MomWithOCDSon

Really interesting! My son has frequently complained about various physical pains . . . arms, legs, ankles, feet, even stomach muscles . . . but as he's not especially athletic and we couldn't see any bruises or associate the pains with any particular activity, we, too, told him they must be "growing pains." But it makes some sense that it might be the strep, or maybe the inflammation that impacts the brain is also impacting other places/joints?! Can't believe it took me this long to put it together.

I have to admit, after hours and hours of that sort of chaos, I tend to just go silent. Nothing I say is going to change anything during a period like that, and I think my DS is on overload, too, and truly can't take in anymore information/data/ideas/comfort. We go to our separate corners . . . he to his room, and me to mine. And then, sometimes after 5 minutes, sometimes after 50, he's calmed down enough and so have I to either try and talk some of it through, or just have a long hug or cuddle and try to move on. I have to say, this process has become smoother and smoother as DS has grown and matured and come to understand that the OCD/PANDAS doesn't define him . . . it just overtakes him at times. Good luck, and hang in there. It WILL get better!

We get our D3 from Trader Joe's and they are very small, almost round liqui-caps/soft gels in 1,000 mg per. As they're barely larger than a children's aspirin and very smooth, I would think many children who are troubled by standard pills might still be able to get these down. 2,000 mg, eh? I guess we'll double our dosage!

I believe the holistic doctor advocated at least 1,000 mg/day, not just for our son (he's about 123 lbs.), but for my DH and me, as well. She said that both D3 and the B-complex vitamins are fairly depleted in food sources these days, so we really need to supplement, especially those of us living in more northern climes without a lot of sunlight during the winter months! I looked up the whole D3 thing on-line. Nearly all sources seem to indicate that toxicity levels would be difficult to achieve without scarfing down a great deal of supplements in a single sitting! I suppose dosing would be trickier for younger, smaller bodies, though, so hopefully either your doctor or someone else here can give you information for the younger set!

Yes, they are beautiful, but even more to all your credit, they look HAPPY! And in NYC, too! I found myself surveying the backgrounds of the pictures and the peripheries, not just for the billboard you pointed out, but for all the melee of items (handrails, benches, sign posts) and structures typical of a large, bustling city. Then, somewhere in the back of my head, I head my OCD/PANDAS boy's voice, were we attempting to enjoy ourselves with a trip of that ilk. Along about the moment of those photos, he'd be worrying about what he'd touched and how many other people had touched it and if it was dirty and when could he next wash his hands, and . . . . . . Enjoy your good times, and may they last and last!

If you stumble across that site again, could you pass the link on? Just based on personal experience alone, I'd bet good money he's right! I can't tell you the number of times our DS12 has been referred to as "a mixed bag." Depending on who's been evaluating him, they've noted OCD, ADD, ADHD, Asperger's, generalized anxiety, etc. We're putting all of our eggs in the PANDAS basket now, but all the behaviors, tendencies, etc. seem to be very interrelated.

I had a "holistic doctor" give me the same information several months ago, and I've had my son on D3 supplements ever since. She (the doctor) had said that it specifically needed to be D3, as opposed to any of the other D vitamins. Does that mesh with the advice you were given?

I recall another post a couple of days ago about this, and it was noted as a chorea movement. I guess there's a simple test you can do with your child? Have him/her stand against a wall, close their eyes, and raise their arms straight out, either shoulder-height or even over their heads. A child with SC (chorea) will appear as though they're playing the piano with their fingers. Did I get that right?

We see a lot of this type of behavior in our DS12, and he's pretty much been that way all his life, even though he's been in social situations like preschool/daycare (much to his chagrin) since he was 6 months old! As early as 2.5, we got reports from his teachers that he seemed to prefer playing alone, or just hanging around on the fringes of a group, watching but not joining in; they always commented that he seemed perfectly content, however. As he got older, he tended to do his own thing, maybe starting a new activity in a separate spot in the room from the other kids; then, when a peer noticed that DS was over at the other table, cutting shapes in colored paper, one peer after another might join in DS's activity, and he was perfectly fine with that. It just needed to be HIS idea, in HIS timing. DS12 has been diagnosed with OCD, and now we're exploring PANDAS, but I have to say that so many of these "You-Name-It-Anxiety-Related-Disorders" seem to have intersections of commonality. In the end, though, it doesn't necessarily matter which, if any, disorder it belongs to. You want her to be happy. Does she WANT to be social? Do you get the feeling that she's basically making excuses for not branching out, making more friends? Our son is, shall we say, very selective about his friends. Like your DD, he's very bright, and he likes having things his own way. So he tends to chose the most easy-going, maleable boy on the block with some common interests (namely, video and computer games) to be his best pal. When the OCD behaviors (like contamination) are raging, this friend doesn't mind being asked repeatedly to wash his hands, and when DS12 wants to demonstrate what an expert he is at something, this friend is willing to give him a few minutes of attention/adoration before moving on to doing something else that he would prefer to do. We're told that, at school, DS12 is well-liked, even well-respected because of his science and math abilities, and gets along well with others. But then DS12 will come home from school and complain that he has to participate in a group project that he would rather do solo because one kid isn't pulling his weight, and another kid doesn't wash his hands, and another kid is annoying, etc. My DH worries that our son doesn't have enough of a social life, but I'm sort of on the fence. I think he has about as much of a social life as he wants. He doesn't often express feeling lonely or wishing he had someone else to play or hang with, and when he does, he can usually get on the phone and arrange to make plans with one of the two kids he consistently considers friends. In the end, I guess what counts most is whether or not your DS is truly content, doing her own thing without the "interference" of peers, or if she's making excuses because she's too uncomfortable to be social. It the later is the case, then maybe a club or a park district class in one of her interests would introduce her to some kids with whom she would be more comfortable . . . on neutral territory and with a common interest?

In my state, autism qualifies as a lifelong disability which automatically makes you eligible for medical medicaid. They will pay for all kinds of services and therapies. And though the ABA folks have worked very hard to show it is the only "proven" therapy for autism (their research shows a wide variety of results, but there is a ton of it), it has been not effective (perhaps even detrimental) at all for my daughter. There really continues to be NO TREATMENT for autism, nada- send them to psychiatrists, educate them out of it....for my daughter nobody knows what to do, and they all think another field should handle it- and you get passed around. The bigger problem is, I think, physicians.....they see the autism as a finality, the "diagnosis" that explains everything. Honestly, I have heard the most assinine things from doctors.....Everything in my daughters medical history previous to finding her current pediatrician (when she was 10) was chalked up to autism. Wow, didn't realize I still had so much anger over this... They missed her chronic strep...all that drooling (because it HURT to swallow) was poor oral motor skills, The 3 days she couldn't walk, but dragged her legs behind her as she pulled herself with her arms- must be just fine, because its resolved now. She was sick ALL the time- "must be allergies" that happens a lot in autism. We were told she couldn't get a GI work up unless she complained of stomach pains....she couldn't express herself well enough to complain about anything! Sorry Vickie... Anyway, Our current (angel) pediatrician has been so good about trying to help us figure things out...still he sends us out to specialists with that same old attitude. Our local children's hospital is the worst, for specialists dismissive of autism. Hence, my thoughts that they should stop looking at autism as a diagnosis, and start seeing that its just symptoms....you look for a cause when you see symptoms. When you have a diagnosis, you think you found the cause! Wow, Peg, it really sounds like you and your daughter have been through the wringer! Not only is some anger warranted, it's probably one of the healthiest reactions you could have! It's motivating, isn't it? It certainly galvanizes me, especially when what's angering me is some "authority's" ignorance! I mentioned in another post this book "Right Brained Children in a Left Brained World" by Jeffrey Freed. I really think any parent who's had a kid who's been described with any autistic, ADD, ADHD or even PDD behaviors would find it enlightening and encouraging. In short, Freed's premise is that this prevasive tendency to label our children is borne out of an educational system that isn't equipped to deal with the evolution of our childrens' brain development over the last several decades. Our kids come into the world now with all this visual stimulation . . . black, white and red mobiles over the crib, Baby Einstein videos, tot computer games/programs, etc. And then we pack 'em off to schools where a predominantly 1930's-era, Germanic educational system ("kindergarten") expects them to be auditory, linear learners. So when they get bored, are easily distracted, can't follow all the verbal cues and information thrown at them, are more focused on dinosaurs than they are on the lesson in front of them, etc., they get labeled and diagnosed and recommended for therapies and drugs, etc. In other words, our kids are more "right-brained" than any generation before them, and if our teaching styles could just keep pace with the visual, whole-to-part right-brained learning model, there'd be far less dissonance in the classroom, far less need to label, and far less controversy over the labeling. And the far end of the right-brained spectrum, says Freed, is where the catch-all "autism" label resides.

I think this is SO true, in my experience, also. My DS holds it together for the 2/3 school day he's currently attending, trying his best to be "normal" around his peers and the teachers, and then he just comes home and loses it! There were times when, like you, the school staff probably thought we were kooks because we would insist on a meeting with them at the top of the school year to try and give them a little heads-up about the sorts of behaviors they might see out of him, and then it would be months and months sometimes before ANY of those behaviors actually surfaced in front of them! My son's IEP case manager had a great analogy for it. Imagine your kid's emotional/intellectual energy capacity is like a glass of water that he's constantly taking sips from throughout the day as he needs to draw on it for handling various situations. Depending on the situation and the state of the OCD/PANDAS, by the end of the day, and even sometimes before, his glass gets to "empty," and there's no opportunity to replenish it just then. So, he's literally out of gas, there is no more. At least not until he gets to come home, allow the dam to burst, hopefully get a good night's sleep, and tackle his life all over again the next day!

Well, he may have a touch of ADHD, it does run in the family, but it's definitely NOT Asperger's or Autism! I know that for a fact! Never ever has he shown any symptoms of either disorder. No, no, I didn't intend that at all . . . that he may have autism. Only that ADD, ADHD and Asberger's are all considered "autism-spectrum disorders;" way out on the far right end of the spectrum, you have the Big A - Autism. And then at various points along the spectrum, farther and farther to the left (aka, at least in terms of the U.S. public education system, "normal"), you'll find diagnoses like Asberger, ADD and ADHD. There's a GREAT book out there for parents of kids who have some of these tendencies, clinically diagnosed or not. It really explains some of the learning style differences, behavioral differences and, rather than labeling and going along with the idea that kids should be medicated for them, lays out ways in which their particular processing can be accessed to their maximum advantage. It's called "Right Brained Children in a Left Brained World" by Jeffrey Freed, and it is excellent!

Yes, when OCD/PANDAS is very active, our son is what we call "compulsively confessional." Sometimes, he'll bring up things that happened two years ago and tearfully confess them, sometimes for the second or third time. He, too, has had his moments when he seemed to be confessional mostly about "naughty" thoughts inspired by something he saw on TV or on the computer or in one of his computer games. It will distress him to the point of tears, no matter how much we remind him that this is the OCD talking, and it's okay, and thinking about some sexual/body things is normal for a boy of his age (he's 12 now, but I would say some of this began at least a year ago), but the OCD is making it bigger than it should be. Ultimately, when it's not been about truly harmful thoughts, when he asks if he can tell us something, or even if he doesn't ask first but just blurts out the confession, we'll say something like, "You know, I really don't need to hear any OCD confessions." It gets harder, though, when the thoughts and keeping the confessions in are obviously painful for the kids. After having been exposed for about a week to a group therapy program at which the more typically discussed issues were suicide and self-harm, rather than the anxiety that could contribute to those concerns (we'll NEVER do group therapy for him again! Aarrgghh!!!), our son started confessing to having all sorts of suicidal thoughts. It was the first time, ever, in his entire life and we KNEW he'd just been inundated with such ideas from this group and then his OCD grabbed hold of it for all it was worth because it helped ramp up his anxiety. We had to handle that more gently, but we just kept re-assuring him that this was the OCD talking; that it wasn't in any way "real" or authentic to who he truly is as a person. After a couple of weeks, those thoughts seem to fade away entirely, and we haven't heard anything of that ilk from him since. Because he was diagnosed with OCD long before we even knew about PANDAS, we have a long history with SSRIs. For us, they've been helpful. Lexapro was a godsend for almost 5 years, until this latest exacerbation.

Honestly, I'm no doctor, but it sounds a little more like an autism-spectrum issue like ADHD or Asberger's than it does OCD. What's not always commonly known about ADHD is that kids with this disorder can be extraordinarily focused on something of their choosing, for extended periods of time, and talk about nothing else, non-stop. I'm finishing up a really interesting book on ADHD written by a high school boy (can't remember his name at this minute) called "ADHD & ME." Our son had always been identified as having OCD, and it took the fresh eyes of a new therapist to suggest that maybe there was some ADHD in there, as well. Reading this book, I'm certain of it! Just a thought!

I have to say, this sounds very familiar. Long before our son was diagnosed with OCD, let along PANDAS, we saw a lot of this behavior. We initially thought is was just willfulness, "having his way," and "testing his limits," and we didn't attribute anything to OCD until a more classic symptom appeared (hand-washing). For instance, as young as 3, when we would pick him up or drop him off at preschool, he HAD to open the door himself; if we were coming in right behind another family and they opened the door for us as a courtesy, or if he was lagging behind and I got to the door first and pushed it open, he'd have a complete and utter meltdown. It was unreal. We eventually learned to just hang back if there were others immediately in front of us, so that the door could close all the way again and then he could open it himself, and to always just give him the opportunity to open it, even if we (his parents) arrived at the door first. We also didn't realize that we were interrupting "rituals" when we would try to hurry him along through washing up for bed, or getting dressed in the morning, etc. His rituals were never especially obvious, and he never counted things or arrayed them in a special order or anything. But if we called upstairs to him during one of these times, or walked in and, say, tried to get him to put on his shirt before his socks or something, he'd explode. OCD behaviors, whether they're OCD or induced by PANDAS, can creep in without you even hardly realizing. Like Suzan said, I would keep an eye on her and maybe keep a journal of if/when similar events take place. That way, you won't have to second-guess yourself as much. Over time, it will become more obvious whether or not these instances occur with any regularity and impact the way your daughter behaves in the world, or if its just a momentary "quirk," without pattern or need to be concerned. Good luck!

Thanks! I've heard of this somewhere else at some point, and I've very interested! In a PrimeTime Live episode on OCD not too long ago, they noted some research at the University of Michigan that agreed with this glutimate-based discrepancy in OCD brains. Has anyone actually tried this supplement? Any success? Any side effects? Any downside?

Melanie -- So sorry to hear about the bad day. I don't remember reading it before; how old is Danny? I'm still relatively new here, but I recall seeing several posts saying that therapies such as cognitive behavioral therapy (CBT) and exposure response prevention (ERP) don't work with PANDAS kids. I'd have to say that our experience is somewhat different, as my son has been receiving CBT and ERP off and on for the last six years, prior to our discovering PANDAS and even now, through being treated for PANDAS with abx. We don't look to the therapy to "cure" the PANDAS or even the OCD; we look to it to help him manage his behaviors while we give the meds a chance to kick in. And, IMHO, it DOES help. Classic to standard OCD therapy, he's learned that, while he might not be able to control the thoughts, compulsions, obsessions, etc., he CAN control his behavior -- at least to some extent. On a really bad day, he's less successful. But on a moderate or an easier day, it helps him get through his school day without being the "odd kid" or the "out of control kid." I would highly recommend therapy with a good psychologist who's knowledgable about OCD and who, if not entirely knowledgable about PANDAS, is at least open to it. I'm not sure how much that matters, just because the behaviors -- at least my DS's -- are so classic OCD, that a good therapist can help your child learn to contend with them, no matter what the genesis. And that way he'll be better able to cope in public places (like school) during this exacerbation and should there be any future ones, as well. Just my two cents! Nancy

yes, many of these kids have rages and crying spells that they did not have before PANDAS, mine included. Sometimes ssri's don't help pandas kids and sometimes they do. My dd was on zoloft for a couple years before we knew it was pandas. It helped at first then stopped working. then she started celexa which also helped some. Then we figured out it was pandas and we started her on 2000mg augmentin xr per day two weeks ago. The dr. did not want to make more than one change at a time so she is still on celexa. Antibiotics alone allow some of these kids to heal and some need more. We've also started her on 8000mg per day vitamin D (from the d3 family) and Omega 3's. Plus probiotics between antibiotic doses. Advil reduces her symptoms a lot so we giver her 400mg of that per day. We're getting by hoping for good news. I was thinking she had been on the antibiotics longer but it has only been 2 weeks 2 days at 2000mg per day so it's still early to tell. Angela Angela -- Curious . . . how' your dd doing these days? Are you still using both the SSRI (Celexa) and abx, as well as the supplements and Advil? We've only just begun and seem to be on a similar program . . . given SSRI's for what was diagnosed as standard OCD years ago and didn't want to stop them until we knew if/when abx would help. My ds is on Luvox and 2000 mg Augmentin XR/day. He seems to be improving . . . still some OCD behaviors but fewer and milder meltdowns. Nancy

Yes, we find that trading off works well in our family, also. I tend to have the faster temper, my husband tends to want to avoid, just like DS, so we're almost forced to all work together in order to get through it when the exacerbation is at it's height. My DS had a 504 in place from 3rd grade through 6th, and it really did help. It's not nearly as cumbersome in terms of documentation and testing as an IEP, but it granted him the accommodations he needed so that, when he was going through a hard time, he could make use of extra time for assignments or homework, untimed testing, additional breaks during the school day, etc. When we got to Junior High, though, the picture changed somewhat. Not only did 7th grade begin with a huge exacerbation period, but the teachers don't always communicate as effectively with the parents, and because DS's diagnosis is not well understood, some teachers and staff were of the hidden opinion (only just barely) that his parents were just making excuses for him, and that he was either a) lazy, unfocused or c) both. So we stepped up to an IEP this year. Once again, it's been really helpful. Now his math teacher eliminates about 1/2 the problems on a given assignment or test because she understands it can take him twice as long to do half as many problems, not because he doesn't understand or is unwilling, but because his processing requires so much more of him. And we're able to eliminate some of the "non-essential" components of assignments or get alternative ones so that his small motor skills (as in drawing, coloring, even writing) don't get over-taxed; he's allowed to type/keyboard pretty much all assignments other than math, and that has helped tremendously. Plus, with the IEP, DS was assigned a "case worker," which in our case is a wonderful, patient, open, humor-filled special education teacher. He's been a godsend for DS, helping him through the rough spots at school with grace and humor, and he's a great intermediary for us with the academic teachers when we want to advocate for an adjustment of an assignment or a longer completion timeframe. He's given us all some great analogies for what PANDAS and kids with other processing challenges go through: that their intellectual energy is like a glass of water, and it can only last so long -- it's not a bottomless lake. So it can get all used up by the end of a school day or even before, so to ask that same kid to go home and start all over again, with homework or whatever, without an opportunity to fully replenish that glass, is a losing proposition. So we still go through some days where homework or even leftover classwork is a huge bummer, and takes forever. But by tag-teaming, we get through it. And if anything winds up being just too much for that day, we know he won't be penalized for asking for another day to complete (so long as he emails his teacher(s)).

But our pediatrician suggested that we actually give our son a yeast-based probiotic (Flora-Stor) to help his gut during the antibiotic treatment; she said that the antibiotic will kill off other beneficial gut bacteria like acidolpholus. So, what probiotic would folks here recommend for a long-term abx cohort? I'm assuming some people are more sensitive to yeast than are others? Our son seems a bit more itchy than usual, but a topical seems to help that.

My son, too, was more emotional basket-case than your standard OCD or ticking kid when he was first diagnosed with OCD, which we now believe to be PANDAS. He was constantly melting down, and then on the heels of that, he would be inexplicably joyful, almost giddy. It would make you even consider bi-polar at times. We didn't recognize it as OCD/PANDAS until some contamination behaviors finally kicked in. But the inability to make decisions, touchiness, etc. . . . that's ALWAYS been there. What we've come to realize is that his meltdowns were usually associated with our unknowingly sort of "bursting his OCD bubble," interrupting a ritual that we didn't realize he was even engaging in, expecting him to make a simple decision that, as it turns out, wasn't simple at all for him at the time (like deciding which shirt to wear). Meanwhile, on the hyper side, it would blow us away when he would be all motor-mouthed, pacing and talking endlessly, sometimes less than 5 minutes after he'd had a major tearful meltdown over something else! It seemed like he was all over the place, no rhyme or reason. But I think that's what OCD/PANDAS does; it's not really coming from the rational, "thinking" part of the brain, so once the episode, ritual, meltdown is over, it's over! No residual regret or hang-up or anything. To this day, he has trouble understanding why it takes his dad and me so much longer to process and "get over" one of his meltdowns, 'cause he's over it the second he's over it!

All this hormone stuff is especially interesting to me, since my son's latest exacerbation -- after 5 relatively quiet, calm years -- seems to have come with his entrance to puberty! But, obviously, birth control pills are not an option for him! Any other ideas along these lines? Anyone else with PANDAS boys recognize the same exacerbation timing?

Advil. I've seen Advil and Ibuprofen over and over again on this board. So this morning, when my 12-year-old complained of a pain in his neck, I gave him one, 200 mg. tablet. Not only did his neck ache go away, but he settled right down to concentrate on some homework he'd been working very hard to avoid for the 1/2-hour or so prior to that! Maybe coincidence, maybe something else . . . . ?! When you advise Advil or Ibuprofen, what kind of dosing protocol would you suggest? And for how long? Are you using behaviors as your cue to dose, or are you using it prophylactically, as well?

Yeah, I do get that, and I agree. Just wish I'd known it THEN and hadn't maybe wasted the last 4+ years treating the symptoms rather than the cause! Aarrgghh!

Thanks again, Vickie. Of course, that's what we're seeking: that he can be happy again! I am thinking more and more that he is both PANDAS and OCD. It's part gut, and part information gathering. We didn't know it was OCD or PANDAS or whatever initially. I'd say when he was 2.5 to 3.0, we knew he was different from other kids. The term the psychologist gave him was "highly sensitive." He didn't like all the noise and chaos at preschool, and he preferred to play alone. He was very organized about his cubby: his coat had to hang on a certain hook, his nap-time stuffed animal had to be facing out, etc. But he never counted anything or "evened things up" or any of the other uber-eccentric behaviors I hear about with some other young OCD kids. The diagnosis came when, in first grade, he was eating lunch in the school cafeteria and dropped his spoon on the floor. I guess he became inconsolable over it and wouldn't pick it up, wouldn't allow the staff to wash it and give it back to him, wouldn't allow them to give him an entirely new, clean one. The principal took him into her office and he calmed down and chatted with her for a while. But everytime she asked if he was ready to go back to class and he'd say yes, then he'd go to put a foot out the door of her office and he'd collapse into tears again, unable to move on. She asked him if he often felt like that, and he said yes, so she called us. The school psychologist observed him in class, and we called his pediatrician, as well. Everybody came back with the thought that he was just a very bright, sensitive kid. But within about a week, we noticed his hands were red, almost raw. We asked him if he was washing them a lot and he said, "Maybe." So then we interviewed his teacher; apparently, he was washing them at EVERY change in activity throughout the school day. Between math and reading, between reading and gym, between gym and art, etc. It was his way of transitioning his brain, it seemed. That's when the light bulb went off in my head. So we took him to a child psychologist who confirmed: it was OCD. Anything raising a red flag for you in that chronology?