MomWithOCDSon

Yes, Kimballout! Yes! BronxMom2 -- I know how you feel. I've been there, too. And, in some respects, I'm still there. It's incredibly difficult to avoid feeling isolated, judged, pitied, and frustrated when it comes, especially, to the educational system and the schools, as well as some of the medical community. It all leads to us, I think, feeling very jaded and cautious when it comes to trusting that there's anybody else out there who can and will care for and about our kids one-tenth as much as we do! But I have to echo Kimballout's experiences. In a school meeting, all you really need is that ONE person across the table who, on any level, "gets it." That one other person who sees your child's potential and feels some personal responsibility and joy in helping achieve it. Thus far, we've been fortunate that our DS14, more so than we, has been able to make that connection. To find that one educator, case worker or advocate who sees the depth of his intellect, creativity, passion, generousity, humor and goes the extra step for him when we can't or we're not there to do it. More frustrating for me, even, than the schools is the medical system. Like you, despite living in a large, "progressive" metropolitan area, we have had a hard time finding pediatric medical care for our DS that is supportive of PANDAS treatment or "alternative" perspectives on immunology overall, let alone participatory in it. Our local problem, I think, is that the premier children's hospital group in the area has an infectious disease/immunology department headed up by one of the most vocal and obnoxious PANDAS nay-sayers, and the rest of the medical group is reluctant to run up against him when it comes to treatment and vaccination protocols. And then you have the notable "PANDAS docs" and other specialists such as DAN! doctors, etc., but they too frequently fall outside your insurance coverage, and/or they are unable or unwilling to be your child's ongoing, primary doctor, so you're still stuck with trying to find a pediatrician who will accept these other specialists input and keep the eye-rolling to a minimum. But I have to say, as time goes on, I get less and less concerned about how I'm received or perceived by anyone outside the immediate situation, and that goes for teachers, administrators, doctors, therapists, other parents, etc. I've come to adopt a "need to know" basis on nearly all fronts, so I only tell each of them what they need to know for the time and situation, and I keep the rest to myself. But when I have to -- when I'm confronted with someone who has a particular perspective that I feel is going to be detrimental to DS's progression or health -- my Momma Tiger claws come out, and I take on the unavoidable fight. Thankfully, I have this forum and a select few other trusted people to turn to when the going gets tough! Hang in there! As much as it may feel like it sometimes, you are NOT alone!

Burnell -- So sorry you're going through this; I know it is exhausting. And I'm sure you're apprising the Florida clinic team of these night-time issues? I would have to believe that they will have some valuable, experienced advice to share. Have you and the doctors looked into what the remeron is bringing to the table? I believe it is a mood stabilizer, yes? Is it possible the dosage on that needs adjustment? Perhaps that is activating your DD? Does it appear that the rituals are worse at night than during the day? Does she seem to be gaining ground in the intensive program during the day but moving backwards at night when she is away from the clinic and its team? I have seen our DS and other kids make strides when in the company of other caregivers, only to retreat to well-worn habits with their families at home. The Florida program, if it hasn't already, I believe will help address these "what to do at home" sorts of issues so that you can help your DD in these crisis moments away from the therapists. But if my understanding of the program isn't accurate, then I would certainly ask the team for help in this regard. During the worst of exacerbation, my DS14 also has trouble settling down for sleep. We've found that both valerian root and melatonin helps tremendously, but sometimes he needs some extra assistance. When that happens, I will do the following: he lies in his bed with the lights off, and I sit in a chair at bedside. We go through some very basic, calming visualizations to help him calm his mind. I ask him to envision himself in his favorite, calm, quiet place. I quietly help him with some details of his visualized environment . . . the feel of the sun on his skin, the color of the sky, the sound of the creek passing nearby, etc. Then I will ask him to make small physical movements, body part by body part, so that he can relax them: stretch your toes, let them go limp, stretch your legs, let them go limp, breathe deep and slow, feel the air come in and go out, etc. Many times, by the time I've worked my way from his toes up to this head, he's fallen asleep on me!

We had considered an Alphasmart for our DS (handwriting, especially during exacerbation, can be troublesome for him, as well). The school psychologist actually discouraged us from it because of the "stigma" attached to the device among the peer group, so we never wound up going there. Since your DS has identified learning differences, does he have a 504 Plan or an IEP at school? With one of those, you could arrange for him to have accommodations, even without an Alphasmart, that would lessen the burden of handwriting both in the classroom and for homework. He could, for instance, work on assignments in the computer lab or some other place where a keyboard is available, or he could bring them home and do them on your home computer. Or, since learning to write is one of the key goals of the early school years, you could request that he be allowed to bring some assignments home with him where he could work on them with less pressure and distraction, and with your personalized encouragement. My DS began with a 504 Plan in 3rd grade and now has an IEP in high school. Accommodations regarding handwriting that we've been able to secure over the years have included: 1) he's allowed to take some assessments verbally, rather than writing down his answers; 2) he's allowed to do more assignments on the computer, even when the rest of the class is handwriting them; 3) the teachers give him sets of classroom notes, either their own or a set from a reliable fellow student so DS doesn't have to worry about keeping up with note-taking in class.

I can't help but think that if anyone can help your DD with the OCD, it will be the team at USF. Their reputation is sparkling, and the experts from the Rothman Center that I've met are very wise, compassionate and experienced. Hang in there and try to trust in those folks a little. I just know they'll be able to help. Isn't part of the program a med eval, too? Assuming so, they will help you with her meds; sounds as though Celexa is not the best choice for her, or the dosage is not appropriate perhaps. As for sleep, if melatonin alone is not helping, have you tried valerian root? It might help to additionally relax your DD while the melatonin kicks in. Hang in there! We'll be thinking of you and wishing you and your DD success at the USF program.

I enjoy a little "Funny or Die" from time to time, and this item was particularly enjoyable. Sometimes we struggle so much with our kids; it's good to be reminded of how they can also make us smile and laugh from time to time. Hope some of you enjoy this as much as DH and I did! Funny or Die - Letters from Kids

I believe that even Swedo has mentioned sensory issues as part of the comorbidity syndrome with respect to PANDAS. My DS has definitely had sensory issues, pretty much from the age of 3 (when we think his PANDAS actually began, on the heels of multiple ear infections) onward. Like most of his other PANDAS symptom set (OCD, ADHD, processing issues), his sensory issues are much more intrusive in exacerbation and fade significantly when he is healthy. We had him evaluated by an OT before we knew about PANDAS, and he was identified as having some lower-level sensory issues, though I honestly can't remember exactly what the specific test results were. We tried some OT to address it, but he was not compliant . . . hated it, as a matter of fact. And once the OCD set it, we had to pick our battles and go to war against the biggest, most intrusive ogre, so the sensory stuff didn't take precedence. Like I said, outside of exacerbation, DS's sensory issues are significantly muted, but he is still a "picky" dresser. Thank goodness, most standard t-shirt and underwear brands now come "tagless," so that's one less battle. He tends to settle on one brand of socks that he likes (seamless, crew), and I just buy those in multiples whenever I can. Shoes can be really tricky, so my DS pretty much wears only one pair of shoes at a time, until he either outgrows them or they fall apart; he has some legitimately distinctive physical issues, such as an atypically high instep and wide toe box, so we find Merrill's, Ecco's or Keen's to be the most comfortable for him. Not inexpensive, but they do last well, and if he outgrows them before they're completely worn, I usually get a decent dollar for them at the used/resale shops. Pants, I think, are the trickiest part. My DS spent most of is 1st through 4th grade school years in a variety of sweat pants; at that size/age, I was able to find cargo styles, a variety of colors, and ankles without elastic in them, so he didn't look exceptionally geeky or odd. But still, with the "cool kids" in their Levis, he tended to stand out. By 5th grade, he cared about fitting in more, but he still couldn't make peace with stiff, hard, scratchy jeans or their typically stiff zipper flies. So here was my solution: I bought him denim, cargo scrubs. I was able to buy them in a "short" length, and the waists are a combination of drawstring and elastic, so he could accommodate his comfort that way. But once he put on an untucked t-shirt or even a polo, you really couldn't tell that his cargo jeans were any different from the other boys'. But they tend to be much softer weave, and all I had to do was remove the "Scrubs" sticker applique on the back seam with a seam ripper. They come in a variety of color washes, too, from dark indigo to stonewashed. We're finding other options and higher tolerances as he matures and gets healthier, but I don't regret "accommodating" some of the sensory stuff along the way. Unlike accommodation of the OCD, the sensory "kindnesses" we've granted him over the years don't seem to have "stuck," really; when he doesn't need them, he goes with the flow and it's no big deal.

Our DS has no yeast issues, but he has also been on a steady and moderately aggressive probiotic regimen since commencing antibiotics. I also think it's possible that males could be somewhat less susceptible biologically to troublesome yeast issues? Just based solely on my own "feminine experience."

Yes, LLM, yes! We were encouraged by one psych to go for neuropsych testing, also; in our case, it wasn't just ADHD but some suspected ASD symptoms ("processing difference") as well. But DS was in exacerbation, and we knew that, when his health and his primary behavioral symptom (OCD) were under control, both the ADHD and ASD-type behaviors faded significantly or disappeared altogether. This psych was new to us, though, and she'd not seen DS out of exacerbation, so she had no "norm" measure by which to compare. So, we proceeded with the preliminary "screening" for the testing; luckily, we were assigned to a very astute and honest psychologist who took a look at our records and our history, and interviewed our DS and us, and told us that he didn't see a need for any further evaluations at that time. Basically, according to him and via our own experience, the best applicability of neuropsych testing is for the purposes of advocacy with schools and other caregivers in order to secure the services or programs (such as a 504 Plan or an IEP) in the event the school is reluctant to concede your child's need for these without such additional testing and advocacy. If, however, as in LLM's case and in ours, the school and your other caregivers are on board already, testing for this sort of "secondary behavior set" might not be the best use of your resources. All the best to you!

Burnell -- I PMed you; you will be in very good hands in Florida! For your DD's lack of sleep, have you tried melatonin? It has worked like a charm for us for helping our DS feel restful and fall asleep. A potential bonus, also, is that it is apparently good at counteracting excess glutamate in the brain, which may be a contributor to OCD and some other behavioral issues in our PANDAS kids. So it may be helpful on more than one front. We give 1 mg. about 30 minutes before bedtime, and he's out like a light!

We've not experienced any fogginess or weight gain on Zoloft, though some other psych meds have made contributions in those regards (Zyprexa, Seroquel, Abilify). SSRI dosage is not usually weight-related, but for comparison's sake, my DS is 14, 145 lbs., and takes 75 mg. He began at 25 mg., and we left it there for a full 6 weeks to see how he would fare before increasing it. Then we increased it to 50 mg. and left it for another 6 weeks before increasing it again to the 75 mg. level. After another 6 weeks at 75 mg., we tried moving it up again to 100 mg., and within 3 days, DS was definitely "activated:" agitated, antsy, unfocused, etc. So we brought it back down to 75 mg., and he's remained there since. In our years with 2 psychs, several exacerbations and attempts to assist with SSRI's, I would recommend the following in general: 1) start with 1/2 the dose originally recommended by your doctor (unless your doctor happens to be Murphy or one of her staff) because few of them really get how minimal a dose may be appropriate for a PANDAS kid; 2) don't be persuaded to increase a dose too quickly, always give a certain dose a full 6 weeks to reach full efficacy before trying an increase; and 3) no matter what the dosage, if you see your child become increasingly anxious or "wired" in the 2 or 3 days following beginning the med or new dose, it's not a coincidence -- it's either the wrong med or the wrong dose for your kid.

Laure -- We are one of those families who uses abx, supplements, CBT/ERP AND low-dose psych meds to help our DS through the worst of the OCD. It has worked for us, but, as you know, there are as many experiences as there are kids! And, from our experience as well as the peer-reviewed paper by Dr. Tanya Murphy, I can tell you that if you decide to go the SSRI route, keeping the dosage very low is key. Sometimes, even "PANDAS psychs" don't fully grasp that, so we parents have to be very vigilent about it. Personally, unless your child is entirely nonfunctional, raging 24-7 or something along those lines, I wouldn't recommend Zyprexa; it is what most docs refer to as a "heavy hitter," and the side effects are not good (increased urinary frequency, dramatically increased appetite, weight gain, sonambulence, etc.). We used it, and I've read some other families have used it, for short periods in their darkest hours, many times just so their distressed kids can finally get some rest. As mentioned before, though, it's important to recognize that none of these drugs actually "treats" what underlies the OCD; they just treat the symptomatic behaviors. However, in our case, we've decided that having our DS be functional, happy, attend school, get through homework, enjoy his friends, eat regular meals, sleep well, laugh, excel academically, etc. is a fair trade-off for adding some low-dose Zoloft into his treatment regimen. The hope is that, as his immune system matures and he gets well-versed and more mature in using his ERP skills and tools, we can eliminate the Zoloft over time. All the best to you!

I will echo what LLM and DCMom have said: the techniques and tools are the same, and they are invaluable. My DS was diagnosed with "regular OCD" (is there really such a thing?) long before we knew about PANDAS so, depending upon the circumstances and the exacerbations, he's been in and out of CBT/ERP on an as-needed basis since he was 6 (he's now 14). The thing is, these are kids, and though the basic techniques are applicable across the ages, as they grow and develop and mature, the nature of the anxieties, compulsions and rituals can shift, also, so returning to therapy and the techniques at home can be necessary. My DS's Biggest Exacerbation began with crippling contamination OCD; now, two years later, his OCD is almost entirely of the scrupulosity variety (he wants to be the model citizen in every regard). OCD, whether it's created by a microbe or potentially by organic wiring, is a slippery sucker. And it can morph like an alien. I also wanted to address your concern about how difficult it's been for you to get your DD to the therapy session and how she seems "worse with every visit." Facing these fears/anxieties is SO tough, and our kids have much less experience with how to deal with fears of this magnitude than we do. So the natural instinct is to AVOID . . . AVOID, AVOID, AVOID. That's what she's doing by making it hard for you to get her to the sessions. And then, when she comes out of the sessions ramped up and in distress, it's because the therapist's job is to focus her on those very fears she's been trying to avoid, and chances are, in a 45- or 60-minute session, there just isn't enough time to take her thoroughly through the steps of 1) facing the fear and 2) facing it again and again until 3) she becomes less sensitive to it (or "habituated") to the point that she's no longer agitated by it. Depending upon how raw that nerve is, or how strong the fear, it might take days or even weeks of ERP exercises to get her to the point at which she no longer reacts excessively when confronted with it. So, long way of saying, sometimes it does seem as though it gets worse before it gets better. And that's when those of us who generally try to live non-confrontational, peaceful lives are tempted to skip the session or forego the ERP homework because it causes more distress . . . for the moment. We just have to hold onto the knowledge, however, that, in the long run, structured, controlled distress in small bites today will make it possible for our kids to live better, more fulfilling, less stressful lives in the future as they grow. Sorry for what you're going through. It can be really tough, I know. Hang in there!

We tend to mix it up a bit, since DS is on long-term abx. No sign of gut or yeast issues since we've been doing the following: Renew Life Ultimate Flora Critical Care (50 billion units per gelcap); great mix of flora (bifo, lacto, sach b., etc.) - 2x daily with meals Jarrow Sach Boulardii (5 billion per gelcap) - 1x daily at bedtime Culturelle - 1x daily at bedtime None of these contain s. therm, though, as I understand it, many cheeses do, and our DS is not dairy-free and adores cheese, though he eats less and less of it all the time. As for yogurt and kefir, the thing to be aware of is that the flora there is almost entirely acidolpholus, which abx will readily kill off. So not only do you need to space it out generously from abx dosage, but even then, you may lose some of the better impacts. Meanwhile, lactobillus, bifo and sach b. are more resilient to abx, and we've been dosing them simultaneously without trouble.

Vickie -- Can you also PM me the donation information? Thanks! We're in the Chicago area, and I would definitely be interested in attending. Be happy to share the ride with anyone else in the area, as well.

Yeah. Unfortunately, that article was full of typos. I don't know about the thinkpandas.com web presence; I just sort of assumed the quoted parent was someone who's active here and some might already recognize. Hopefully, they'll step forward!

Well, it's getting some press! I just got a Google alert on this moments ago! PANDAS at IOCDF

Thanks, everyone. And JG'sMom, especially, really valuable "inside" insight from you! Much appreciated! We like this dentist office and the orthodontist, especially; I don't think they intend to upset DS or say the wrong things. It just comes out of their mouths, like a script they've all learned many moons ago and repeat 7 or 8 times daily. I guess I need to write them a new script! Getting stuff put in his actual chart is a GREAT idea, though; I guess I just assumed they would make relevant notes there on this topic, but I'll step up and make sure that's the case. Thanks again!

Just wondering how you might deal with dentists, orthodontists, and other "professionals" who have peripheral roles in your PANDAS kids' lives? And I'm not really referring to the whole dental-strep-exacerbation thing. What I'm really hoping for some advice regarding is how to devulge the necessary information and solicit help in terms of the issues that might be applicable in their settings, without confusing the situation? We recently had DS's orthodontic consultation, along with a standard cleaning and check-up. I pulled each of the hygenist, dentist and orthodontist aside and attempted to explain things that might be important for them to know: that DS takes fish oil so his blood may be thinner and cause his gums to bleed more than typical; that he has an auto-immune condition so we have to manage inflammation aggressively; that he has OCD behaviors so telling him to brush XX times per day for XX minutes and similarly finite, quantified instructions only feed his compulsive side and he's better off if you just tell him to take care of himself and he's doing a good job thus far so just keep on trucking. But it's like I'm talking to a wall. They don't get it, and they don't even get it when he responds by pounding them with 100 questions for more detailed brushing or flossing instructions, or won't let them move on to the next patient because he wants to clarify things to the nth degree. I don't need them to buy into PANDAS or to help me treat it, but is it asking too much for them to not feed his anxieties directly? What do you do in those sorts of situation? Thanks in advance for your thoughts.

We give our DS an organic curcumin supplement we purchase from The Vitamin Shoppe.

Yes, it can be. Acute Otitis Media

Yes ! He had ear tubes at 3yrs old Ditto for our DS.

Great Vickie! Thanks!

Regarding NAC as a glutamate-modulating supplement: The attached paper (in the chart on Page 70) lists NAC fourth down in a list of "Candidate Glutamatergic Neuortransmission Modulating Agents for the Treatment of OCD." Further, it lists the following as NAC's Mechanism of Action: stimulation of the glial cystine/glutamate exchanger resulting in activation of mGluR2 receptors which dampens presynaptic glutamate release from neurons during bouts of excessive neuronal activity Glutamatergic Synaptic Dysfunction and Obsessive Compulsive Disorder Meanwhile, the following paper, which for me has been one of the best in terms of being explanatory and reasonably easy to understand, says the following regarding NAC and its glutamate-modulating ability: The amino acid N-acetylcysteine (NAC) is widely used for its antioxidant properties and as a treatment for acetaminophen toxicity; however, recent preclinical studies suggest that NAC also modulates CNS glutamate. NAC is converted to cystine, a substrate for the glutamate/cystine antiporter located on glial cells. The uptake of cystine by glia causes glial release of glutamate into the extrasynaptic space, where it appears to stimulate inhibitory metabotropic glutamate receptors on glutamatergic nerve terminals and thereby reduces the synaptic release of glutamate. Systemic administration of NAC has been shown to reverse the susceptibility to reinstitution of compulsive cocaine use in a rodent model by restoring re-establishing normal extracellular glutamate concentrations in the nucleus accumbens. In addition to attenuating synaptic glutamate release, NAC may enhance clearance of glutamate by glial cells at the synapse. Elevated levels of glutamate deplete glutathione within glial cells, impair cystine transport, and thereby increase the vulnerability of glia to oxidative stress. Preclinical studies demonstrate that NAC protects glial cells against glutamate toxicity, repletes levels of glutathione, and attenuates toxic levels of glutamate. Glutamatergic Dysfunction in OCD and Potential Clinical Utility of Glutamate-Modulating Agents So, what do you guys think that says about folks who have a good reaction to NAC versus those who have a poor one?

Pandas16, Emmalilly and MMC -- Thanks so much for your commentary . . . more regarding math than languages, I'll admit. Not to hijack, but you guys have collectively given me a true "lightbulb moment." My DS, especially during exacerbation, but to some degree outside it as well, moans that he's done the problems, but he doesn't know HOW he did them. It's almost as though it comes so naturally to him, that he does it automatically but then he gets distressed that, because he didn't have to actively "think through" each step to the solution, he either hasn't done it right (though 99% of the time, he has) or that he doesn't understand what he did and couldn't repeat his success if asked to do it again. It's the darnedest thing! What support for me to be able to tell him that there's more folks out there like him! Hopefully, it'll help him relax a little and actually ENJOY this gift he has! Thanks!

Pandas16 -- I'm confused. I haven't seen any literature that refers to xanax as a gaba agonist; it's a benzo, isn't it? In fact, the list of actual gaba agonists seems to be pretty slim and somewhat "elite;" not a lot of well-known names on it, at least not to me. Would very much appreciate any insight/clarification on this topic you could provide, links, etc. Thanks!