MomWithOCDSon

I know that Alexian, with at least one home base in Hoffman Estates/Arlington Heights, has been boasting about its therapy programs for kids and adolescents, but I don't know any specific therapists there to recommend. I've heard Dr. McGrath speak at various conferences and he seems very knowledgeable and engaging; however, I believe he runs the program and so likely doesn't actually maintain a patient load of his own. http://www.alexianbrothershealth.org/abbhh/ocd-anxiety We have also used a therapist with the Anxiety and Agoraphobia Treatment Center in Deerfield: Dr. Brian Schmaus. Finally, when our DS was very young, he worked with a clinical psychologist in private practice in Northbrook; his name is Dr. Brynn Jessup. Though Dr. Jessup used some Exposure Response Prevention (ERP), he was more a CBT therapist and was very good with our young man (ages 6 - 10). You might also try the Find Help tab on the International OCD Foundation web site; that's usually where we start in our search, and then it's a matter of phone interviews and an introductory meeting to see how the "fit" is. Good luck!

I've got a Beach Boys song in my head . . . . Good, good, good, good vi-bra-tionsssssss!

Update . . . received our order yesterday afternoon, so started DS on this "super-combo" supplement last night. Too early to judge efficacy experientially, but was a little bit dismayed by one revelation: "Serving size 9 capsules daily," says the information on the bottle. So much for cutting back on the sheer number of capsules DS is required to take daily, particularly given as, in order to get a combination of all the supplements in the doses he currently takes daily, I purposefully had to split the quantities in half, with the internally-adopted understanding that he would be taking the supplement twice daily, rather than just once. So, that's 18 capsules a day, 9 in the morning and 9 at night. On the up side, however, if these are effective, even though he won't really cut down on the sheer number of required capsules to swallow, at least he won't need to worry about having nine different bottles/jars on his dresser or taking the right combinations of the correct things every day. He'll ideally have this single bottle and just count out the correct number of the same capsule, twice a day. Simplifies things somewhat, if not to the degree I was originally anticipating.

Thanks Mayzoo! Always good to hear first-hand experience. I don't have a dog in the fight . . . just noticed some less-than-stellar notes, and wondered if it was by virtue of the brand/quality. Glad your DD is doing so well with it.

Mayzoo -- Just FYI, you might want to read some of the review of the Cibdex product before you purchase. Or maybe you already have, and your experiences has been a good one (sorry, didn't go back and read all the previous posts). When I was looking into CBD oil, this one did not get a lot of good reviews for efficacy, even at hefty doses.

Has anyone else watched the new television series "Black Box"? It's about a brilliant neurologist who's able to diagnose and treat people with very puzzling neurological and psychiatric symptoms while she herself battles with a bipolar diagnosis. The first episode I thought was okay . . . not life-changing, and the same with the second. But this most recent one (sorry . . . not certain what night it actually airs as I tend to set my DVR for most things so I can fast-forward through commercials) was encouraging in that it seemed to rip a page from many of our lives, and was a particularly spectacular nod to Suzanne Calhanan's "Brain on Fire." A woman is brought into the hospital with puzzling neurological symptoms . . . an MRI shows a "lesion" in one lobe of her brain, but without a biopsy they can't determine if it is a tumor, infection, or what. She checks herself out, only to return when she realizes that all she sees and all she intellectually recognizes is a "half-world," as though only what her right eye sees is all there is. The fictionalized brilliant Dr. Catherine Black has her copy three drawings, one of which is a clock; the patient draws only a half-clock, and like Suzanne Calhanan, puts all 12 numbers on that one half. They wind up doing a lumbar puncture and determine that her condition is the result of tuberculosis which has impacted her brain! Infection! I need to watch it again because, per usual, I was double-tasking, so I'm not sure if they truly did leave out a lot of the intermediary information/diagnostic steps (skipped them for the sake of time in a 60-minute series), or if I just missed hastily provided information because I was splitting my focus. At any rate, I was truly pleased to see even a fictionalized account that tied infection to psychiatric manifestation, treated it, and saw the issue resolve (with therapy, by the way, which was also part of the treatment plan).

Since everyone's experience tends to reflect a lot of similarities while also being plagued with individual peculiarities, I know it can be difficult to know which step is the "right" next step in your particular situation. Hopefully, with some of us chiming in with our experience here, you can filter through and find what will work best for your DS. Our experience suggests that ongoing abx can be very beneficial, so long as you keep the gut healthy with probiotics. Our "agent of doom" appears to have been strep (based on very high titers), but because our DS was entirely classically asymptomatic, I don't know that we'll ever know for sure. What we did find was that for the first couple of years of healing, every time we took him off the abx, his behaviors backslid . . . we'd put him back on, and he'd regain the balance he's achieved previously and then continue with more, though albeit subtle, gains. As for the SSRI, there are some here who've had abysmal experiences with them, but ours has generally been positive. I think that, depending upon the PANDAS-savviness of the psych or doctor who's prescribing, I'd just be very careful about and mindful of the dosage. So many docs will prescribe a "low dose" by that "average patient" standard and not understand that our kids generally need an exceptionally low dose for ideal functionality; so there can be an inadvertent activation by too high levels of SSRIs. Just go low and slow on dosage, and if you see any negative behaviors that you can isolate being the result of the SSRI, back the dose back down or cease it altogether; any negative impacts should fade fairly quickly. Good luck!

Well, I just placed our order. I have a friend who dropped me a line, said she's been using Vitagenics for about 6 months now, and so far, so good. So I decided it was worth a try. Want to get them and start using them early enough so that we know definitively they're as effective as we need them to be before DS leaves for the summer. Crossed fingers!

They did respond to my query regarding the FDA letter, which I guess is a good sign. And it was well-written, for which I give them some additional credit. However, not unlike what the FDA charges, there was nothing specific in the response that makes me feel convinced they're not potentially going to sell me a supplement that's supposed to contain everything I want, but not actually fulfill the order correctly/fully in terms of volume of supplements and/or the individual components. If I had access to a lab at a reasonable price, I suppose I could order it and then have it analyzed, but that's not really an option for me. Here's the response: Thank you for your email. We understand your concern regarding the FDA letter. Since then, we have made the corrective actions and improved our production and testing procedures. As this letter was issued in 2012, we have not received any further letters regarding this issue. With the FDA, no news is always good news. We continue to test all in-coming material and out-going finished products to ensure quality. Since 2012, we have also made changes to our in-house lab, quality control, and we've brought on board a variety of qualified employees to make changes and improvements. Regarding the testimonials on our website, they are essentially blind since we are not authorized to release any customer's private contact information, so I understand what you mean. You may, however, feel free to contact any of our suppliers from the following link: http://www.vitaganic.com/aboutus/our_raw_materials.jsp. We source from US suppliers only and any material that fails to meet specifications are rejected by us immediately. We do appreciate your email and we hope this helps to ease your concern. If you have any other questions, please feel free to ask. Regards, Tiffany So, now I'm contemplating maybe placing an order and seeing how DS does taking the supplement?

Oh goodness, you're in Texas! There are a few practitioners there, as well. Saw your post over on the PANDAS forum, so I think you'll be in very good hands soon enough!

Hi! You might want to post over on the PANDAS forum here since that one tends to be more active here at ACN, especially with regard to the questions/concerns you're posing. For me, the positive response to abx would serve as a big clue that there is an infection and/or auto-immune related issue in the mix. So, yes, I would pursue PANDAS/PANs. Over on the PANDAS forum, you'll find that many families have utilized one or more of each of the potential interventions you've noted, to various degrees of success. Unfortunately, at least insofar as the research and experience goes today, there doesn't seem to be a single protocol for all PANDAS/PANs sufferers. We found that long-term abx (2 years) worked for us while others have done IVIG, PEX, etc. Is your DAN PANDAS-savvy, and can you get to him now that he's relocated? If not, check the pinned threads at the top of the PANDAS forum for a list of PANDAS-knowledgeable practitioners in your area; I know there are many families from California who are active here and have successfully found treatment. In the meantime, presuming you can maintain your DS's healthy gut, I would keep him on the antibiotics and track his progress with videos, a written journal, etc. These will be very helpful tools for your practitioner and will also help you more quantitatively assess the gains, even on days in which the changes are more subtle. Good luck!

With regard to how some kids react to Singulair, etc., I'm becoming increasingly convinced that how our kids (and we) react to medications has something to do with the methylation cycle and what mutations may be involved, causing and/or enhancing "disconnects" in it. I've heard Dr. Swedo make similar statements about immune dysfunction, and in our experience, it can be a chicken and egg thing; in my DS's case, he was displaying hefty seasonal allergies prior to our discovering PANDAs, and his sensitivity to those allergy triggers has diminished significantly since we've been dragged into the world of immune dysfunction! Maybe it's partially an age thing. When the pollen is high, we use Zyrtec in addition to the quercitin we use pretty much year 'round. DS also has a propensity to hives, eczema and reflux when he's exposed to illness or experiencing high stress levels (ACT's, a new social situation, etc.). We've found Pepcid (an H2 receptor antagonist) to be tremendously helpful during those periods.

Well, Part 2. I've been researching this company to see what I can find out while I await anyone else's experience. There was an FDA letter issued to them back in February 2012 questioning their quality controls; apparently the company responded but did not, to the FDA's satisfaction, anyway, respond with sufficient documentation. I cannot find anything issued more recently than that date, so it sort of begs the question what's happened since then? I'm a little cynical about the FDA to begin with . . . feel as though they're frequently mostly looking out for Big Pharma, rather than us little people, but I don't want to be foolish and impulsive, either. Plus, the trouble that companies such as 23andme have had with the FDA just support my self-serving view. The company web site is very well put together and organized, and they offer pages and pages of testimonials; however, those are mostly "blind," without any way to contact the posters to verify. I sent an email to the company's Information email address, telling them that the FDA letter is prominent when researching them, so a full disclosure and information relative thereto is sought by me, and probably by other potential clients, as well. We'll see if they respond, and what they'll offer when they do. I SO want to believe that a product such as this is available and reliable! There's a sucker born every minute, or so they say. ;-)

Hoping someone here can help me with vetting this company? Sending DS off this summer for three weeks . . . and then hopefully college in a year . . . and staring down the barrel of how do we handle all these supplements? What teenager/college kid is going to take a dozen pills each day without being reminded? So I thought I'd see if I could find a place that would make a custom "multi-vitamin" for us that would contain only those substances we KNOW work well for DS, without any of the extras found in standard multi-vitamins. Found this company and did a little trial "build" of our custom supplement . . . almost seems too good to be true. Apparently, we can get the appropriate amounts of NAC, D3, quercitin, B6, zinc, etc. in a single capsule with a 90-day supply costing approximately $1.37/day! I KNOW that's cheaper than what we're currently spending, and it would reduce the pill intake 10-fold! The only additional items he will need will be fish oil which, I suppose for obvious reasons, can't be compounded here. http://www.vitaganic.com/;jsessionid=A65FAC55874682151477999C5522791A Thanks!

We have used both olive leaf extract and monolaurin (the active ingredient in coconut oil without all the fat) as antibacterials/antivirals, but only as prophylactic measures, not as treatment. I'm not sure you could successfully ingest them in sufficient quantities to be effective treatment against infection or virus. We didn't see any negative impacts on DS's gut, but then he did pretty well through treatment abx with sufficient probiotics and an occasional bentonite clay treatment. Things were a little rough at first (diarrhea), but his body seemed to regulate to the abx after a couple of weeks, and it went okay after that.

When I clicked on the link above, first I got a weird greeting card site, and then what I got was a video link that popped up in the middle of the greeting card site with a story called "Hope for Tessa." It must be related to the story you've referenced because it walked through the original bi-polar dx of a teen named Tessa, and then how doctors at Stanford diagnosed her with PANS and treated her successfully. I got no written article, though. Weird. And Nicklemama, in the video, they specifically reference PANS, and Dr. Franken? (female physician at Stanford) noted, in her own interview, that PANS was not fully understood at present and carries with it a broad definition, and that they think a number of medical issues may be behind what were formally understood to be strictly psychiatric disorders.

My DS has been on an SSRI (low-dose) for some time now, predominantly for OCD, though it has helped mood, as well. He currently takes Zoloft. I have another family member who suffers from clinical depression; he has tried to go SSRI-free on a couple of occasions, but his chemistry just will not hold, and he finds he needs the SSRI support. He's currently taking Prozac and is like a different person while taking it as compared to not taking it. The difference is profound . . . in a good way . . . with the help of the Prozac.

Cobiotic, as in enzymes?

We did Augmentin XR for two years straight. There was some gastro "adjustment" initially, but once DS got accustomed to it and we started regular probiotics, there were no issues, really. A good (i.e., expensive) mixed strain probiotic (we used Renew Life Ultimate Flora Critical Care (50 billion units) and sach b daily. Now, off abx for over 2 years, we have cut back to more affordable options (Culturelle daily, sach b when tummy issues arise, and Ultimate Flora on a very occasional -- maybe once per month) basis. We also used some bentonite clay occasionally during abx regimen on the premise that it would help "sweep" out detritus (dead organisms) from the intestinal tract. Some people use charcoal for similar purposes, I think.

I honestly did not know that Vitamin C works as an antihistamine, but that's good news! We're fans of SolaRay's "QBC Complex" which is a combination of quercitin, bromelaine and Vitamin C; both DS and I take it daily, and I can tell a difference in terms of my response to seasonal allergies (pollen) if I skip too many days. I always thought it was the quercitin doing its thing, but maybe the Vitamin C is playing a role, also.

Lydiasmum -- we've had great success with quercitin and Pepcid. Quercitin, as I understand it, prohibits the body's production of histamine at the T-cell level, so the body literally isn't dealing with as much histamine as it would be without it. Pepcid, meanwhile, blocks histamine receptors in the gut.

You might go ahead and place a call or email to Dr. K. and inquire about his current protocol. And/or perhaps others who've seen him more recently will chime in here. These doctors, generally speaking, continue to gain more experience and information and hone their treatment protocols accordingly, so I suppose it's possible that Dr. K. has made some changes, as well. It would be worth checking, I would think.

We liked Dr. K.; he seemed very astute and picked up on things with our DS very quickly. His vast experience in this particular area definitely shows. What we weren't convinced of at the time, however, was that Dr. K.'s protocol was the right one for our DS. Unless things have changed, Dr. K. has pretty much one treatment plan: IVIG. He was willing to prescribe antibiotics following IVIG for a period as a prophylactic, but he did not/does not subscribe to abx as an effective treatment plan on their own. Meanwhile, we'd read "Saving Sammy" and, based on the multitude of similarities between our DS and Sammy, had managed to convince our pediatrician to give us an abx trial, to which our DS was responding remarkably well. So we weren't convinced the IVIG was a "better" answer for him. As our abx and supplement usage continued to help DS make headway, we decided against going for IVIG altogether, so we didn't return to Dr. K.

Welcome to the forum, though I suspect you'd rather not be here, given the choice. Yes, your DS's OCD behaviors sound very familiar, and given your knowledge that they appear to have cropped up only recently, in your shoes, I would follow my gut and investigate further. Especially knowing your DS was exposed to strep. My DS, for one, is entirely classically asymptomatic for strep so it literally took us years to both 1) put the pieces together and 2) get a medical professional to take us seriously and help us. But you're ahead of the curve, catching on so early, and PANDAS/PANS is at least somewhat better known and documented today than it was nearly 5 years ago when we were first trying to get help. Under the pinned threads at the top of this PANDAS forum, you'll find loads of basic, opening information to help you get started, including the testing you want. You could start with a basic throat swab culture for the strep since the bacteria could be found there, even if your DS isn't reacting to it with classic pain, etc. But swabs are notoriously unreliable since lots of nurses and practitioners fail to reach the appropriate area and/or to swab thoroughly enough. So blood tests are a good, more reliable approach: ASO, anti-dnase B and a full immune panel. If your DS could have been exposed to Lyme disease, tests for tick-borne infections and co-infections is another way to go. We saw Dr. K. at one point, but he did, at that point in time, at least, accept our insurance. So I'm sorry that I can't help you with your question about his private pay, out-of-pocket costs. This forum was a life-send for us, as it has been for lots of families, so you are sure to find lots of answers, support, help . . . and maybe some additional questions, too . . . here if you poke around some more. All the best to you and your DS.

Okay . . . more info. They cannot travel, this DS is in such bad shape (will not leave his room to go to the bathroom, in fact). This father participates in a local support group (www.pandasitalia.it), and though such connections has been given a prescription for IVIG (he says through email, so I'm led to believe it is from a doctor either here in the states or somewhere abroad), but cannot get an Italian hospital to fulfill the order. I will suggest he try to connect with Dr. T., if he hasn't already. This family sounds relatively well-informed and have a number of supplements in play, have tried antibiotics, etc. But something isn't getting to the root of the problem. Thanks for your ideas and feedback. I've given the dad a link to this forum, also, but I think the real problem at this moment is less a lack of information, and more a lack of care options locally.