. Augmentin (or amox-clav) in any positive way. Anything lower than 875 mg. twice daily results in a significant increase in his OCD behaviors, and even this level has not proven to be ideal for him. He is at his best while taking the 1,000 mg. Augmentin XR, the time-release formulation of the amox-clav "marriage." Why, we don't know. But it's proven out time and again as we've tried reducing his dosage and/or even stopping it altogether.

Michael, Nancy and anyone else who's using NAC on a regular basis for OCD behaviors: What is the dosage at which you see the positive impact? Someone mentioned "high dose," but I'm not sure what that means. We are currently giving DS13 500 mg. daily; wondering of increasing that would be beneficial to him. Thanks!

We've been NAC for about 6 months now. Honestly, it's hard to measure its impact because we neither added it nor have given it as an isolated element; DS13 takes it alongside lots of other supplements, including Inositol, which is also supposed to act as a natural SSRI and assist with mood and OCD. That being said, I can tell you that there have been no negative side effects so far was we can tell.

Congratulations, Kara! ERP is hard work, especially for an 8-year-old! I'm sure being able to ride by without collapsing was a reward in and of itself, but sweetening the pot a little with an ice cream cone or a favorite dish for dinner never hurts! And a glass of wine for Mom, too, while you're at it!

100%?!?! This is awesome news! Remind me, please, how old is your DD? And what is your post-IVIG treatment? Are you on low-dose, prophylactic abx, or continuing on with high-dose like XR for a bit? Thanks for the good news!

Yes. Basically, Dr. K. wants to take the child a bit off-guard; his theory (well-held, I believe) is that our kids -- especially the high-functioning ones -- can successfully mask their symptoms and "be on their best behavior" in front of a new adult, doctor, person of authority, etc. for the short duration of the appointment. So, he tries to throw them off so that he can peek behind that facade of politeness and suppressed emotion and see who the kid really is, and how he/she really reacts to different situations. I'm not sure what he does with girls, but for boys, his current routine seems pretty standard; he brings in a Barbie doll in her box, and asks the boy if he wants to play with her. Then he goes on for a bit about how he loves Barbies, how he has x-many in his collection and which clothes he likes, etc. Our son turned to look at me as though thinking, "What quacko-whacko have you brought me to NOW, Mom?!?!" Then he may ask them some other sort of off-the-wall questions that come out of nowhere (non-sequiters), etc. In this way, says Dr. K., he gets to assess if the kid is anxious, age-appropriate, atypically dependent on parents or siblings for his/her age, etc. Then, after spending some time warming up the kid and talking to them about what they're thinking and feeling, he sends them out of the room with some paper and a quick small-motor assignment (writing/drawing) while he spends some time talking to the parents.

Heat reduces inflammation?

I don't know of any sleep studies, but I do know that most of our PANDAS kids seem to have trouble with both falling asleep and staying asleep during exacerbation. Interestingly enough, my DS13 shows a marked difference in his sleep habits according to what level dose of abx he is currently taking . . . not just whether or not he's on it at all! It is quite the mystery! Saidie, in your shoes, I would definitely call either Dr. T. or Dr. K. and set up a phone consult to get things moving with your child. It's hard to accept that there's no doctor in your area who will help you with even trying the abx, and you may just not have unearthed him/her yet, but I wouldn't hesitate to reach out to one of these two who have a regular phone consult practice. You and your DS need some sleep!!

Meg -- Many of us find a number of supplements helpful. Omega 3's are good for their anti-inflammatory properties. Curcumin/tumeric is another natural anti-inflammatory, as well. Inositol (beginning with a low dose and working gradually upward) can act like a natural SSRI and help relieve some anxiety and anxiety-related behaviors. Vitamin D3 is another good one, as is a good B-complex. I also just realized your post is titled "Help me understand treatment vs. recovery." From our own experience as well as what I've read here and learned elsewhere from other PANDAS families, every kid is different. The fact that your DS is still quite young (4), and you've gotten the diagnosis already, might well mean your required treatment will be of shorter duration necessarily, and recovery could be relatively quickly on the heels of that. Anecdotally, at least, it appears that the sooner and younger PANDAS is identified, the more readily they respond to treatment and, maybe even more importantly, the shorter time they have for developing "coping behaviors" by way of OCD or anxiety that become harder to break the longer they are practiced. All of that is generalization, though, and, again, purely anecdotal on my part. It will also depend on the overall health of your son's immune system (is it just elevated titers, or does he struggle with any immune deficiencies in addition, etc.?) and the opportunity for re-exposures to strep or other infectious agents that could exacerbate his condition over the next few years. What does recovery look like? I think, generally slow and "saw-toothed," from what we've seen; again, it seems to vary with respect to the overall health of the child and his immune system, what, if any, comorbid conditions may exist (some PANDAS kids were first triggered by strep but then find they "flare" when exposed to other bacteria, viruses, even immunizations), how long the child has gone without medical intervention for the condition, how many exposures and/or exacerbations they've endured, etc.

My DS is also entirely classically asymptomatic for strep, and cultures tend to come back negative. But his titers are elevated nonetheless, so he's contracted it and is fighting it . . . or his immune system has gone "whack" and continues to manufacture the antibodies, even though the infection might be "ancient history." Like so many things with PANDAS, the jury is out, at least for the time being. If you continue to browse through the threads on the forum . . . especially the "pinned" ones at the top, you'll see a lot of high-level, scientific discussion regarding PANDAS, why the symptoms and timing might manifest as they do, what's a play, etc. I'm so far from understanding it all myself that I'd only embarrass myself if I tried to explain it here, but the bottom line, it appears is inflammation. Inflammation is rarely a body's "friend." It causes many physical ailments, and it appears to cause a myriad of mental ones, as well. My DS, to my knowledge, has not had an active strep infection for over 7 months, and yet he still requires antibiotics. When we try to decrease them, or remove them, his PANDAS behaviors return with greater severity and frequency than they are while he's taking the abx. Are they keeping the antibodies at bay? Do they have immune modulatory affects all their own? Do they have anti-inflammatory properties? All of these possibilities have been hypothesized, and some of them are under active study now. Unfortunately, the science behind all of this stuff remains in its infancy to a great degree.

From our own experience and in reading many of the posts here over the last few months, it seems that many of our PANDAS kids have some autism-spectrum challenges when it comes to learning; that's not to say that they are autistic, but just that their spacial, verbal and other "categories" of learning can mirror those found in autism testing. Our DS, also, is brilliant at math and it came naturally, while reading and writing was much more of a struggle; his memory, too, particularly long-term, is stellar. The writing continues to be a challenge during exacerbation, as his small motor skills deteriorate, which is also a common PANDAS symptom. With respect to the reading, I've mentioned this book before so some of you will just have to sigh, "Not again!" and pass by this post. But we had lots of success implementing some of the tools found in Right Brained Children in a Left Brained World: Unlocking the Potential in Your ADD Child by Jeffrey Freed. Freed is an educator who's basic thesis is as follows: kids who are labeled with ADD or ADHD do not have a behavioral "illness" that requires treatment. They have learning differences that fall on the highly functional end of the autism spectrum, and they just need to be taught differently than other kids. He describes right brained kids as being "whole to part" as opposed to the left brained "part to whole" model, so, when it comes to reading, phonics don't work very well because they have trouble turning all the little vowel and consonant "parts" into "wholes." But because these kids have phenomenal memories by and large, they can learn to read very efficiently by making the most of those memories, by working more at learning the whole words, rather than insisting they break them into their phonetic parts and sound them out. Stuff like that. Anyway, I think the book is genius, and we were able to teach our DS to read very quickly with Freed's techniques. The understanding and techniques have also helped us in the ensuing years, especially when DS felt as though he wasn't grasping something as quickly as his classmates; we were able to "rework" or literally re-order the lesson and/or materials and present them in a way that made more innate sense to him, and then he was off and running! Then, interestingly enough, six years later, DS was tested for his IEP and was found to have some "spatial learning differences" that, drumroll please, would put him close to lying on the highly functional end of the "autism spectrum." To which we said "Duh! Freed beat you to it!"

We have been on a very similar road with our DS13. Yes, I think the key is to have someone on the school end that your DS feels he can turn to, rely upon, when he gets overwhelmed. It is SO important to have support, especially at this age when they're already flooded with hormones, etc. and feeling as though ALL their behaviors are on full display, even when they're not PANDAS behaviors! We took our DS back to school very slowly after we'd pulled him out and home-schooled him for just over a month during the height of his illness. We started by taking him back to his least demanding period of the day: his resource class with his IEP case worker. The man is a god-send, and DS engages so well with him. That class period was after lunch, with only 3 more class periods in the day afterwards, so we sort of inched up the school day "backwards," adding one period and then another very slowly over the next few weeks until he was in full time. But it took about 3 months to get him all the way back in, and he still doesn't attend gym (too many triggers for his OCD). Since you're so close to the end of the school year, it isn't likely to work to work him up to a full day, but if you can just get his body into the building each school day, even for a short period of time, it will set a better stage for the next year. Does he have an IEP and a case worker? If so, that person should be able to help you. Does he have a favorite class? Maybe you start with that one. Sorry, I know it's tough. But from experience, I think the longer he stays away, the harder it is going to be to go back, especially since he's developing lots of self-awareness in terms of what his peers are noticing and commenting on. But if you can get some good support on the school end . . . even if it's just one person (you said the principal was good with DS?), then that might be all you will need if you move slowly.

Boy, that's the million dollar question, isn't it? I keep coming around to the same question for my DS on the OCD side of the spectrum; how do you know if a child has OCD vs. PANDAS? And, like your son, my DS had an almost miraculous response to abx the first 3 months or so, but that impact seems to have waned substantively. I keep reminding myself . . . by keeping a journal, noting his snail-paced progress, watching his handwriting and homework, etc. . . . that he IS still improving over where he was about a year ago this time, but it is now a crawl instead of a jog. So you start to wonder . . . IS it PANDAS, or is this just the way it is, for a lifetime . . . a psych diagnosis (in our case, OCD, in yours, TS). But, I gotta tell you, the more I read and the more I hear, I'm just not sure that there's anything legitmately "regular" about either TS or OCD. I'm not convinced that most of these "behaviorally-classified mental conditions" are not entirely responses to inflammation which triggers or exacerbates a genetic predisposition. And for what it's worth, I ran that past Dr. K. when we saw him a couple of weeks ago, and he agreed that there is almost certainly something genetic in the genesis of PANDAS, and that inflammation may be at the root of so many behavioral manifestations, but there's a lot we still don't know. Also, for what it's worth, we disclosed to him that DS has been on abx (Augmentin XR, almost exclusively) for the last several months and showed him some dramatic handwriting samples of "before abx" and "after abx." We also noted for him, however, that their dramatic assistance to DS seems to be on the wane. It is his opinion that the effectiveness of abx will eventually wane for almost all PANDAS because the abx alone cannot keep up with the pace of the underlying auto-immune condition; that DS will eventually become overwhelmed by the auto-antibodies despite the abx unless the immune system is entirely "rebooted." Personally, our jury is out on that for the moment, but we continue to watch and listen and learn and consider the long-term . . .

Chantal -- Like so many on this board, your son and mine might be "twin sons of different mothers." My DS did not, so far as we can recall have an "overnight onset," either, and he's always been "different" from his peer set, too. He began with anxiety and sensory issues, we believe, at about 3, and it seems to have ramped up from there. At 6 he was diagnosed with OCD. He also has some ADD or ADHD behaviors, but rather than tics, he's now dealing with OCD behaviors. We had to pull him out of school last fall because of overwhelming anxiety issues, separation and otherwise. Long story made short, we've had him on antibiotics since last October, and he is slowly but surely improving. He has setbacks, and we are constantly questioning ourselves, but he is 80% better than he was a year ago now, and because of several cut-out-the antibiotics trials we've done on our own, it seems irrefutable that it is the antibiotics that have turned him around and continue to help him, and that he does, in fact, have PANDAS, despite being entirely asymptomatic for strep or any other significant illness. Just 2 weeks ago we finally sought out the advice of one of the doctors with a broad basis of experience treating PANDAS -- Dr. Kovacevic -- and we are moving forward with some immune testing, etc. to confirm the PANDAS diagnosis. Since your DS has a documented history of both Lyme and strep, PANDAS/PITANDS seems like a distinct possibility, and I would explore it further. Seek out one of the doctors noted here on the board with experience in PANDAS, or perhaps your biomedical doctor is in "the loop" and can at least help you get started. Testing again for Lyme, ASO titers, AntiDnase-B and a standard immune panel might be one place to start. It might also be interesting to see if, given a weight-appropriate dose of an over-the-counter anti-inflammatory like Ibuprofen, your DS's behavior might improve for a short window. Good luck to you! This board has been such a wealth of opportunity, advice, solace and comfort to my family for the last 7 months, so I'm certain you will learn much here and have doors open before you that will make your journey a bit easier.

That's a tough one because it seems as though your DS really WANTS to do all these things . . . he just can't handle everything if he tries, and it seems as though homework/academics (probably because they're harder for him) wind up getting the short end of the stick. We face this with our DS13, even though he's not the athlete your boy appears to be. But just fitting in all the academics and homework, plus some sort of physical activity (our DS is a swimmer) for exercise, doctors' and therapy appointments, and some truly necessary "down time" so that the stress doesn't turn into volcanic proportions . . . . that's a very tall order! I marvel at some of DS's classmates who, in addition to school, are in every club imaginable, every sport offered, plus other extracirriculars like music/band/orchestra, martial arts, etc.! I do not know how these over-scheduled kids do it, but some of them really seem to thrive on it! Not my kid! If he doesn't get his sleep and his downtime, it is literally heck to pay! I'm thinking maybe your DS is too young to be expected to prioritize appropriately, so there's nothing left but for you to do it for him. And maybe, just like any other kid, PANDAS or not, he's going to have to get used to the idea that he can do everything he wants, but he can't do them all at the same time! Sacrificing homework now and again because he has a late game or whatever seems like a fair call, but he needs to know it can't happen all the time, and there may be nothing but for putting it plainly on the table that if he wants to play sports while he's in school, etc., there just may not be time to play a game or ride his bike, certainly not every day. Because school, and everything that comes with school (like homework) is a priority. I know what you mean about karate, too; we explored that because I thought the whole mental side of martial arts would be really appealing to DS. But it seems most of the studios are pretty serious places, and kids are in there 2 to 3 times each week. Plus, in our case, DS cannot tolerate feeling as though he is at all "behind the curve" when it comes to learning something new, so he would've had to be practicing even more than that to stay at the top of the class, and that was a non-starter for us! Finally, as for a psychologist that understands or knows about PANDAS, I'm not sure that's a necessity. A psychologist isn't going to prescribe medications or anything, anyway; he's just helping you with the behaviors and the feelings that dealing with PANDAS are generating. So I wouldn't get too hung up on finding anyone who "buys into" the PANDAS scope of medical treatment, but focus more on finding someone who 1) is well-versed in your DS's primary behavior type (OCD, ADHD, etc.) and 2) has a good rapport with your DS, since trust and a desire to work toward goals the therapist sets are key, especially for younger kids.

PANDAS and all the ancillary crap it brings to the picture negatively impact EVERYONE in the family: DD/DS, you, siblings, DH. No one goes unscathed. And it can isolate you from friends, the community, sometimes even family because, unless you're living it, it is very difficult to understand. That isolation, that frustration . . . there's more than enough to go around, for both your son and you. I'm sure you can tell from all the posts thus far that many, MANY of us know exactly how you feel. We've been there, done that. Some of us are still there, still doing it, too. Your son doesn't hate you. He hates the predicament he's in, and he's demoralized by it and doesn't know how to contend with it. What's more, he's just not emotionally or mentally mature enough to contend with it . . . at least not alone. So he's lashing out at the people closest to him (you) because, like all of us, you "only hurt the ones you love" because the ones you love won't leave you even when you go after their jugular. The ones you love will continue to love you, no matter what. They'll always stick by you. When my DS was 3 and 4, I would sometimes resort to dragging him, screaming and crying, down the sidewalk, home from errands or on the way somewhere (school, the store, etc.) because I didn't know he was sick; I thought he was just being willful and bratty. I yelled at him to "just cut it out!" As he got older, even after the OCD diagnosis, I would lose my patience with him badly. Sometimes we'd yell at each other, sometimes he'd go to bed crying, and sometimes I would. I couldn't understand why his OCD was in fabulous control one minute, and completely out of control the next, and it was frustrating and scary for both of us. I didn't understand what was happening, and neither did he, but now we do. Or, at least, we think we do. But through all that, he still knows that I'm his rock. That I will do anything for him. That, were it in my power, I would reallign the planets and make time stop for him (a frequent wish on his part! ). Now that he's older (13), we talk everything through . . . what's happening with him, what's happening with me, what we're trying now to help him, what we might try next, how he still needs to be accountable and responsible because he has a good set of capabilities now that much of his PANDAS is under control, etc. A lot of the "bad times," like some of the other kids here, he's completely forgotten. They never registered with his "real brain" to begin with, I don't think, because, at the time, the only parts of his brain functioning on any real level were the PANDAS/OCD parts. But even the bad moments he remembers, he's circumspect about now, in hindsight, better balance, and newfound maturity. And he knows that everything we've been through, we went through because he is loved. I'm betting your DS knows that, too, on some level. Also, like a number of other folks here, much of DS's counseling -- CBT and ERP -- has been "family therapy," too. We're all in this together, and doing sessions together in addition to his having some private ones has helped DH and me develop skills and tools for helping DS, and also helped us look into our own natures and see what it is we bring to the table that's truly positive and pro-active, and what baggage we bring from our own past experiences that we need to sort through and discard because it's only baggage, it's not helpful. Your son knows that you love him. And you can tell him again, today. And you can tell him that you were doing what you thought was best at the time, and now you have new, better information and you want to move forward with that. And you can tell him that you'll never stop until you've learned everything you can about how to help him, and how to help him find all the joy he can in his life. But as much as you can tell him, maybe what's even more important is that you can listen. Let him tell you how he feels. Let him rant at you if he needs to. Listen to him and validate his feelings. Listening is underrated, I think, because we're all so busy dispensing advice and encouragement all the time, we forget sometimes how much our kids just want someone to listen to them.

Sorry Danny's not doing well, and sorry it seems the Intuniv may be contributing. I think it works on the amygdula (?spelling?).

You're welcome, and I probably am, too (older, that is!) I got a bit of a late start on the whole "mothering" thing.

Mayber later tonight, when the kids are all tucked in, you can retreat to the bathroom, close the door, face the mirror, and . . . . "Ggggrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!" We're with you, and anything we can do to smooth your path, let us know. We probably ought to work out a "share site" for IEP's, 504's, school responses, etc. that we could trade around. Or at least collaborate on a book called something like, "What You Don't Know, Mr./Ms. Teacher, Can Turn My Child Off Learning Forever!"

One day down, one to go! You KNOW you'll make it through . . . every post I've read of yours puts your strength, wit and resolve on full display! Hang in there and know that you're probably more than halfway to the finish line! All the best tomorrow!