MomWithOCDSon

Once again, I will echo Meg's Mom here and encourage you to follow your mom's instinct and get your daughter help as quickly as possible, even if it flies in the face of what your DH prefers; in the end, he will thank you. Whether or not its because we physically carry them in our bodies for nine months, feeding and caring for them before anyone else is in a position to do so, it seems also indisputable that, 9 times out of 10, a mom's instincts about her child's needs are dead on. Dads are awesome, and some seem to be able to develop nearly identical instinctual powers, but that's rare. We're one of the families who didn't get immediate help, both because our local practitioners (pediatrician and therapist) at the time shut us down about PANDAS, and because we hadn't found an infectious link yet, either. So, having "treated" our DS's OCD only mentally and not physically for nearly 7 years before arriving at PANDAS and antibiotics, I'm pretty sure he will never again be 100% OCD-free. Yes, we had some short and even some long, extended periods of sub-clinical OCD before trying antibiotics, but each "rebirth" of OCD ultimately manifested as more virulent than the episode before, and the last one sent our DS spiraling out of all control, and finally drove us to seek PANDAS help, despite the naysayers. If I had it to do over again . . . . . . So, don't let this opportunity slip away just because your DH is reluctant. My DH was skeptical and reluctant, also, at first, but he's now DS's second biggest supporter, next to yours truly! It just takes some folks a little longer to "wake up."

I Googled it. It's a fish in the mackerel family. So if your vegetarianism includes no fish, then I guess this particular brand is out for you. No pretty boys, though!

We keep the smoothie pretty smooth . . . more "smoothie" than fruit, except for the banana, when either DS or one of us has a sore throat; as long as the citrus is contained, it hasn't been an issue; the yogurt really takes the acidic sting out of most of the berries. Yeah, I would definitely stay away from citrus: lemonade, orange juice, etc. I'm sure miso varies, brand to brand, but the one we get is by Tsunami. It's called "natural Tofu Miso Soup, and here's the list of ingredients: soybean paste (soybean, rice, water, salt), water, salt, vegetable protein, bonito extract, yeast extract, seaweed extract, tofu, and green onion. There's no chicken stock, but it does say "Contains soy and fish." Not sure where the fish is in that unless it's in the "bonito extract" since I have no idea what "bonito" is! Feel better soon!

Are you dairy-free as well? If not, yogurt and/or frozen yogurt, or maybe Tofutti. Applesauce is a big go-to around here, especially chilled in the fridge before eating. We make smoothies with fresh fruits, yogurt and ice -- bananas, berries, etc. Miso soup! Yum! There're a couple of brands available at the Asian counter in the grocery that simply require you to add hot water, or even cold water plus the microwave, and they're actually quite good!

So sorry, Peg. This stinks, but hopefully the increase in abx and your other additions (ibuprofen, valium) will keep it in relative check. Yeah, Stephanie, I, too, think of January as Strep Month. It's maddening!

Don't know if your DD is as style conscious as she is touch sensitive, but I find my picky dresser DS is quite happy with the Hanes label-free white t-shirts I can get at Target. They're very soft, no tags to annoy the back of the neck, and they come in packs of 3 or 5 so you always have another one on hand that's indistinguishable from another. So, if you DD wouldn't be upset by the concept of a "boy's" t-shirt, its a pretty easy and economical way to go!

Thanks for that clarification P.Mom and WD. I was wondering if those statements about cooperation and cross-disciplinary communication were Leckman's adds; I can hear him actually saying them, as a matter of fact. It sucks, though, that, on the surface, this paper will be read and interpreted by many as both new and negative. It has a November 2010 date stuck on it, for heaven's sake, even though it's old, old, old (and flawed)! Why go to the trouble to have this re-issued?!?!?! And, if that's the case, then why isn't it clearly identified as a Meta-Study or annotated re-issue or something along those lines?

Our DS definitely loses it MORE at home than he does at school. His desire to be liked and thought well of by both of his peers and his teachers helps him keep his anxiety and outsized OCD reactions in check, for the most part these days. He occasionally becomes overwhelmed by something unexpected, but is able to regain his composure reasonably quickly. But after having sucked it up all day, home -- the "safe place" -- can become his padded room. Especially on Friday afternoons. You'd think that there'd just be this great rush of relief come Friday afternoon . . . school's out, weekend's ahead, even with homework to do, it doesn't have to get done right now, etc. But Fridays have traditionally been his roughest day; it's like he's just fried from putting on a cheerful, functional face all week! It's getting incrementally better as time goes on, and it helps that his dad and I now know that those Fridays are tough for him, and we just try to steer things to very neutral territory while he decompresses from his week. By the time this whole PANDAS thing is "over," we'll have doctorates in "Pins and Needles Sitting" and "Broken Glass Walking."

It really seems to depend on the kid. What does seem to be a thru-line to some extent, however, is that many PANDAS kids respond best to very low doses of psych meds (especially SSRI's) as compared to a non-PANDAS population; Dr. Murphy has written a paper about SSRI's and PANDAS kids in this regard. In terms of the "calming" psych meds like risperadal and Seroquel, our experience is that yes, they can encourage quiet and sleep. So if your child and your family have become really strung out after night after night without adequate rest, then one of those is probably worth a try, presuming the other options like Valerian and/or Melatonin fail you. The first time our DS took risperadal, he laid down after breakfast and slept for the rest of the day. In fact, it was the sonambulence caused by both of these drugs that caused us to decide not to use them anymore; we weren't quite at that "strung out" point yet, and we hated that heavy-handed, drugged response he displayed when taking either of them. But again, if your kid needs rest, I can definitely attest that they can work very well for that purpose!

Lisa -- Sorry for what you're going through; does it help to hear another "Been there, done that, but it WILL get better"? The only suggestion I can add to everything already noted here is, have you tried Valerian Root? You can find it at the local drug store and it definitely took the edge off the our DS's anxiety and helped him to relax. So, we would dose both the Valerian Root and the Melatonin about a 1/2-hour before bedtime; the Valerian relaxed him so that he could fall asleep initially, and then the Melatonin helped him to stay asleep. Also, you've said you've tried Melatonin and it didn't work; have you tried stepping the dosage up a little bit and see what might happen? We started at 1 mg. and have tried as much as 3 mg. (our DS is nearly 14, 140 lbs., but I'm not convinced age or weight is much of a factor here . . . maybe metabolism is really the determining factor?). We've settled on a 2 mg. dose as it seems to foster a full night's sleep without causing any lingering drowsiness the next morning. Hang in there!

Bless you for being so concerned and resourceful! Our 14yo, 8th grade son has similar problems with writing when his PANDAS is active. He participates in his school's gifted language arts cirriculum, but in the height of PANDAS, he has trouble sorting and prioritizing his thoughts for papers, and his small motor skills deterioriate so that the physical act of writing itself becomes incredibly tedious, time-consuming and painful. And even after all of that, the resulting penmanship is so bad, the teacher probably couldn't even read it, anyway. Also complicating some PANDAS kids thought processes are OCD obsessive thoughts that exaggerate perfectionism, clarity, prioritization, etc. And all of these problems combined make time a real problem, since it can take 4 or 5 times longer for a kid like this to write the same amount of information as a kid without the disorder, and that sense of time getting away from them can, in turn, ramp up the anxiety even further, causing more problems getting the writing accomplished. It can become a viscious circle. Here are some things our son and his teachers have found can help: - He is allowed to keyboard his papers, either at the in-classroom computer, in the learning/computer center, or even at home, rather than handwrite - He is allowed extra time, and if the paper is a "big" one with several sets of requirements or expectations, his teacher breaks it into smaller, less intimidating "bites" for him so that he can take it one step at a time - At the height of his anxiety, if he simply cannot adequately sort his thoughts and get them down on paper himself, he is permitted to dictate them, either to the teacher or to his parents, and we take the dictation down for him, word for word. Sometimes, once having gotten "the bones" down on his behalf, he is then able to review what he's come up with and make his own edits without too much trouble. We have even used voice-recognition software on our home computer for him at times, though it is not especially reliable. Many of these kids, like our son, are very bright and exceedingly gifted verbally (as you've probably noticed with your student), so permitting dictation when necessary has really helped. It also fosters success during the toughest periods of the illness so that, when he's feeling better and more under control, he has greater confidence that he can finally get back to writing himself because he knows his thoughts and ideas can be good ones. Thank you again! You must be a terrific teacher!

LOVE an "inside scoop!" Makes me feel so in-the-know, which is a rare thing these days! Thanks for taking the time to post!

I think our experience has been like many here, and I agree with everyone here about trusting your gut, with the added caveat, sort of highlighted by LLM, that if you make the decision to withdraw your child from school for a period of time, you do it because it is what is best for her and your family, knowing all the while that what is best may not be what is smoothest. When anxiety and/or OCD are in the mix, it can muddy the waters because you can wind up inadvertently feeding your child's fears; the school is probably concerned that she will become school-phobic, if she isn't already. On the flip side, if your child is more dysfunctional than functional in the school setting at present, it might be more beneficial to consider either a) making additional changes to the school set-up, home-school her until she's physically, mentally and emotionally healthier and better able to manage her anxiety in the school setting, and/or c) home-school her until the school implements the necessary changes for better addressing her needs at school. Here's what we wound up doing. We pulled our DS out of 7th grade for about 6 weeks. Frankly, in our case, we pulled him out less because we felt he couldn't handle it if properly managed by the school and the staff, and more because it was obvious that the correct pieces were not in place at the school early in the school year, when his exacerbation first really set in. Like your DD, he was too anxious to stay in class much of the time; if he missed a single word of instruction, or was a bit late getting to class because he had to stop in the washroom or dithered at his locker too long worrying about whether or not he had all the supplies he needed for his next class, he'd wig out and be completely overwhelmed. The school wanted him to stay in school so as to avoid giving him the message that the adults felt him incapable of coming to school, but they didn't have the right systems of safety nets provided for him at that point. So, we brought him home and home-schooled him, put him on antibiotics, entered into a more intensive ERP therapy program, and started meeting with the school to set up a functional return plan for him. We got feedback and ideas for managing the anxiety in the school setting via the ERP therapist, and we spent a lot of time with the staff and teachers discerning what accommodations were truly "doable" as opposed to desirable in that setting. By the end of the 6 weeks, DS was feeling better (thanks to abx and ERP), and we began getting him back in school, one class period at a time. We started with his favorite class, right after lunch, and every couple of weeks, we would add another class to his schedule. So first we got him through the second half of the school day, and then we started adding classes in the other direction, on the other side of his lunch period, until, after about 2 months, he'd worked up to being back in school the whole day again. It wasn't always smooth, and some days were still very stressful for all concerned. But, for us, it was the best choice. The social activity and maturation afforded him in the school setting far outstripped what we could provide for him at home and, to be perfectly honest, he's academically advanced to the point where we were going to have trouble adequately challenging him. Once back in school, he had not just his family and a couple of good friends to support him, but added a chatty lunch period, a social worker, a case worker, and a handful of very helpful and supportive teachers to his team.

I wish! I have to give DH credit for that particular set of genes! I'm practical and analytical, but I'm generally not bound by what's "proven, scientifically studied or documented" like my boys tend to be. My dad is a 40-year "terminal" cancer survivor, and my entire childhood revolved around yoga and meditation, the power of positive thinking, and all ilks of energy work and healing arts. He credits much of it with saving his life, and who am I to argue? So, as you've suggested, I feel like there's room in this world for all sorts of avenues toward healing, and maybe many (or most) of them work best in combinations. Maybe sometimes unexpected combinations! Open mind, open heart!

We had a great deal of success at a very young age with professional chiropractic, and, up until puberty at least, I used both massage and chiropractic techniques to soothe my DS and try to fight allergies, colds and ear infections. Especially with the chiropractic, the results were palpable; if I got him to the doctor for an adjustment at the first sign of a cold or congestion, we could head it off pretty well without any major descent into illness (ear infection, etc.). Now that he's older, though, he's not comfortable with touch, either; puberty has set in! We tried a no-touch/light-touch technique recently which, I'll have to admit, I think was not legitimate. I don't want to call it out by name (it wasn't reiki), but the whole experience rang as very insincere. I think a lot of the benefits of the "energy arts" is to be found in the patient allowing, participating and even "buying into" the potential for benefits, so you might try discussing it with your DD, or suggest one session as a trial and see how she responds to it. I grew up with reiki, meditation, yoga, and a whole host of fairly "new age" lifestyle practices, and I've seen them provide benefits to many. I just think there's an element of faith and "belief in" that needs to accompany the experience in order to enjoy those benefits. For my scientifically-minded, skeptical DS, it just wasn't going to fit the bill, at least not at this point. Good luck! It's certainly worth a try!

Hi Lisa -- Please check the pinned threads at the top of this forum; there is a ton of information there for you . . . much more than we can repeat here. In short, given the identified strep connection (how cool that the hospital actually went there for your DD!), PANDAS does seem like a very real possibility. As you read through some other threads here, I think you'll find that PANDAS can manifest not only as tics, but also as raging, so it's possible that even your DD's ODD is actually born of PANDAS, rather than an inherent part of her wiring. If she started to improve on the Amoxicillin and then began to digress again, it seems likely that the Amoxicillin isn't powerful enough to address the infection adequately. You'll find that most PANDAS families have greater success with treatment doses of either Augmentin or Azithromycin; you might ask your doctor about either of those. Inability to sleep soundly or fall asleep is also something of a "classic" PANDAS symptom; many of us help our kids with over the counter supplements such as Valerian Root and/or melatonin. Both are easy to purchase at your local drug store and seem to have no negative side effects. Once your DD is taking the appropriate antibiotic, her sleep will probably improve, but you might try adding one or both of those supplements in the meantime. Valerian root, we find, can help your child feel restful and fall asleep, and the melatonin will help sustain the sleep. And, finally, I would suggest that you pick up a copy of "Saving Sammy" by Beth Alison Maloney. Other than the individual stories you can find here, it's the most complete disclosure of what PANDAS can look like I've found, and it also covers how, initially, Sammy's doctors put him on penicillin and he seemed to improve, but then he fell back again. They eventually settled on Augmentin XR, which is a time-released formulation of Augmentin (Augmentin being a combination of amoxicillin and clavulanic acid). Many families have great success with Azithromycin, too, even though that's a different class of abx. But since Augmentin XR is time-released and Azith has an exceptionally long half-life, there's some theorizing that it's the duration of the abx in the system that facilitates the healing. Unfortunately, you're not going to get that benefit with amoxicillin since it's half-life is quite short. Good luck to you, and welcome!

Glad to hear it's going better these days! Not to hijack the thread, but I wonder if "trouble with time" isn't a bigger OCD/PANDAS culprit than many of us realized before. We've been through periods where Time has literally been Enemy No. 1. There's never enough of it, don't you know the clock is supposed to stand still when DS loses himself in OCD thoughts or compulsions, DS needs five times as much of it as a "regular" kid to get through certain tasks, but then again it passes way too slowly when he's being asked to await something . . . . on and on and on! We've tried digital timers, egg timers, "click, click, ding" timers, verbal reminders, incentives, consequences, you name it. DS more or less perpetually feels like he's at the mercy of Time, and he has next to no say in it! Thankfully, when he's feeling better, alot of that gets ameliorated. He moves faster, time doesn't get away from him as readily, he actually finds he occasionally has some Free Time, even on a school day, etc. Still, I've suggested to him more than once that, with that gigantic science/math mind of his, perhaps his next science project should be a time machine so he could finally, once and for all, control It!

I was on the International Obsessive Compulsive Foundation web site this morning, trying to confirm the dates of this summer's conference. While there, I poked around a bit to see what might be new on the portal, and I happened upon this drop-down menu for "OCD in Children and Teens." Take a look at the the fifth item/link down the list: "Download our PANDAS Fact Sheet" I don't know who we have to thank for this: Meg's Mom, Buster, Dr. Swedo, Dr. K., Dr. Cunningham, Beth Maloney? But whoever it is, what a boon! To get this out there to folks who might otherwise never even consider it/hear of it, and to have it "sanctioned" (hey, they put it on their letterhead!) by THE pentultimate organization for OCD!! Another step toward not only being heard, but being cared for, as well! IOCF - Childhood OCD

Yes, thanks P.Mom, Vickie, and the countless others who volunteered so many hours toward launching, supporting and driving this project to its successful conclusion! My DH, an avid "New Yorker" subscriber, recently read this article and passed it on to me about a similar warrior mom. Though there are definitely some differences (the disease she's been fighting is not, in any circles, considered a "controversial diagnosis"), I found her story inspiring and validating as we fight to get our kids not only the daily care, but the research and acknowledgement they deserve. She's never given up, and neither should we! I can only find access to an abstract, but perhaps some of you out there are subscribers, or have a friend who subscribes and tends to hang on to copies for a few weeks. Here's a link to the abstract, if you're interested. Pat Furlong's Fight

Abx will kill off some, but not all, beneficial bacteria. Unfortunately, some of the most common -- acidolpholus, found in yogurt and kefir -- are killed by abx. But lactobillus (Culturelle brand name) and sach boulardis (Florastor is one brand) aren't killed off by abx so can be dosed simultaneously. Still, I'm sure it is probably most beneficial to dose them with some time apart for maximum life span of the bacteria. But if push comes to shove and dosing opportunities are sparse, choosing one of those two probiotics can help the crunch.

It is a puzzle! The bentonite, I find, is especially difficult to time. We do abx, vitamins, supplements and probiotics in the morning, at breakfast. Then he gets another round of supplements and probiotics at dinner, and, typically, another round of probiotics at bedtime. Initially, we were using the liquified bentonite clay, though we've never used it daily. This we were advised to give on an empty stomach, so we were doing it first thing in the morning, typically only about 30 minutes before breakfast and other meds. Didn't see any ill effects from dosing it that way. My understanding is that the clay basically bypasses the stomach and moves straight to the intestines/colon, so, unless you're dealing with sublingual supplements, it's going to get to the gut in advance of the other medications, no matter what, don't you think? I'm not sure an hour is adequate time, even. Lately, instead of the liquid, we've been using these clay capsules; the instructions on these advise that you take them at bedtime and allow the clay to work overnight. Again, we're not seeing any ill effects in terms of DS missing out on any of the benefits of other drugs and supplements this way though, once again, it's not something we do daily -- only every 3 or 4 days or so.

Thanks so much for sharing your digital copy! Very much appreciated!

Vickie -- Ever since I came to this forum . . . more than a year ago now . . . you have been a bastion of information, support and common sense for me and countless other members. I am so appreciative of how selfless you've been with your time and energy, not only here but also when it came to the Pepsi Project and probably a half-dozen other endeavors you're up to your eyeballs in but I know nothing about! I'm so sorry you've been suffering PTSD, but very happy that the cloud seems to be lifting and you're even experiencing that "maternal amnesia" that helps us forget the tough times enough so that we'll brave jumping into the fray again (why else would any of us go through childbirth over and over and over again?!?! ). Honestly, I can't imagine having been in your shoes. I, and seemingly some other parents here, was given the dubious gift of having my child's illness creep in over time, rather than slam me between the eyeballs overnight. At least I could sort of see it coming, even though I had no idea how bad it could really become until it hit its zenith last fall. But I did have the advantage of having some "breaking in" time, some early therapy and research in terms of some of the behaviors that PANDAS brings to the table, etc., rather than waking up one morning with a raging, sick child having put a calm, healthy one to bed the night before. Your PANDAS experience seems like a war in which you're enlisted without having known it. Somebody drops a bomb on your house one night, and there's no turning back. And when that bomb hits, and for the period after the primary destruction, it's a horrible mess. There's no rest, no solace, no normalcy. That would give anybody a case of PTSD. Cheers to you for sharing yourself with all of us so selflessly, and for coming out into the light at the end of the tunnel! And many thanks, once again.

We used risperdal briefly before we began treating PANDAS, and yes, it kicked in immediately for our DS, also. Ultimately, we did not like the sonambulence he exhibited when taking it, so we discontinued after just a few days. But if the raging is relentless, I could see using it for a respite for all involved. Now the tenex, I am under the impression that it does take a couple of weeks for THAT to kick in. For a while, our DS was taking Intuniv, which is basically Tenex, and though we saw some small impacts within a couple of days, it definitely took a while to really seem to impact him consistently.

We had our first MAJOR exacerbation at 12. I'm almost positive puberty and the kicking in of hormones is what proved to be the "last straw" with our DS; after all, hormones tend to cause inflammation. That being said, I would guess that PANDAS actually begins considerably younger . . . we just didn't know what it was or what the relationship was between infection and our DS's sensitivities, OCD, separation anxiety and emotional lability. We knew he had several of those characteristics at a MUCH younger age, but being asymptomatic and essentially "hyper-immune" to most common childhood illnesses (and to think I was patting myself on the back for a while -- "My kid is NEVER sick! Must be all that dedicated breast-feeding I did when he was an infant!" ), it took us until years later to sort it all out!