MomWithOCDSon

With the Jarrow sach b., I think you can open the capsule? Maybe you could mix it into a cup of applesauce or yogurt and she would willingly eat that? It doesn't have any taste. I would just avoid trying to hide it in something warm/hot, as high temperatures might kill off the beneficial bacteria. Good luck!

Yes, this all sounds very familiar. I would agree with fuelforall that CBT for the anxiety, providing your DD is compliant and will undertake the "homework" with your help, will go a long way toward supporting her in reclaiming her own power and confidence in everyday tasks and activities. As for the speech issue, we had similar issues except that, rather than standard stuttering, it was repetition of full words . . . three, four times . . . before he could move forward with completing a sentence. During the depths of his PANDAS, my DS could rarely complete any sentences at all. Yes, I think it's PANDAS. But it can all get sort of mixed up and cyclical when PANDAS is in the mix. She becomes anxious, so her thinking gets a bit confused, so her speech gets a bit confused, which in turn feeds the anxiety again, and on and on. The true trick is getting her off the merry-go-round of anxiety and anxiety-feeding issues. CBT can help. Various supplements (particularly anti-inflammatory supplements) can help. OTC anti-inflammatories (Ibuprofen, Aleve) can help. So can temporarily "simplifying" her life . . . eliminating anxiety triggers that are not crucial. Soothing her fears about "being different." Pointing out to her the truths that everyone feels "out of sorts" sometimes, and its okay to take some time out from social activities to "chill." We've found great power in "normalizing" some of the anxiety . . . I think sometimes our kids get so sensitive to being "sensitive" and "anxious" that they tend to think that ANY amount of anxiety is applicable only to them, even when it can be a normal part of growing up (being in a new place, with new people, in a new situation, etc.).

NAC is very helpful for some while very unhelpful to others; the difference may lie within the methylation capabilities of each individual. In my DS's case, he is, by most indicators, an "under-methylator," and NAC has been very helpful/supportive for him. We follow the dosage that was utilized in a Yale/NIMH trial for treatment-resistant OCD; there were trials for both children and adults. You can PM me with an email address and I can share that study with you, or you might be able to Google it and still find it on-line. My DS is adult-sized so we follow the adult dose, which is 1800 mgs daily. Good luck to you!

Though in our situation there was no return of fever, the unwanted behaviors (anxiety, etc.) always ramped up when we ceased abx. In the end, our DS was on full dose abx for almost 2 years before we could successfully wean him off and not have a "rubber-band" effect in terms of his anxiety and other OCD behaviors returning full-strength. It appears the medical community still has some catching up to do in terms of the strength and duration of abx therapy in the treatment of PANDAS. I know there's concern about creating resistant bacterial strains and similar issues, but there are both health and quality of life issues that should not be so quickly dismissed at the feet of those concerns. My DS was on abx for nearly 2 full years, straight. I just got an email from Beth Maloney which stated that Sammy (of "Saving Sammy: Curing the Boy Who Caught OCD") was on abx for 4 years. Frankly, 14 days . . . even 30 days . . . of abx is NOT adequate or appropriate treatment for most cases of PANDAS. And any contention that it is or should be is just flat out ridiculous.

If you PM me an email address, I can send you the research I have on the topic. USF is University of South Florida, and Dr. Eric Storch is a colleague of Dr. Tanya Murphy, one of the leading pediatric PANDAs docs here in the states. Dr. Storch is on the research/psychiatry side of things and has delivered a lot of lectures and panel presentations at the International Obsessive Compulsive Foundation conferences. Because of USF's generally pediatric focus, much (though not all) of his research is based on child subjects; however, he's very knowledgeable with regard to OCD and general pharmacology in the treatment of OCD, irrespective of age group.

Well, I know that not all SSRI's are created equal. Some of the earlier, or "first generation" ones, I think, many stay away from. I've heard about some issues with Paxil and Wellbutrin but again, those stories were typically affiliated with trying to wean off the drug and doing it at a schedule that wasn't appropriate (too fast). You might want to do some personal research into some of the specific SSRI's that you might consider or that your doctor has suggested. For instance, Dr. Storch and SFU have published a number of studies with regard to Zoloft and OCD, and that's ultimately the SSRI we've landed on . . . and stayed with . . . for about 6 years now.

I don't know the BioGaia probiotic, so I can't speak as to whether or not another one would necessarily be "better." I will offer, however, that my DS was on antibiotics for nearly two years, and we had no yeast overgrowth issues by using three probiotic and "cleaning" supplements: a mixed strain probiotic by Renew Life, a sachromyces boulardi (sach supplement by Jarrow (same probiotic strain as in Florastor, but less expensive), and bentonite clay. The mixed-strain probiotic we gave every day, as we did with the sach b. Sach b is, like candida, a yeast, but a beneficial one that helps crowd out candida; it's also impervious to antibiotics, so you can dose simultaneously if you need to without giving up too much of the probiotic to die-off. We would use the bentonite clay once per week or so to help "sweep out" the die-off in the gut. Hope things go well for here on out!

See response in PANDAS forum, Wombat. And hang in there!

It's been our experience that SSRI's, in the right dosages and at the right titration schedule, can be helpful. And we've not seen any lasting ill effects due to taking "the wrong one" or even the wrong dosage. However, I would be very careful and wary of starting off at any dose greater than, say, 1/2 the normally recommended dosage; for whatever reason, PANDAS/PANs folks tend to be more sensitive to SSRI dosages than non-P/P folks, and few prescribing doctors or psychs truly understand that. Secondly, we know from some bad experiences, both with P/P and non-P/P, that the titration schedules frequently recommended by these docs -- both up and down on dosages -- are far, FAR too rapid. And that can really mess with your brain. Both my P/P son and my non-P/P relative experienced "zaps," activation and wide, crazed mood-swings when going up or attempting to come off these SSRI's. Honestly, I don't know where psychs get their "recommended schedule" . . . the Big Pharma companies, maybe? But they are patently inappropriate, and almost any patient who's experienced the disturbing results of moving too fast in either direction will tell you the same thing. Apparently, though, because few of these patients have medical degrees hanging on their walls, their experiences are deemed "merely anecdotal" and not taken into proper account. I will say, however, that despite some bad weeks when increasing or decreasing these doses too rapidly completely screwed with my loved ones, there were no "lasting" bad effects in the end. Just harsh and painful learning experiences, which I attempt at every opportunity to share with others so that they can avoid falling into the same trap. In the end, the SSRI at the right, steady dosage has been tremendously helpful for both my family members. Sorry to say, I just don't think you can entirely trust the doctors entirely on this one, even the most well-meaning and/or experienced one(s). Unless they suffer from a similar condition themselves and take these medications, also, they have no true experiential information to bring to the process. So, I would say again, halve the dosage, and titrate up at half the speed they recommend, at most. And if you decide you don't like how it makes you feel, or if even at a standard dose, it's not helping sufficiently, then you must titrate down and off again, very slowly. And don't forget to give it at least four weeks at the "ideal" dosage before you throw in the towel and deem it ineffective. Most doctors will tell you it can take up to 6 weeks for an SSRI to become fully effective, and that is likely true; however, in every case (and we've had lots -- years --- of experience with a multitude of them), the positive impacts were in full force by about week 4. All the best to you!

Thought I'd post here since this thread seems to be still "primary" in this Nutrition and Supplement forum, in the event it's getting views despite not having many posts other than my own. Unfortunately, the "blush is off the rose" with this particular vitamin manufacturer. When I last attempted to re-order, the web site was down. When I emailed the company directly, I was told that I could reorder; however, in addition to the standard cost of the supplements themselves, I'd be subject to a "testing fee" that effectively would double our all-in costs. Something about new rules enacted by the FDA impacting their business. I'm all for some regulation of the supplement industry, but we really need to do something about the out-of-control spiraling costs of keeping oneself healthy in this country! At any rate, we're back to the multiple bottles, multiple supplements. My latest attempt to simplify this a bit is to spend an hour or so every few weeks, creating our own "vitamin pacs," putting the right supplements into little Ziploc baggies sized for the purpose (got those at the Vitamin Shoppe) that DS can just grab and gobble, without having to sort out how much of what he's taking when. He's going to have to do that for himself eventually, I know, but if I can free him up in that regard a little longer, I feel as though that's contributing to him "not sweating the small stuff," you know? And the baggies are re-usable, so they're not a drain on financial resources. Hopefully, another affordable, "designer supplement" company will come to light in the near future. If you hear of any, please let me know. Right now, the only alternatives I've been able to find are ones that tailor their formulas only so much, for "athletes" or for "the immune-challenged," etc. But I haven't found anyone else who will actually let us tell them, specifically, what goes into each capsule.

We have had similar experiences to yours with wide stretches of "unscheduled" time; DS just seems to function better overall with a routine and things on his plate. While the thought of having "nothing to do, for once" seems romantic and fabulously free to him in the abstract, the reality of it is far more difficult because he winds up over-thinking and over-analyzing how he is or is not spending that "free" time. Our DS attended local park district day camps up into junior high school; they were typically only half-days in length and not terribly expensive, but they gave him a routine and planned activities around other kids 5 days a week during the summers. Once he outgrew those, we got him involved with some "fun" summer school classes which, once again, were only a few hours per day, at most, but gave him that social interaction and routine that he thrives on. For the last few summers during high school, he's either taken a class and/or had a part-time job, but we find it's still helpful for him to maintain a "to do list" for himself with things he either needs or wants to accomplish each week, and then he gets some satisfaction from checking those items off. Can be everything from reading a book to doing his laundry to walking the dog. So I would join in with the others in suggesting that, even if a full-time camp isn't an option, going into each week with a plan of some sort (library on Monday, play-date with a friend on Tuesday, maybe an on-line math class on Wednesday, etc.) might help you all maintain some sanity and keep your DD from spinning out from ennui or unexpended energy.

Thanks, Kim and Smarty! Well, the skin thing resolved more or less on it's own over the course of about a week. We wound up pushing some anti-inflammatories and that seemed to do the trick. Maybe a bizarre allergic reaction to the burst of tree pollen in our "Tree Town America" setting? Hard to know . . . almost like an exaggerated case of hives, I guess. Hope your Springs are going well!

Billn - Stick to your guns. Wear the mantle of "Crank" loud and proud, if you must. When my DS was going through what your DD is now going through, I failed to do just that. There was less information, less back-up, less support, and I took the words and advice of "professionals" to heart and abandoned my better instincts. We couldn't "prove" PANDAS sufficiently, and we couldn't find anyone local to help. So we did things their way for another 6 years. As a result, my DS and our entire family were forced through tougher experiences than might have otherwise been the case, and my DS's return to health and functionality was a steeper climb than it needed to be. Now I'm a full-grown Crank, and I'm never going back.

Just to ditto Nicklemama, my DS has also been on Flonase for years; it works wonders during allergy season and doesn't interfere with any of the other interventions. Save your money . . . forget the portal on this one!

My "so what?" moment on this comes from considering the broader picture, and heeding the work and opinions of true experts who have earned my trust, like Dr. Bock. Maybe the MMR, in isolation, isn't in and of itself directly correlated to incidences of autism. But if the entire vaccine schedule were to be studied as a whole, then they would actually be examining (and properly so, IMHO), the cumulative impacts of frequent and continuous insults to the immature immune system, as well as repetitive doses of the "inert" preservatives/agents like thimerasol and aluminum. Perhaps the MMR is just "the straw that broke the camel's back" in some instances and thus direct causation isn't demonstrable. That doesn't mean it isn't a contributing factor.

Unfortunately, too many doctors fulfill an ethical responsibility to "treat" by "treating" with the wrong responses, such as multiple psych drugs, recommendations that the parent switch up their "parenting techniques" and the like. Drives me nuts.

I'm sorry that I don't really have any answers, I don't think. I would just advise you to go low and slow on any psych drugs . . . start the dose low and don't increase it too rapidly. Also, know that, in our experience, time is a necessary component of successful treatment. I know you've been dealing with this illness for a long time, and everyone is impatient for relief, but I think time is especially necessary for folks who have suffered with the condition longer without appropriate intervention. Our DS had PANDAs/PANs for at least 6 years (and we suspect longer) before we got a proper diagnosis, so his climb back out from the depths of his illness has been longer than it was for some younger kids for whom the diagnosis and treatment were made much quicker. We're on Year 4 of The Return to Health, and things are going well, but I'll say that the first year was especially dicey, and Year 2 had some significant ups and downs, as well. Stay strong!

A class chorea symptom is "piano playing." Have the child stand with his back against a wall, close his eyes, and hold his arms straight out in front of himself, chest height. If his fingers twitch and move in a motion similar to someone playing a piano, it may be chorea. I'm pretty sure there are some YouTube videos on the topic you could reference for comparisons. As for the immune dysfunction versus infection, yes, I would think that's entirely possible, but that's something Dr. Latimer should be able to speak to, I would think.

Yes, allergies can certainly trigger PANDAs/PANs behaviors, in our experience; the allergies do set off the immune system which is, after all, part of the problem. We would call the confusion your son is experiencing "brain fog," and yes, we've seen a lot of that, too. I suspect that's a result of excess glutamate and/or histamine, flooding his receptors and making it difficult to focus and/or "separate the wheat from the chaff," as it were. I think you're on the right path with antihistamines, and I might also suggest you try Pepcid (famotidine - an H2 antagonist that blocks uptake of histamine in the gut) for a period; make sure to provide some good probiotics along with the Pepcid, however, so that the flora balance doesn't get thrown out of whack. We find it to be very helpful at peak allergy season(s), though. Have you tried n-acetylcysteine (NAC)? It doesn't work for everyone, but it works well for our DS, and my son and yours seem to have a good bit in common with respect to symptomology. NAC is a glutamate modulator, it's easily available OTC, and there've been a couple of Yale/NIMH studies on its use and effectiveness in addressing OCD. It might be worth a shot.

Emmalily -- So glad to hear you're doing so well and that you're able to manage the flares! I'm sure you wish the flares didn't occur at all, but it's a major step toward full independence and a full, rewarding life, don't you think? Thanks for checking in and giving us all a bright beacon for our kids' futures! My DS is doing pretty well, himself, and will be entering college about an hour away from us in the fall. Thanks for your earlier guidance regarding accommodations in college; the disability office at the university has been awesome, accepting his senior year high school IEP as sufficient information for college accommodations (they only denied one feature which, frankly, DS hasn't utilized much in the last couple of years, anyway). And they've granted him a private dorm room, too, which will work well for him, at least for his freshman year, we think. We're cautiously optimistic about his future and opportunity there. Thanks again for the good news and solid advice in recent years! You go, girl!

You experienced no impacts/benefits from IVIG at all? Sorry, I can't remember your whole history or what other routes (besides the abx you note above) you've attempted. Please do not give up. There's an answer for everyone, I'm convinced. It's just that responses and achievements are so varied among the sufferers of this condition.

I don't know anyone in South Bend, but if your child can withstand a car-ride to Chicago, there may be a couple of viable options in this area. If you check the pinned threads, you'll find PANDAS-knowledgable practitioners, and perhaps one of those can help you sooner than your standing neuro appointment. As for hunkering down and making it through without abx assistance until mid-May, if unavoidable, I would try the following: try regular dosing with ibuprofen (anti-inflammatory); try adding olive leaf and/or coconut oil to vitamin regimen (natural anti-bacterials); if your DD is having trouble sleeping, try adding a low dose (1 mg) of melatonin about one hour prior to lights out. I'm so sorry you're going through this, and as a single parent, to boot. In general, pushing anti-inflammatory agents in all forms (through supplements, through diet, through OTC meds) may help you weather the storm. But if you have the option to travel perhaps a relatively short distance and see a doctor in the next week or so, I would give that a shot. We know from experience that lost time is very difficult to regain. Hang in there!

DS (18) is doing well behaviorally, academically, emotionally, etc. He's developed a physical symptom, however, that we're having trouble identifying. We're actually planning to make a doctor's appointment in the morning, but wondered in the meantime if any of you have come across a similar issue? DS's arms and trunk have taken on a pinkish tone, and when you press down, you get the white spots where your fingertips had applied pressure, and they last a few seconds before the pinkish tone returns. Interestingly enough, while his arms, stomach and back all display the same reaction, there's no pink tone or atypical response to pressure on his legs. It looks like inflammation/edema to me, but he's not feeling unwell overall, no fever, he's still taking omegas and quercitin (anti-inflammatory) regularly, and he regularly eats an anti-inflammatory diet, as well (in fact, we just had a chicken curry last night). He's not recently been exposed to any new foods, soaps or laundry detergents, either. Any similar experiences? Any ideas? Thanks!

In one of her presentations, Dr. Swedo shows either an MRI or a PET scan (sorry . . . don't recall specifically which) that illustrates a "swelling" or enlargement of the putamen and caudate prior to plasma pheresis and then one after the procedure which shows those parts of the brain have receded to "normal" size.

Thank you so much! It's amazing how much "clout" many care providers will ascribe to papers like these from peer-reviewed journals! Helps put an end to all the "You can't believe everything you read on the internet" crap!