MomWithOCDSon

In terms of medical treatment in the Chicago area, Dr. K. is probably a good place to start. If you would like a referral to a PANDAS-savvy psychiatrist in the area, feel free to PM me and I will share some information.

Vegtbull -- Yes, "abx" stands for antibiotics. TPotter's son has/had PANDAs or PANs, an auto-immune illness that can result in Tourette-like and/or OCD-like symptoms and behaviors. Unfortunately, this Cognitive Behavior Therapy forum doesn't get a whole lot of activity, but if you'd like to read more about PANDAs/PANs and the abx, supplement, and immune-modulatory steps many of us have taken to help our kids, I would take a look at the PANDAs forum here. There's a world of information and ideas there: http://latitudes.org/forums/index.php?showforum=17 I haven't seen TPotter on the forum much these days, which is why I thought I'd step in and offer a couple of thoughts. The supplements some of us have found useful tend to vary from person to person, but in general, anti-inflammatory supplements (curcumin, turmeric, quercitin, Omega 3's, coconut oil) are favored. Take a look at the other forum, and good luck!

Thanks for posting! Like Nicklemama, I sort of "knew" this was going on behind the scenes. But to have it all laid out in front of you like that . . . wow! One take-away that was most startling for me: the fact that the Gardisil "control group" in the clinical trials were given not a true placebo (inert substance such as saline), but a dose of straight aluminum?!?!?! Unbelievable!!! What an unethical farce! Where's the lawsuit?!?!

Did anyone else happen to catch this interview on NPR's "Fresh Air" yesterday? I heard part of it on my way home last night and picked up the rest of it via the podcast today. http://www.npr.org/programs/fresh-air/2015/01/28/382157260/fresh-air-for-january-28-2015?showDate=2015-01-28 Very interesting! I want to get a copy of this book. And the title of the interview (and maybe the book too, for that matter) is a little misleading, as she talked about childrens' brains and adult brains, as well. Though I guess most of her recent research has been in the teenage brain. One thing that especially caught my ear is that the child and teenage brain responds very differently to various chemical inputs because of the plasticity of the brains . . . there's more "substrate" material, she said, so they absorb more of the substances they're given and hold onto them longer. Makes me wonder of the "half-lives" we all have kept an eye on from time to time is determined by way of adult brains rather than immature brains! She also mentioned cannabidiol as an "intriguing area of research" for various seizure disorders as it "reduces brain excitability." I know there are families here who are utilizing that for their kids and seeing some results.

We started these when our DS was still on antibiotics, so we were trying to do very high dose probiotics at the time . . . in excess of 200 billion units daily. I don't know that 50 billion is too much to introduce at once, but I don't think it would hurt to start on an every-other-day schedule and build from there, if it seems appropriate. One thing we did find was that there was a "tipping point" for our DS; up to about 200 billion per day seemed to be beneficial. But when we went heftier than that, DS experienced some bloating and gas. So we backed down again to just under the 200 mark. I'm guessing that the "tipping point" is fairly individualized, though. Since he's been off abx, he just takes the one capsule daily, and sometimes not even that. All the best!

We like Ultimate Flora Critical Care. http://www.naturalhealthyconcepts.com/ultimate-flora-critical-care-p-renew-life.html?kpid=ultimate-flora-critical-care&gclid=CjwKEAiAi52mBRDkq5bX0vq1-RQSJAAq_7IGkj3z1ljrILYqsRmRqkbT4nctuTiM0GduYzulCoxO2hoCpaHw_wcB Nice mix of various strains, all in one capsule, high culture unit count in a single dose, and readily available on-line or at stores such as Vitamin Shoppe or Whole Foods.

Hi! Just wondering if, given the comorbidities you've cited, if you've ever looked into PANDAs/PANs, or if you've noted any coincidences with "waxing" or "waning" of your son's behaviors with common illnesses (strep, etc.) or exposures to family members who are sick? Many of us with kids in the PANDAs/PANs group have noted dialated pupils, and in my son's case, this symptom was associated with "fight or flight" episodes. It also tended to correlate with high histamine periods associated with seasonal allergies, eczema, etc. Certain foods can also drive histaminergic reactions, particularly in kids who are sensitive, so that might be one place to begin in terms of dietary responses. Good luck!

My son is an undermethylator (very high histamine), and he does well with NAC; recent labs show his liver enzymes remain well within the normal range. He also takes a low-dose SSRI, however, and when we tried adding SAM-e for a brief period, it was a no-go. Don't know whether the low-dose SSRI was solely responsible for that or not, but because the SSRI has been helpful for him, we're reluctant to drop it in favor of SAM-e or another remedy. NAC is supposed to help regulate glutamate, so if it's working for your son with detriments, then it seems like a viable supplement. We also use antihistamines as needed (accompanied by probiotics so that we don't destroy the gut biome) and another glutamate modulator, Lamictal.

Sorry, as I am far from a methylation expert, and though we've considered 23 and Me, we've not gone down that road. I just wanted to suggest that you PM the member "LLM." She's quite advanced in understanding both the methylation cycle and 23 and Me, so I'm betting she'd have some good thoughts to share. The only other note I'll offer is that if you child's serotonin levels are, as you've indicated, in the normal range, SAM-e would probably need to be added cautiously, if at all. My understanding is that it works predominantly on serotonin levels, so you might wind up over-doing the serotonin as a result, and then you'd probably see some activation behaviors.

If you run a Google search, you'll come across some SPEC scan studies done out of Wayne State and Children's Hospital of Detroit (Dr. Rothenberger and Dr. Chunagi, as I recall) who found increased concentrations of glutamate in certain parts of the brain associated with kids with OCD. I think Dr. K. has done some work coordinated with Dr. Chunagi and SPEC scans of PANDAS/PANs kids, also, though I don't know if that work is ongoing. Dr. Swedo's scans found enlarged (inflamed) putamen and caudate nuclei in PANDAS patients prior to PEX, which shrunk down to normal size following PEX, so it seems like there may be some connection there between the two studies. Your comments about winter and the timing of your DS's current issues makes me wonder, though, if it might not be about either increased exposure to immune triggers given the colds, flu and closer quarters the winter months bring, or if there might not be some connection between his brain function and a lack of sunlight/Vitamin D? Have you tried anything like a Happy Light (full spectrum sunlight alternative) in his room, especially during the winter months? It may all be psychosymatic, of course, but we've had one for several years now and feel as though it helps.

Smarty -- Chest pain rings one of two bells in my experience with my own DS: 1) yes, heartburn or reflux, prompted in part by overeating dairy; or 2) panic response. I would suggest trying a dose of Pepcid and see if that relieves it? Too much histamine coursing around could be behind either one or both (reflux and panic), and Pepcid should help that temporarily. Then at least you'd know which direction to head in terms of a more long-lasting solution. Hang in there!

Sending warm, healing thoughts your way. And I'm here to say, no, this doesn't have to be your life forever! I know it can seem as though it is never going to end, but as your DS continues to mature . . . both physically, mentally and emotionally . . . the meltdowns will simmer, and his ability to more appropriately meet the mental/emotional assaults will improve. Not to mention, his immune system will mature, as well. Take at least an hour for yourself to have a glass of wine or coffee with your spouse or a good friend, or a bubble-bath or a yoga class, and then put your head down and soldier on, just as you've done for the last 12 years. You're a pro now, for good or bad, and you'll make it through. We're here for you!

As our DS is now 17 and (crossed fingers) more or less on the "other side" of major PANDAs issues, I can look back and remember a lot of similar moments in our house of the years. And because he seems to be left with some "residual" OCD, as well, we still have moments where we're trying to balance responses and interventions that rightfully suit an intelligent 17-year-old boy versus those that acknowledge he's not 100% OCD-free. I think the best I can offer in terms of chiming in is: - We're all human, so don't be too harsh with yourself when you answer your kid's selfish, bratty behavior with something along the lines of, "Well fine then. See what you get from ME for Christmas!" It's natural to get fed up, and our kids need to know/see that we're human, too . . . that our feelings can get hurt, that we can run out of patience, etc. - I do think that some limits and accountability being in place, even during exacerbations, is a good way to go. Even if you let a few things slide (i.e., give more warnings, maybe) during the worst of a flare, letting our kids know that the "real world" is still out there and won't always make allowances for their behavior as we tend to do, and that there are lines that aren't to be crossed, no matter how crumby you're feeling, is good practice for when the flares die down. Sort of like keeping some ERP techniques in place to combat OCD, even when there's an exacerbation and it's harder for your kid to comply with the ERP. Just maintaining the consistency and "real world check" alive, I think, helps them in the long run. Especially as they get older and are better able to articulate how they're feeling and manage their behavior even during flares. We know our childrens' true nature so, to the extent we can, if we can help them hold onto more of their "true selves," even during exacerbation, and behave in a more acceptable manner, then like PR40 has said, hopefully, that more acceptable behavior will become the more entrenched habit that seems them through even the tough times.

Thus far, we've not found PANDAS to be sufficiently "mainstream" for most psychiatrists to be well-recognized for their PANDAS knowledge. That being said, we found our PANDAS-savvy psychiatrist sort of the old-fashioned way; I downloaded a list of local practitioners and started "dialing for dollars," interviewing each as to their PANDAS awareness and knowledge, and the extent to which they have an interest in staying current with emerging research, etc. It's a little time-consuming, but it has paid off for us, in the end. Other than a list from your insurance provider for psychs accepting your coverage, you might start with "Find Help" tab on the IOCDF web site; you can select by geographic area as well as treatment area of specialty. This is how we found ours in the Chicago area. http://iocdf.org/ Good luck!

Don't know anything about that particular condition, sorry. But when I saw your topic heading, the first thing I thought was: increased testosterone. Could that possibly be a contributing culprit? My DS is not into athletics, but I know two things have contributed to his agitation in the past: 1) puberty, in general, at the onset of which he became highly emotional, argumentative and defensive; and 2) being in crowded, chaotic and/or competitive situations where he otherwise "sucks it up" in terms of his sensibilities and "deals," but then when he comes home, he's done and needs to "let it all hang out" and can get emotional and "tender."

I'm just guessing that your DD doesn't REALLY think she'll "be fine" without a high school diploma. This is her OCD school avoidance talking. And coming from an intelligent kid, they can rationalize nearly ANYTHING when the OCD/anxiety requires it of them. Been there, done that! Our therapists have been pretty consistent in coaching us that arguing with OCD is a non-starter. It won't bring about any positive behavioral changes, and it can help inadvertently feed the entrenched position your kid is already digging for herself. While I know you don't want to be punitive, the goal is to get her back in school, right? So, not as punishment or retribution, but as incentive, you probably are going to have to structure some things. I know the experts always encourage you to start with the positive reinforcement/incentives, but we found those to be few and far between when our DS was in the midst of his avoidance issues in the past. Still, it's worth a shot. Can you sit down with DD and figure out a stepped incentive program for, say, going to school and staying for one period. Then going to school and staying for 2 or 3 periods, and so on? If not, then maybe you won't have any choice but to implement some dis-incentives, and maybe applying some of those "real world" consequences suggested by Mayzoo would work here. Okay, since you're not going to school, I need you to come with me to do the grocery shopping, and you're in charge of tracking the budget vs. spending. Or, okay, since you're not going to school, and school is basically your "job" at your age, you'll need to substitute other jobs/responsibilities for your school time, so here's a list of jobs that I'll need you to do here at home (clean the refrigerator, rake the yard, etc.). Then there would need to be consequences if she didn't fulfill her obligations, and I think anything that you've given her access to as a privilege (cell phone, screen time, time out with friends, etc.), rather than a right (housing, shelter, sustenance, etc.) could and should be on the table. After all, as you've pointed out, you can't have any of those privileges without the necessary financial resources, and if she's not doing her job (going to school, or a substitute), then she can't hope to "earn" these things.

Very interesting. Never heard of aboulia, and none of our practitioners have ever mentioned it, either. But now I'm definitely going to inquire of our psych on our next visit . . . she's got a curious, though professional, kind of intellect and just might know of it.

Another vote for sach b. Florastor is an expensive name brand, but we've had success with a less expensive version made by Jarrow (via the Vitamin Shoppe), too. Also, lactobacillus gg (name brand Culturelle) is supposed to be similarly impervious, according to our ped. I would still see if I could space it out, though, if even just a little.

With respect to DNA research, I know that, last I heard, Dr. David Rosenberg at Wayne State (and some affiliation with Children's Hospital of Detroit) was studying heredity with respect to OCD, glutamate, etc. I found this, dated September 2014: http://www.uptodate.com/contents/obsessive-compulsive-disorder-in-children-and-adolescents-epidemiology-pathogenesis-clinical-manifestations-course-assessment-and-diagnosis

On a tendency toward "constant underlying inflammation" . . . that topic title caught my eye. Inflammation is all the talk of late with medical practitioners of all ilks (just Google it) as a major contributor to health woes, and it doesn't have to be infection-related. Yes, for some, it appears that responses to dairy, gluten, wheat and/or sugar can be the culprit. For us, environmental allergens are a major issue in that regard. And while I have no doubt that continuing further on the spectrum of "clean eating" that we generally attempt but are by no means fully committed to at this point would probably help my entire family with our bouts of inflammation. But then there's real life . . . At our last psych appointment, our PANDAS-savvy psych noted that, in our last two appointments (six months apart), DS has appeared to be suffering from some inflammation, predominantly upper respiratory. But we'd just had a full run of labs done, and he comes out clean in all respects, plus he has a history of major allergies, so we've attributed it to that. Mold, in particular, has been very high lately. She pulled out some recent research she's been taking in with regard to inflammation and psych issues, and asked what we've been doing for the allergies . . . Flonase, but otherwise, OTC responses. She's of the opinion that keeping the inflammation under control is a key concern. She suggested we talk with DS's regular MD about Singulair, as it is specifically an anti-inflammatory asthma/allergy med. DS's doctor thought it was worth a try, and the results have been remarkably good. His nasal and upper respiratory response has been good, but we're seeing a calmer, less-stressed, more focused high school senior, as well. I think there've been some other negative, as opposed to positive, responses to Singulair noted here on the forum, so I'm not sure what makes the difference . . . methylation issues, perhaps? Anyway, it definitely seems to be helping in our case.

This is not accurate information. Misophonia is NOT a form of OCD. OCD is often a co-morbid disorder but not all, or even the majority of people with misophonia have OCD. It is believed to be a sound processing disorder that causes certain sounds to bypasses the cerebral cortex and stimulates the limbic system directly which in turn gives a range of emotional responses ranging from fight or flight instincts, disgust, or even sexual arousal. A physical response followed by an emotional one is set off by some sort of trigger sound which is neither an obsession nor a compulsion but a physical response to an external stimuli. No research has demonstrated that OCD like treatments are successful for misophonics in any way. Anecdotally, many people who have mistakenly been treated as OCD and undergone ERP treatments or desensitization techniques have suffered form PTSD as a result with trigger sounds worsening or increasing. Hmm. Can you can share some links to research papers, etc.? Are you and others with your knowledge working to correct the misinformation circulating within the OCD community at large, as doctors and therapists entrenched in OCD treatment have been the sources of my information along these lines to date? Is it possible that there is more than one form or manifestation of misophonia, one of which is, in fact, the result of a perseverative obsession, and the other of which is brought about as you've indicated? I actually do know a patient who suffered from this and was successfully treated via ERP, so while perhaps it is not efficacious in all cases, it appears that it can be in some.

That's great news, dut! So happy for you and your family!

I don't know of a specific name for a similar reaction to visual stimuli, but OCD has a ga-jillion different forms it can take (usually where a person is most vulnerable emotionally), so I'm sure visual stimuli (especially strong ones, like blood, feces, vomit, etc.) could have a similar impact. And yes, Trinitybella, to the extent that an autoimmune cascade via any number of triggers (strep, lyme, etc.) can cause OCD behaviors, I would think that it could inspire misophonia in someone. Exposure response prevention (ERP) therapy is usually the most efficacious response to these OCD conditions . . . "normalizing" the sounds or the sights gradually over time until the person no longer experiences the extreme "over-reaction" response. Tough to do, but worth it in the end.

Yes, it's a form of OCD. I have a friend whose niece has it to the extent that she can't stand the sound of anyone else chewing, including her family. So she chooses to eat her meals in isolation.

While long-term use is not recommended for gut health, the only thing we found that worked for our DS was Pepcid (histamine receptor blocker). I would dose probiotics with it, also, just to ensure gut flora doesn't get unduly disturbed by the Pepcid, but it worked wonders for the eczema and appeared to help the other flare symptoms, as well.