MomWithOCDSon

Count me in, also! Would love to hear when you were diagnosed, what interventions (meds, IVIG, abx, supplements) you used, whether or not you still take any of these, and whether or not you ever experience any sort of regression due to illness, stress, etc. Thanks so much for offering to share! And thrilled to hear you're doing so well now!

Holy doodle?!

Before we found a PANDAS diagnosis and treatment, and on the advice of our psych at the time, we entered our then 12yo DS in a similar "partial inpatient" program. I can't say that I would recommend it, and it's certainly not something we would comply with again now, knowing what we know. Here's what we found with the program we entered (things which turned out to be counter to what was "advertised" when we met with the intake people about whether or not this program would be good for DS. At age 12, this is a very tough age (PANDAS or non-PANDAS) for these programs as, in general, the "pediatric" programs are too "babyish" and infantile in their approaches to therapy for our tweens, but the "adolescent" programs tend to be populated predominantly by older kids (13-17) who have both "older" behaviors and "older" problems. Our DS was the youngest in the program he attended, and his co-attendees were kids with substance abuse problems, self-harming behaviors, suicidal and/or homicidal. They used profanity freely and frequently, among other things, that were not especially beneficial to DS. The program told us they knew OCD and anxiety and were prepared to work with him in both group and private therapy on these specific issues; however, he was the ONLY kid in the program at the time with these particular issues, and because the other kids' issues were so much "noisier" and aggressive, it seemed DS just more or less got ignored unless he rose to some bait and caused some trouble. They did "notify" us that they were "adjusting" his meds, but it was usually after the fact, rather than before. And they adjusted them every few days, as well, so how they could've discerned true impacts is beyond me, since most of them take a while to become effective. He was supposed to get private therapy sessions along with group sessions, but from what we can tell, in a full week of attending the program, he only got one, 30-minute private session with a licensed psychiatrist. Considering the fees the program was charging, and the trouble DS was experiencing at the time, we felt robbed on that score, as well. DS wound up sort of "absorbing" a host of new anxieties and worries from his exposure to these other, mal-adjusted/ill kids. He'd never before (or since, for that matter) mentioned any suicidal tendencies, but there was such a focus on "Do you feel like harming yourself?" in the group therapy sessions that he began to worry that maybe he did, in fact, want to harm himself. That was very alarming for us. But all of his talk about anything of that ilk quickly faded once we pulled him out of that program. In the end, the only positive impact of this program -- selfishly -- was that it gave us a relatively safe place for DS to be for 8 hours each day, for the one week that we agreed to try that program, so that DH and I got a "breather" for the first time in months. But I don't think the price DS paid was worth it. The meds they gave him did not help (and in some ways actually "harmed"), and the ideas and worries he took on from trying to participate in the group therapy just added to his stressors and triggers. If you have any other options, I would explore them first. Or at least make sure you get all the detail on the program in advance that you possibly can, and then if you enroll him, talk with him daily about what goes on there, how it makes him feel, etc. Partial inpatient/outpatient, in my experience, is entirely voluntary, so you should be able to withdraw him at any time if you determine that to be best for him. We did! All the best!

"What would 'activated' look like?" In our experience with our DS, "activated" is generally more of the behaviors and emotional lability that you're trying to quell, rather than a reduced level of it. Some kids get generally hyper; our DS got more high-strung, more "friable," if that word makes any sense to you. Meaning more emotionally fragile, easier to set off, etc.

In our experience, even if you successfully rid the body of infection, the immune system isn't always so quick to "bounce back," especially if it has been tipped to imbalance for some time . . . maybe quite a while before you even knew it. Not to mention, all sorts of other "common" issues can, unfortunately, continue to trigger an immune response that can aid and abet the existing imbalance, such as viruses, seasonal allergies, etc. Also, like dcmom says, OCD can "stick," especially if it's gone on for some time. But as the parent of a boy who was dxed with "regular OCD" at 6, dxed with PANDAS at 12, and doing quite well now at 16, I personally don't believe in "regular OCD" anymore, even in the instances in which you're left with some "sticky" obsessions/compulsions. If you hit this with everything at your disposal in a compassionate but relentless way -- medicine, immunomodulatory therapies and supplements, and ERP -- you can arrive at "subclinical," if not completely eradicate it. Don't give up!

That's great news! Good for all of you!

I'll second Eileen's advice - you need to talk directly to the music teacher. I think, rather than just showing up at the school and asking for her, I'd place a phone call directly to her so that (even if she may deserve it to some extent) she won't feel all-out ambushed. You're aware she has responsibilities and probably 10s of music students, so you're respectful of her time. But you need to speak with her ASAP and are willing to do it either over the phone or in person, more or less at her earliest availability. We've had similar issues in the past, and we sort of expected (or hoped) that our "go-to" people in the school . . . the ones that "got" DS and were very supportive of him . . . would intervene with the problematic teacher on his behalf and help straighten things out. Truth is, though, schools . . . even the best ones . . . are every bit as political an animal as most other workplaces, and most teachers and even many administrators seem reluctant to get in the mix and say anything to another teacher (especially if they're not friendly and collaborative on a daily basis) that could be construed as "telling them how to do their job." In the end, hopefully this teacher, once put in the loop, will at least abide your DS rather than ride him, even if she secretly continues to harbor the incorrect belief that he's choosing his behavior rather than suffering from anxiety. Unfortunately, despite all the fabulous teachers and administrators we've had over the years, there's also that handful of self-absorbed, inflexible, unenlightened and completely disinterested in changing that status quo school personnel who just don't "get it" and have no interest in ever "getting it." Thus began our DS's life education in strategies for "surviving" difficult and/or unkind people. It stinks to have to commence that education at a young age, but, in the end, it has helped him to hold fast to a healthy self-image and to understand that it is not always about "him." That there are people out there who are unreachable, and you just have to develop ways of coping and, frankly, getting around them, so that you have the best possible day, rather than letting these folks ruin your day or dictate to you in terms of defining yourself. *Sigh* We began DS's school years with the premise that all teachers are good, all teachers are authority, all teachers have your best interest in mind. By 4th grade, we'd been forced to modify that world view, and DS came to understand that his gym teacher at the time was inadequate, self-absorbed, ineffective, and incapable of empathy, not just for him, but for a number of his classmates. The blush was off the rose! But DS also knew that he had to continue to obey this teacher to the best of his ability while in his classroom/gym, and he had to continue to respond respectfully, as well. But this teacher's poor attitude and treatment did not define DS, was not even about him, and he did not need to take to heart anything this buffoon said to him or his friends that he knew intuitively was out of line and/or unkind. I'd like to say that this was the first and last experience of its kind that we've had during DS's 10 years of schooling thus far, but that would be untrue. The good news is, though, that this early, forced education in self-acceptance and self-image protection has served him well, and now the odd "bad" teacher doesn't make much of a dent in DS's day.

Sugar is also ideal food for yeast, so perhaps that plays a role, too?

Namenda is another one that has been helpful to some.

Cool! We tried them for a while ourselves, but we uncovered a complication . . . just want to put it out there in the event others have a similar situation. Many digestive enzyme products contain an enzyme -- cellulase -- which digests cellulose. However, cellulose is what is used with time-released meds such as Augmentin XR. So if you're using a time-released medication for your kid, you'll need an enzyme product that doesn't contain cellulase, or else you'll be undoing the benefit of the time release.

Welcome! Like you, our family proceeded under different diagnoses (OCD, GAD, etc.) for years before finding the immune system link. Don't know where we'd be if we hadn't finally found PANDAS and the support of this forum, especially. So much knowledge, experience and support aggregated in one place!

We only have one, so we don't run the risk of another child feeling short-changed by all the attention necessarily lavished on DS. Still, I can vouch for the importance of having other adults in the mix, for sure. "It takes a village!" There've been times when DS struggled with his self-esteem, and his answer to me or DH would be something along the lines of, "But you HAVE to think I'm smart! I'm your kid!" So it has been key that, along this journey, DS has found other grown-ups, usually teachers or a counselor, who encouraged him, saw his gifts through all the PANDAS garbage, and validated him in a way that his parents couldn't (mostly because he wouldn't let us). ION (In Other News) - I love TED! Thanks, LLM!

Hi! We've been using a number of individual supplements (D3, calcium, magnesium, zinc, B6, NAC, olive leaf, taurine, fish oil, milk thistle, quercitin, etc.) for the last 3 years, and I'd really like to get DS down to a multivitamin and maybe one or two individual supplements, if I can. I'm certain when he's on his own, whether away at college or fending for himself more here at home, he will never keep up. Plus, I'd like to cut down on the number of items I'm purchasing separately, anyway. I stood in the multivitamin aisle at The Vitamin Shoppe for about 45 minutes the other day, comparing all the MVs they had on their shelves. I finally settled on Source Naturals, Life Force Multiple, Energy Activator; it seemed to have the most complete blend of vitamins, minerals and some whole food elements, as well, including NAC, grape seed extract, quercitin and tumeric. I'm not convinced, however, that these items are provided in quantities that will fully support DS. DH and I have been taking them for the last couple of weeks, and I'm scheduled for some blood tests tomorrow, so I guess we'll find out if they're working well for us, at least. I'm thinking I'll cycle the MV into DS's regimen and, as some of the other supplements run out (usually one at a time), I'll leave them out of the mix and see how he responds. That's really all I know to do. Given as it is allergy season, however, I will probably continue with individual quercitin and NAC for the foreseeable future. What's your plan?

Has anything helped with his sleep? The problem is I'm awake all night battling it and I already take a pile of downers. Just wondering if some ssri's were better or if it just depends on the patient. Zoloft has not helped at all in a year of taking it, bad side effects from prozac and anaphranil, and luvox actually makes my heart race. Remeron stimulates me yet makes me tired............. It'd be nice to get some sore of medicinal relief so I could at least sleep. Not sleeping keeps the viscious cycle going. Thanks for all your responses, it's refreshing to finally find other folks dealing with the same stuff. I've found that my ocd gets much worse when I'm trying to rest or sleep, but since I have severe M.E./CFS, that's really all I can do is lie in bed, I'm THAT fatigued. I cannot exercise and small things like showers send me to bed because of severe post exertional malaise. Anyways, thanks. Some of what you tell me about your reaction to the SSRIs and other drugs, combined with the sleeplessness, makes me wonder if maybe the real problem with the SSRIs is that you're being given them in too high doses? My understanding is that SSRI doses have no relation to age or weight, and many of us here in the PANDAS/PANs community have found that our kids respond well to doses so low that your average psych doesn't believe it, and get activated by what the psych considers an "average" dose or even a "low" dose. There's actually a paper on this topic authored by Dr. Tanya Murphy and the team at USF; you can probably find it on-line or, if not, I can share a copy. Our DS takes melatonin 1 hour before lights out, and that seems to do the trick in terms of falling asleep, and then he generally stays asleep until the alarm the next morning.

Yes I've done the CBT and ERP but my ocd switches. So once we worked on "one" thing it just switches to another thing, and then I have to start all over with that. I feel completely helpless against it b/c the CBT doesn't work at all, I just battle the thoughts all day. We've been contending with OCD for nearly a decade now, and we've come to refer to it as The Great Shape-Shifter . Yes, as soon as you find a therapeutic response to one issue, it moves on to something else, always seeking a toehold to keep you under its control so that you don't "forget about it," like some sort of sadistic, spoiled brat! From the stories I've heard from other families, it's just in the nature of OCD to switch its focus; I actually heard a young boy on public radio one time talking about his OCD and describing it as a never-ending game of "Whack-A-Mole." But I do think that good . . . and I mean "good" . . . ERP techniques can help with all forms of OCD; it's just that you do have to keep adapting the exercises, the exposures, to address current issues. Like a lot of other families here, we've experienced lame ERP, "okay" ERP and good, effective ERP, and I think the really good ERP therapists are tough to find. Plus, you need the support of friends and family around you to sort of "hold your feet to the fire" . . . sort of like the tough love your support network can give you when you're trying to commit to a new diet or exercise regimen . . . and hold you accountable for practicing the ERP at home as well as in the therapist's office, even in the heat of the battle with the OCD. In my experience, when the person with OCD is also feeling quite ill, we tend to cut them more slack because of our level of sympathy and concern for their overall health and distress, but unfortunately that can backfire if the person indulges the OCD and continues with the behaviors because they're not feeling strong enough on their own to push back, and we as their loved ones are turning a blind eye out of kindness. Fighting OCD is one massive Jedi Mind Trick!

DS's reaction to lamictal represents another turning point (a positive one) in his health and functionality. Lamictal is an anti-seizure med that supposedly works by reducing the level of excess glutamate in the brain. While it hasn't actually reduced the OCD in DS, what it has done is made him less "married to" his OCD thoughts . . . less emotional about them and defensive of them. It's increased his ability to be more objective about some of the obsessive thoughts and compulsions that used to plague him, and thus to let go of them more easily. And it's helped him with this without zonking him out, making him listless or tired, or dulling his personality or his wit. It just seems to help his executive functioning to work more efficiently and consistently.

It's sounding like I'll have to try antibiotics again in the future, the c-diff was just so terrible. How long before your son saw improvement? I was on them for 8 months without any improvement. My DS was is a horrible place when we first tried abx; he had been curled up in the fetal position on the floor of his room, unable to do anything for himself, for over a month. Maybe because he was SO sick, and/or maybe because we had a major stroke of luck and found the right drug for him on our first try, within 48 hours (4 doses) of Augmentin XR, the change was palpable. He was far from "well" or even "functional," but he actually came out of his room and sat down at the dinner table with his dad and me for a meal for the first time in 3 months. It was just the beginning of his climb out of the abyss, and we have had a number of plateaus and even regressions over the 3.5 years since, but I hate to think where he would be today if not for the antibiotics. Regarding the c-diff, I'm sure that was horrendous and revisiting that isn't something you want to do. And you also say you've been taking probiotics. I wonder, though, if there aren't some strains of probiotics that might provide better protection against c-diff than others? And whether or not you might need to both refine the strain(s) you take and/or take higher doses, and perhaps that would be enough? When my DS was on antibiotics, we wound up giving him about 200 billion units of probiotics daily -- a mix of many strains -- and he was spared any c-diff or yeast issues. I know it doesn't work for everyone, and given our biology, I would think women might have more of a challenge than men in this regard. But perhaps it's something you could discuss with a knowledgeable doctor or naturopath.

Have you tried mineral oil? You can spread it on bread, under butter or peanut butter, and it has next to no taste but can be an effective laxative for younger kids. I don't know that talking with him is going to help . . . ever. While reasoning with a five-year-old may be possible occasionally ( ), reasoning with OCD is a non-starter. What might be more effective, however, is getting at the root of his withholding. As in, what is he afraid of? Afraid of contamination because poop is dirty? Doesn't want to let go of something that is part of himself (a sort of "hoarding" behavior)? If you can get him to identify and verbalize the underlying fear, then you (or a good therapist) should be able to design some exposure-response-prevention (ERP) exercises that will help him get past it. Is he receiving therapy for the OCD?

I don't know that the 50 mg. of inositol in his multivitamin is enough to make a difference, but you might see if you can find another supplement that has all the same ingredients except for the inositol, and see if his behavior improves at all. If he's high in serotonin naturally, then I suppose it's possible that the 50 mg. of inositol could be "activating" him, i.e., increasing anxious behaviors.

I'm so sorry you're going through this, and especially sorry that not all your family is especially supportive. This PANDAS/PANs stuff is a dichotomy. At its heart, it's really pretty simple: autoimmune and inflammation, resulting in all sorts of havoc. But when it comes to finding lasting, effective treatment, the nuances there and variances in response from person to person tend to exhaust and/or frustrate the "believers" and validate the "non-believers." Your sensitivity to medications and paradoxical responses to some of them is, in our experience, part and parcel of the PANDAS/PANs condition. Our first psych kept throwing various medications at our DS, and increasing dosages, and couldn't wrap his brain around why DS just got more crazed, rather than less. That was before we discovered PANDAS and found someone who would actually treat it. Then we began stripping away a lot of the "add-on" meds like klonopin, Seroquel, zyprexa, etc., adding antibiotics, and DS began to improve. In our experience, while a low-dose SSRI and glutamate modulating support (via lamictal) is very helpful, all the other stuff -- especially the anti-psychotics -- were just making things worse, rather than better. Also in our experience, the "magical thinking" or "thought OCD" can be the hardest to eradicate; it's just so tenacious and invasive. When you say you've been in therapy, is it ERP (exposure response prevention), rather than just talk therapy? If not, I would seek out an ERP therapist; ERP exercises and consistent homework practice should help alleviate some of this OCD. When it comes to your sleep problems, I wonder if you've tried anything like either melatonin or valerian root? I'm not sure how either of those would interract with your other medications, but perhaps it's something to bring up with your doctor, at least. We've found both of these helpful in quieting the mind and readying it for sleep, and then helping the sleep to be restful and restorative. I frequently come back to our first pediatrician's mantra: "A tired child is a wired child," i.e., sometimes when you're really exhausted, it makes it that much harder to sleep. So maybe between your racing mind and your medical challenges, you're just a little too "wired" to rest? That's where I think Valerian root and/or melatonin might be of some help. And finally, I'm wondering if you or your family members have read "Brain on Fire" by Susannah Calhanan. It is an autobiographical account of a young (25-ish, I think) woman who went from "top of her game" one day to a completely non-functional wreck the next due to autoimmune disease. She, too, was bedridden for some time, even after a doctor at NYU finally diagnosed her and began a treatment plan, and her long road to recovery almost sounds a little like a stroke victim's . . . relearning all sorts of things, regaining her short-term and long-term memory, language skills, etc. I think the book might be helpful (and hopeful) to you and your family . . . show them that there is some "shared experience" and that you are neither lazy nor crazy. Hang in there! You are NOT alone!

I don't so much see allergens "weakening" the immune system as contributing to its level of imbalance. I mean, an allergic response is an immunological response . . . it's an over-reaction, a heightening of the response. This time of year, we are big on quercitin, Pepcid and, at its height (allergy season, that is), adding Flonase, benedryl and/or zyrtec as necessary. My DS is allergic to most pollens (tree being the worst), mold and cats, and the extra histamine release in his body can stir up his OCD response. So we basically stop at nothing to diminish the histamine production!

Yes, it sounds as though it might be an OCD behavior. If he's high on serotonin, then you don't want to use inositol or an SSRI. But if he's high in glutamate and histamine, you could try some supplements to modulate those levels, which we've found to be helpful in curbing OCD and some of the anxiety behind OCD behaviors. N-acetylceistein (NAC) helps modulate glutamate, and quercitin is a natural antihistamine that prevents histamine production at the T-cell level. We also use a regular old, over-the-counter- H1 inhibitor (Pepcid), which has done truly wonderful things for our DS. And finally, not to sound like one of those people who thinks every case of Tourette's or OCD is actually mis-diagnosed PANDAS/PANS, but have you ruled out underlying infection and/or an autoimmune reaction to an underlying infection as a root cause behind your DS's condition(s)? I only ask because, if infection or autoimmune ARE at the root of his issues, then all the supplements and/or medicines may do is help manage things or reduce them. But if you can get to the root, you may be able to eliminate many, if not all, of the issues, over time. Good luck!

Screens have always been a part of our DS' life. DH and I do our work on computers, so they've always been around him, and he's developed some mad skills where they're concerned. He doesn't have a tablet of his own, but he borrows mine from time to time, and he has a desktop computer of his own along with a laptop (Netbook) issued by and intended for school. Our house rules are pretty simple and common. No screens for play until/unless school work is done. If he's out of sorts or struggling with some OCD, screens are among the mix for those privileges which may be restricted until he gains better control. And no screens at the dinner table, none a half hour before bedtime, and none after "lights out".

Sorry to say, no, haven't heard of her. Unfortunately, our experience with the major medical institutions in Chicago has not been a positive one (Children's Memorial, Rush, University of Chicago); there's a far-reaching "arm" in the pediatric immunological field here by the name of Dr. Stanford Shulman, a vociferous PANDAS nay-sayer. And he's trained a lot of the younger doctors in the field. Dr. K. is in the Chicago suburbs. If you do see Dr. Onel, I'd be really interested in hearing about your experience. I'd like to think the "tide is turning," slowly but surely, even here in the conservative Midwest. Good luck!

We've not seen her (yet), though we did go through the somewhat arduous intake process several months ago . . . lots of paperwork, medical histories, forms to fill out, etc. Ultimately, our decision not to follow through with an actual appointment had more to do with the practice's policies, as I recall them. Things such as you may not ever actually meet with Dr. Usman; you may instead be attended to by one of her associates or nurse practitioners. That no one in the practice will serve as your child's primary physician/pediatrician, so for standard medical needs, you still need to have someone else in your corner, etc. I will say that, from perusing the information available on her web site and the documentation sent to us to review and prepare for a first appointment, she very much seems to tend toward the bio-med and "natural," more diet and supplement oriented than prescriptions. Just my impression, though . . .