MomWithOCDSon

I am always amazed when I hear about schools reluctant to grant 504 plans, namely because it really doesn't cost them anything but the time for a meeting, typically once each year. It doesn't make any particular services (school psychologist, for instance) available to your son or anything like that, so it's ridiculous to me that a district would "withhold." The only thing I can figure is that they're concerned that a 504 might be a "gateway" to a more intensive IEP, which would require them to spend some time, money and services on helping your child in the school environment. So, even though he does okay academically and most of his symptoms don't seem to show up at school, is there any chance they interfere with standard "measuring" of his performance, aka, statewide standardized tests required for federal funding, Every Child Left Behind, etc.? Looking back on it, I think that's why my son was so readily granted a 504 in third grade . . . because his anxiety prevented him from performing well on timed tests, and the SCHOOL (more so than we) wanted a 504 plan in place so that he would legally be granted untimed testing, resulting in better test scores for the school! Maybe this is an angle you could try to get some traction on the 504?

I think a psychologist/therapist is a great idea, as well. We've worked with one to re-integrate our son back into school after having had to pull him out for a while a few months ago. So far, so good! Also, though I can't remember the details of your son's PANDAS symptoms, is separation anxiety the primary issue? Or does he have other symptoms that interfere with his participation/progress in school? Have you considered a 504 plan which would provide some accommodations for him?

That is wonderful news! I'm still figuring out all the pieces to this PANDAS stuff; what is "Y-BOCS"?

Another ditto here! I'm sorry to say that our DS12's exacerbation had gone on for closer to 5 MONTHS before we intervened with abx, and we saw results in TWO DAYS! That's not to say that they all "stuck;" we're still going through the saw-toothed recovery nearly 3 months later. But as you've noted, the meltdowns get less severe, shorter, and more easily recovered from. It's practically a miracle!

Yes, but in our case, it's been for the better!

I can't remember, is your son on any medications currently? Many can increase hunger exponentially, plus, as you've noted, he's entering teenage-hood, and to some extent, more eating comes with the territory in our experience. Though I think some of the other folks have made a good point in that regard; it might be time to get the snack cakes and simple carbs out of his reach and put some more fruits and protein options within easy access so that at least he's munching on some healthier stuff.

What a great question! I wish I had a great answer in return, but I, too, have been wrestling with this. Our son was on an SSRI (Luvox) prior to our discovering PANDAS and treating with abx, so in the interest of not changing up too much at one time and risk throwing him into a worse or even continued quandry, we've kept the SSRI level while adding the abx. I have not seen the SSRI making any issues worse; he has only been improving while on the abx. In his previous life as an "OCD kid," our psychiatrist was always interested in weaning him off his pscyh meds when he would achieve and maintain a "level," waning period, so I know that he is on board with getting my DS off of these meds in the event it is clear he's no longer in need of them. So, despite his skepticism regarding PANDAS and the efficacy of the abx, I will not have a problem acquiring his help weaning off the SSRI once DS reaches equilibrium again. That's my plan for now, anyway . . . .

Gat's Mom -- On a previous "Augmentin XR" thread here, it was noted that XR should be given immediately before a meal, as opposed to after it. I've not circled back around to research the efficacy of that, or to see why it might be the case. But our DS12 is very sensitive to stomach and elimination issues, also, and we're finding that taking the XR before he has his meal, eating, then taking his other supplements, and giving him probiotics in between XR doses, is working well now. We're also big on bananas and apple sauce because he's more afraid of diarrhea than he is of vomiting, and the diarrhea seems to be the more eminent threat for him, typically.

We do Trader Joe's "Super Acidolpholus Complex" in the morning, and FloraStor in the evening. At about $1/capsule, FloraStor is definitely on the higher cost end, I think. Sounds like maybe we could get it less expensively at CostCo, though. Thanks for the tip!

So, do you know how long it took him to get back to normal after they figured out it took 2000mg of Augmentin xr? Did it take the whole year? I think it was a year plus, honestly. Because initially when they would step down a dosage, Sammy would decompensate with some returning behaviors and they would have to hold on tight and soldier on while he adjusted to the new dosage. I remember in the book Beth making the comment, toward the end of his "recovery" that they lowered the abx dosage again and even though it was tough "Sammy was determined" to make the lower dosage work. I really don't know what to say about that because we haven't come to that part of recovery yet, and everything I'm hearing about PANDAS behaviors is that they are, by and large, uncontrollable in terms of sheer will. Yet, what I know of OCD behaviors via my son and thus the way I interpret some of Beth's documentation of Sammy's journey is that some of the behaviors and anxiety over the behaviors and trying to bust past them, back to his former life, had become somewhat "learned," and he needed his will, therapeutic help, etc. to dispense with those coping behaviors even after the abx had done most of the job with respect to healing his brain.

Sorry, Renee, but I can't remember what your DD12's primary behaviors are . . . you mention anxiety. Are there tics? OCD? Separation anxiety? Is she currently taking antibiotics? Or any other meds? Is she being tested for strep when the cycles occur? Based on experience with my DS12, I would say 2-week or even 4-week cycles seem very short, especially if they do not coincide with a medication cycle; I could understand her improving for 2 weeks while on abx, and maybe even "holding" for a week past that. But if there's no medication in the picture, then that seems like short-cycling for PANDAS behaviors. I suppose if she is constantly being re-exposed to strep, it's possible. But then it would seem as though she might be being exposed in the home.

I double-checked with Beth Maloney on this topic recently so I would have some in-the-trenches information for our pediatrician. Here's her response: In a nutshell, Sammy was on Augmentin XR at 2000 mg for a full year because every time we tried to lower the dose he had behaviors. Yes, primarily the behaviors are the clue. After a year, he was able to go to 1000 mg (the Fragile Balance). He stayed there for three more years. Then he went to 500 for three months, Then off entirely but back on at 2000 mg for two weeks when exposed to strep. I can't wait to hear the results...remember be patient. It takes a looooooong time and your son has been sicker for longer than mine.

I know it's going to sound archaic, but we don't have a dishwasher! We live in an older home, have had a kitchen reno on the schedule for the last several years, but with the economy, etc., have been reluctant to move forward now. So, I've heard you can microwave most brushes? Anybody else heard about this? Also, we use one of those Oral B electric brushes which has been great from the dentists' perspective, but the replacement brush heads are very expensive! I'd love to have a clear idea of how best to keep them as clean as possible!

We, too, had lots of trouble getting our DS12 to sleep at a decent hour, and then he would wake up repeatedly throughout the night (it appeared, to do rituals), and then be exhausted still in the morning. Like Dad said, the abx seems to have helped tremendously with that! Now, on school days, it's lights out by 9:30, and he's normally snoring before 10, and we wake him up at 6:45 for school. He still tends to get up once during the night to go pee, but he doesn't seem to have trouble falling asleep again anymore as he did before the abx. And on weekends, when he can turn in a little later (between 10:30 and 11), he doesn't tend to get up during the night at all . . . sleeps right through until 8:30 or 9 in the morning! We do, however, give him Melatonin every night: a 2 mg capsule. I've started taking it myself, and I do think it helps without being the hammer other sleep aids can be. Several times in the past, too, folks have recommended Valerian Root for a sleep aid; apparently, Melatonin can help one fall asleep, but Valerian Root helps them stay asleep? I purchased some but have found we haven't needed it . . . yet. Might be worth a try in your case, though.

The whole SSRI thing is curious to me. Our family history has some anxiety issues . . . OCD, general anxiety, social anxiety, etc. . . . and when my husband was first prescribed an SSRI himself many years ago (in advance of our son having been prescribed), it was Celexa. We were wary of even an adult taking a psych med, so we got several doctors' opinions about the efficacy, the side effects, how it would/should work, etc. We were told by more than one doctor that, if it should turn out that a lack of active serotonin in his brain was NOT, perchance, the issue for my husband, then the SSRI would essentially not do anything for him. That it would be like someone taking a Tylenol without having any aches, pains or fever. Well, it did appear to be a legitimate chemical issue for him because he definitely felt calmer and less anxious, fewer instances of OCD, while taking it. Over time, when his job circumstances changed for the better, etc., he decided he was ready to try Life Without Chemistry. Weaning off the Celexa, however, turned out to be a nightmare for him . . . literally. Which his doctors had not warned him about; in fact, they had indicated that there were few if any issues weaning off Celexa as compared to, say, Paxil. He had nightmares night after night, moments when he would wake up gasping. He was a crab. When the doctor first prescribed the Lexapro . . . a different formulation of the same components in Celexa . . . for our son's OCD, we were very wary. Did not want to go there, even though at that point, my husband had not yet gone through his Celexa weaning experience. We just didn't want to give a 7-year-old a psych med. But at that point PANDAS was not in the picture, and he was struggling horribly, especially in school. His quality of life stunk, so how could we not give the Lexapro a try? Truth is, it worked beautifully for quite a while. The OCD almost disappeared, and what remained he was able to cope with with only nominal therapy intervention. So our experience with that particular SSRI was excellent. On the other hand, Prozac was the opposite; at lower doses, it didn't seem to help him at all. At a higher dose, he experienced akathesia -- twitching, ticcing, "spazing out," -- all behaviors we'd never, ever seen in him previous to the Prozac. The Luvox, as I mentioned before, seems to be as subtle as the Lexapro was initially, if not even more so. Again, because we've discovered PANDAS and our son has definitely responded well to high dose abx (2,000 mg. Augmentin XR daily), I am uncertain whether or not the Luvox brings anything to the table. But he hasn't had any of the negative responses to it that he had with Prozac so, for the time being, we're leaving things status quo. So, response to these meds really does seem to be a very individual thing, despite the fact that they're all supposed to do essentially the same thing: leave more serotonin available in the brain for the receptors to pick up on a consistent basis. I read somewhere that carbohydrates tend to increase serotonin production, which led me to the half-joke assumption that carb loaders may have more serotonin coursing through their brains, plus carb loaders can tend to pack on extra pounds (i should know!), so maybe that's why "fat" is frequently associated with one having a "jolly" disposition?! I'm not quite jolly at this point, but a few more chips, and I'll definitely be approaching "cheerful."

We were treating OCD before we knew about PANDAS. Our son took 20 mg. to 40 mg. of Lexapro daily, and he was predominantly OCD free for nearly 4 years. When he was exposed to strep last spring and "fell off the deep end" with his OCD behaviors, that's when we circled around to PANDAS. The Lexapro didn't even touch the raging OCD behaviors at that point, so the doctors switched him first to Prozac, which also didn't help, and then eventually to Luvox. About 1 month ago, we also added Intuniv, which is a non-stimulant ADHD-type drug intended to help him with attention. We've been doing CBT since he was 6 (he's now 12); this year, with the uncontrollable OCD behaviors kicking in harder than ever before, we moved to some intense ERP, and he has been very well supported by that while we give the abx time to really get hold. I can't say definitively if the Luvox has helped, but I can say it hasn't hurt. He's been on high-dose abx for 2 months now, and he's steadily improving. I think it's the abx, and the psychiatrist thinks its the Luvox. Go figure. We, too, have tried "hammer drugs" during the really horrible periods, like risperadol, Seroquel, Abilify, clonansepam and Zyprexa. Only the clonansepam seemed to have any real, positive impact on the anxiety without killer side effects (such as sonambulence, ravenous hunger, etc.).

I have some similar "skeptics" in my fold, and I put together small binders for each of them. Knowing their sensitivity (okay, let's call a spade a spade: "snobbery") about the quality of scholarly research, I searched the forum here and downloaded copies of the more technical, medical journal articles and research provided by the likes of Suzan, Buster, Vickie and others. The "mouse study paper" was front and center, followed by some of the other available info I found here. I haven't gotten any feedback from either of the doctors since I left that package in their hands (one is the pediatrician, the other is a psychiatrist), but I made a point of opening a few of the articles up myself for the psychiatrist while I was in his office with him because he is a self-admitted snobby skeptic! Actually, I asked my son to leave the psychiatrist's office for a few minutes ("go get a drink of water") while I arm-twisted the doctor to at least open his mind up a bit more about PANDAS in general. He is a tough nut to crack, however. When my son came back in the room, he grinned and asked, "So, did you guys work all that out?!" To which I replied that I was still working on it but it was okay anyway because Dr. B. only had my son's best interests at heart anyway, and so long as he didn't get in my way, I thought we could work around our differences. I added that, "Besides, Dr. B. knows that if he tries to fight me, I will just find another doctor for you!" Which I will, and you can, too! That's always an option, and they should be aware of that!

Thanks, Michael. Having read some of your previous posts, I know that you are really knowledgable and experienced in this area. I take it Nystatin is a prescription antifungal? Are there any "over the counter" types that we might try at home as a first "litmus test" to see if there's a response? Having had to pitch really hard regarding the PANDAS and needing long-term abx from our pediatrician, I can just see her face if/when I approach her about yet another "unprovable" issue I want to try and treat through prescription drugs! She's gonna call Child Protective Services on me! Aarrgghh!

Sorry, but what is "C-Diff"?

Thanks, Gat's mom. Can you tell me, are there any simple, standard tests that my son could be given to determine definitively is candida is an issue? Thus far, we're not working with a PANDAS or DAN specialist -- just his pediatrician of 10+ years -- and I'm not sure how familiar she would be with this issue. If we had something to suggest, however, I think she'd get on board. Though, I gotta admit, with all the meds and supplements he's already ingesting on a daily basis, I'm a little reluctant to throw yet another thing (antifungal) at him. Thus far, out of your list, we've seen some reflux and body temp issues; he's periodically "silly" all on his own, so that type of behavior has not been substantially different of late where I would necessarily see a tie-in. And he's never been a big sugar guy, though carbs are a fav, again, though, not necessarily more now than before the abx. In your experience (or anyone else's), can it regulate on its own, once this abx is cut back to a prophylactic dose or along with regular probiotics?

Our son has OCD. Now that I'm getting more educated about all the various behaviors, I also would say he has some subtle, though not especially obvious, vocal tics. The Intuniv has not, in our case anyway, escalated any behaviors/tics or added any. I think that is likely because it is non-stimulant.

Hi! I know we've talked about this previously, but I'm still not clear on what the symptoms might be of over-active yeast production in a pre-teen or teenage boy. Do any of you have experience, diagnosis and/or a list of symptoms you could share? I recall there were some behavioral aspects ("silliness") and some other potential signs, as well, but since PANDAS symptoms themselves can be such a mixed bag, I'm having difficulty separating the wheat from the chaff, as it were. Any help very much appreciated!

Our son has been complaining of "sweating at night" and being too hot in his bed at night lately, also. He's never had IVIG, though; just high-dose abx. Frankly, I thought it was more likely hormonal than associated with the PANDAS, but maybe it's all mixed up in the same bag? He had me drag out the fan we use in his room during the summer months and plug it in last night! Slept happily and didn't complain this morning for the first time in nearly a week!

Hi Trg Girl! We've had real struggles off and on with focus in our house, too, much as Faith has described. It is so wearing on everyone, not the least of whom is your daughter, who no doubt doesn't mean to drag things out to the extent that she does or lose her focus so easily. For what it is worth, what we've found is that during the waxing or exacerbation of his OCD behaviors, that's when his focus is the worst. There's a great article available on the OCD Foundation of Chicago web site called "What the Heck is Obsessive Slowness," and it pretty much speaks to all the things that pertain to lack of focus and the painfully slow progress we see in schoolwork and homework in our house. My son is now 12 and in 7th grade, and I can tell you we've been dealing with this every year. Again, when the OCD is under control, his focus seems to automatically improve, but when he's struggling more with the OCD, he's probably clinically diagnosable with ADHD, as well. If you download a copy of that article (go to the web site and look under the "Expert Perspectives" section), you could provide that to the teacher to give her some perspective, as well. And I absolutely echo what Faith has suggested about a 504 or IEP; our son had a 504 which grew in terms of its provisions from 3rd grade through 6th, and just this year the severity of his OCD behaviors in this latest exacerbation caused us to convert the 504 to an IEP. Overall, the accommodations assist his learning at his own pace, which is still well within his grade level and then some, but it takes the heat off him having to perform within some of the stricter time parameters set for things like testing, etc. As for medications, just about 3 months ago, our son began taking Intuniv, which is a non-stimulant ADHD medication in a similar vein as Straterra. I had mentioned it to our psych because I'd read that Sammy Maloney (of "Saving Sammy" fame) had been prescribed Straterra, and his mom, Beth, thinks that it assisted both his focus and his OCD. I will have to say that we all believe, including my son, that the Intuniv is helping him both in school and with homework. In the first few weeks, he tended to be a little sleepy and you do have to watch their blood pressure and make sure they eat regularly so that their blood sugar/energy doesn't take a dive, especially in the afternoon, but most of those side effects evened out within a few weeks, and now he's back to doing quite well in terms of focus in school, completion of his classwork within the alloted time, and even knocking out his homework with greater efficiency.

Well before we knew about any real issues, our son loved jumping off things . . . the stairs, the coffee table. It seemed to provide some relief or stimulus that nothing else could. I read a book back then about "highly sensitive" children in which the author, a psychiatrist, posited that these kids like "percussive" body movements because it serves as an outlet. When they "bang" or "bounce," they release some pent-up sensory stuff, and that is pleasing and calming to them. We got a backyard trampoline when our son turned 7 . . . my thought was we would spare his bed and the ceiling over his bed from the constant bouncing there! It became a godsend in a lot of ways. Jumping helped him release and chill, and just having the trampoline in the backyard opened him up to some social opportunities because we became the neighborhood house "with the trampoline in the back yard!" Kid magnet! We've since gotten one of those small, indoor, jogging trampolines for our harsh winters. (I admit it, I use it too! ) I think you're on to something there!