MomWithOCDSon

Personally, I think this is likely another instance of being both reasonable and vigilant when undertaking any therapy, be it supplements, OTC's, prescription meds, etc. There is such thing as "too much of a good thing," and just because "some" can be beneficial, doesn't mean that "more" is better. We've been using sach b. for years . . . not daily since termination of abx therapy . . . but as needed. None of us . . . DS, DH or myself . . . has suffered any ill effects. But we weren't consuming copious amounts of it, either. Enough, but not more than enough. When we first started our PANDAS journey, we went very heavy on probiotics, as recommended by some other forum participants and represented as having been prescribed to them by some very prestigious and leading-edge caregivers. There was a lot of detail provided in terms of dosage, timing, etc., and some first-hand accounts of how beneficial the probiotic regimen had been observed to be with these particular PANDAS children. Even at our heaviest dosage (in terms of billions of units), our regimen represented only a fraction of what these people were endorsing/suggesting. After a couple of weeks, however, we discovered that DS was experiencing more, rather than less, gastrointestinal discomfort, bloating, etc., so we stepped down and lowered his daily dose of mixed flora (including, but not exclusively sach b.). Within a few weeks, we found what his behavior and physical comfort demonstrated as his optimum level, and we stuck with that through the antibiotic therapy. Meanwhile, many months later, one of the forum families who had been especially vociferous about high-dosing probiotics = positive intervention began to post about some new health discoveries with at least one child . . . gastrointestinal abnormalities and dysfunction that may or may not have been a result of, or at least exacerbated by, the hefty probiotic dosing. Their lesson learned, but at some price. Caveat emptor, but all things should be kept in context and perspective, IMHO. What is good and healthy for one person may be counterproductive or even harmful for another. I'm a fan of no blanket statements. We benefit by hearing one another's stories, physician feedback, experiences, etc. But we have to make our own healthcare decisions, in the end, and hopefully make them as well-informed as possible, but not on the basis of fear or a single data point.

I don't have any solid suggestions, but I just wanted to let you know I feel your pain, and you're not alone! Hang in there! Hopefully the therapist can help your DD with some of the anxiety/OCD-related issues behind her restricted eating. I SO agree with you about wanting doctors to step up to the plate and treat the whole child, rather than passing the buck! This has been one of my biggest gripes/concerns for the last several years. If they don't have a ready answer, that's fine; but I feel like the least they could do is say, "I don't have an answer on hand, but let me consult with a colleague" or "I need to refer you to someone who has this skill set" or SOMETHING that's helpful! Especially with such an issue as basic as eating! I'm told that integrative doctors are more willing to be more embracing of the patient's entire body of needs, so maybe that's a direction you could go at some point? I haven't tried it as of yet, since we (knock on wood) seem to have a pretty decent handle on things at present. All the best!

Do you know about her serotonin levels? Depression can be about low serotonin levels. Unfortunately, most "remedies," OTC or prescription, take a little time to manifest. Selective serotonin reuptake inhibitors (SSRIs) are frequently used for depression, but 1) PANDAS kids are sometimes especially sensitive to them, so any dosing has to be very low and slow, and 2) even when you find the right dose for your sensitive kid, it can take 4 to 6 weeks for an SSRI to reach full efficacy. You can also try inositol, which is a B vitamin that can work like a natural SSRI; however, again, you have to start low and build up the dosage, and it can take time. Hopefully someone else will chime in, but I've also read that St. John's Wort can address depression, although I think dosage on this can be tricky, as well. Above all, I wouldn't suggest going after a "cocktail" of more than one of these interventions at a time, since you can inadvertently give your kid too much serotonin support, and then you wind up with agitation, etc. (also known as "activation".) Finally, there's been some recent research posted here and elsewhere about lactobillus gg (the probiotic in Culturelle) being helpful in treating depression; my guess is that has something to do with serotonin also being released in the gut, as well as in the brain, and lactobillus gg does something that facilitates that process. Good luck!

Rachel -- There's another recent thread here about seizures and PANDAS and whether or not there's any tie-in, etc. And now you mention "tremors" which, in terms of brain activity and/or dysfunction, seemingly could be a related topic? Is this all unregulated glutamate at work? I don't know. What I can say about those particular pieces, however, is that there are some of us on this forum (not me) who's kids, through EEG, have been determined as having some form of seizure "disorder" even though the seizures are not perceptible beyond the EEG. At least one of these kids was prescribed an anti-seizure medication called lamictal (generic lamotrigine), which is also identified as a glutamate modulator. Meanwhile, my DS (no diagnosed seizure disorder) was prescribed low-dose lamictal by our psych because of its glutamate-modulating properties. Taking it was a turning point for him in his PANDAS healing trajectory. It wasn't an instant "cure" by any means, but it quelled his overly-strong emotional reaction to his anxiety/OCD and almost instantly made him more rational, more capable of being objective and working through his fears, rather than succumbing to them. I can't help but think there's a relationship there . . . .

I don't know a lot, but I know enough to be dangerous! Glutamate is a vital and necessary neurotransmitter; we all have it, and we all need it. What's unhelpful and potentially disruptive is the "extracellular" glutamate, that glutamate that cannot be successfully uptaken and/or absorbed because it's just too much for the receptors to handle. I'm not sure if it was Yasko or someone else, but from some source I got the understanding that what can happen (or what they THINK can happen . . . it's still emerging science) over time is that too much extracellular glutamate can sort of "burn out" or fry receptors and make them unreliable. In terms of what helps with glutamate modulation, and the extent to which one needs that help, and the right supplement or medication for achieving it . . . I think that's truly tied up in the whole methylation cycle and where, if anywhere, your kid's make-up and/or mutations put a kink in the cycle. For instance, n-acetylcystein (NAC) works very well for my DS as a glutamate modulator; however, some kids (like LLM's DD) do not respond well at all to it. But my DS is definitely an under-methylator, while her DD is more accurately described (as I recall -- she might need to chime in here and correct me) as an over-methylator. LLM is so much better versed in all the methylation stuff, I hesitate to go any further on this particular piece, because I will certainly get too much of it wrong! Like everything else, this is just a component of a complex puzzle, and taking anything out of context can potentially set of a ripple effect you weren't anticipating. There are multiple threads here over the last year or so discussing glutamate, methylation, NAC and all manner of connected issues. So I would do some research and take any course you choose sort of low and slow. Observe and see what happens, and then move forward accordingly.

We don't use taurine any longer, but we did use it for quite a while when DS was in the depths of PANDAS. And yes, I agree that it helped. For us, it seemed to support an improvement in short-term memory, which he lost to a great extent for a while during PANDAS. Like he would get in the shower and then become distressed because he'd forget where he was in the process of washing himself. He couldn't remember whether he'd washed his arms already, for instance. Those sort of sequencing, short-term memory reliant tasks were horrible for him for a bit; he needed constant support and reminders. After introducing the taurine for about a week, though, he improved noticeably. He could complete multi-step tasks without losing track, and overall his short-term memory seemed to be in better shape. Good luck!

Amen, Ricki! Have you read Jeffrey Freed's "Right Brained Child in a Left Brained World"? More or less exactly what you've noted, with assessments, exercises and strategies for helping your right brained child navigate academia more effectively.

Tu4four -- can you post a link to the information linking zinc and OCD? Thanks!

The longer you live in, view, breathe, walk this particular PANDAS/PANS path, the more you see how delicate a good balance can be. From your story, the first thing I think of is that maybe increasing her supplementation tipped a balance that the ADHD med had somehow helped her achieve? I mean, many of us have experienced that there can be too much of a good thing, you know? Is it possible that maybe the supplements and herbals, combined with the med, over-supported something like her dopamine and/or serotonin levels, and that has spun her out? What ADHD med contributed to the "miracle," and is she still taking it?

We started out with just the little zinc "melts," Zicam style. We thought DS was coming down with a cold so suggested he start taking those, and coincidentally, he reported a better ability to focus while that was going on. Thereafter, we have used a SolaRay product called OptiZinc which supposedly contains the most bio-available form of the mineral. We get it at our local Vitamin Shoppe.

I've never heard nor read of zinc deficiency being associated with OCD specifically. What does appear to be in the literature is a connection between low zinc levels and ADD/ADHD. We found out (rather accidentally) that zinc supplementation seems to help our DS with focus.

I'd think "PANDAS."

Some abx are harder on the gut than others, that's for sure. How many units of probiotics is he getting on a daily basis? And are you spacing them apart from the abx? Even though some strains are supposed to be impervious to abx and therefore not readily killed off, spacing them apart helps ensure that the healthy bacteria sticks around in the gut for a while. Have you tried sachromycces boulardi (sach ? It's behind the pharmacist's counter in a brand name FloraStor, and you can also get generic (less expensive) versions of it at places like Whole Foods and Vitamin Shoppe (we use a Jarrow brand). Sach b is especially effective against diarrhea and was very successful for us during abx. Hang in there! If the abx are otherwise having a positive impact on your DS, I would try to stick with it an increase probiotic supplementation to help offset these gut negatives. Might also try staying away from dairy, if you can, as that might exacerbate both the nausea and the diarrhea.

Here's that other thread I mentioned: http://latitudes.org/forums/index.php?showtopic=21603&hl=probiotics

We mix strains, also, and like RenewLife Ultra Flora because of the multiple strains there. A while back, someone (LLM?) posted a thread with a web blog regarding various probiotic strains and which ones are most appropriate/helpful for certain tendencies/issues and which ones are less so, etc. As I recall, bifidus/bifido strains were supposed to be pretty positive across the board. RenewLife is heavy with those. There have been studies about the strain in Culturelle (lactobillus gg) being particularly helpful for combatting depression, but like many things, I suppose if your kid is already high or sufficient in terms of dopamine and/or serotonin, using something like this strain could help "promote" too much of a good thing. Maybe that's what you're running into, Melanie? Rachel, some doctors have steered us away from strains that contain strep bacterium (streptococcus or strepthermopolis, etc.), but I think the jury is still out, experientially, whether or not those are actually harmful. In fact, there's information on the web that suggests that these strains are particularly helpful against both ear and throat infections in kids. I think that previous thread (I'll see if I can dig it up and post a link) would be very helpful to folks trying to discern which strain(s) might be most beneficial in their individual circumstances. It's all part of one big puzzle, and really nothing "stands alone" as everything has the potential to impact everything else!

Sorry I can't add any direct experience . . . as I recall in terms of forum participants, Melanie is the only one I can specifically recall with a child who took or takes Namenda; her son, Danny, however, is I believe something of a complex case. You might try PM-ing her for some feedback. It's also my impression that use of Namenda in connection with PANDAS/PANs would be an "off-label" use of the drug, though that isn't necessarily a bad thing. Glutamate modulating therapies have proven to be helpful with a number of our kids, including my own. Our psych, however, is disinclined from using some of the newer, less-documented drugs unless those with a longer track record fail to be effective, and we've had luck with other interventions. I'll certainly be interested in your experience if you decide to try Namenda; please keep us posted!

Smarty -- As you know my DS is very strong academically, but when he was awarded his 504 Plan in 3rd grade, it was because the school OFFERED it to us, unsolicited. They had been contending with his anxiety issues (PANDAS undiagnosed at that point, but OCD was in the picture) for a couple of years and felt that he needed a defined plan for accommodations during state standardized testing. So like DCMom and SSS, it was about anxiety rather than grades. I know quite a few other high-achieving students who also have 504 plans, so I'm not sure your psych is in tune on this issue. We were told that 504 Plans are not typically subject to stringent "audits" because there is nominal funding and no additional services tied to a 504; it's only at the IEP level that significant funding and additional services become part of the picture. On the other hand, through the experiences of three other families in our same district, I'm aware that as your kid gets older, it gets harder and harder to qualify them for either 504s or IEPs; by the time you reach high school, if your kid hasn't had either plan prior, you can almost forget qualifying at that age. It seems to be because the stakes get so much higher in terms of grades, standardized test scores, etc., and everyone is very concerned about some kids getting an unfair advantage on the basis of "vociferous parents." I say, go for it!

I stand corrected! Sorry to have made the assumption, but you're right . . . if I had to hazard a guess, we're probably 10 to 1, moms to dads, here on the forum. I'm sorry you feel so alone in this, but you should know that your situation isn't all that different from many of us . . . it's just that you're the "believer" and she's the skeptic. In my house, I was the believer, and my husband was the skeptic. A man of science, a man of proof, and an "authority nut" to boot, so every time someone with a diploma on their wall said our DS had only psychiatric issues, or that PANDAS wasn't a viable diagnosis, he believed them. But, to his credit, he didn't try to stop me from doing what I felt to my core was right. I wanted him to join me in it all enthusiastically, but I could live with him just going along with me, so long as he didn't openly disparage the path in front of DS or any of the caregiver team I eventually assembled. And he didn't. He's also not a yeller by nature, which helped. Hang in there and see if you can look at her skepticism as a "balance factor" as you go forward. If her position clarifies your thinking, makes your gut more solid, then perhaps it's not all bad. Perhaps it helps keep your fire burning to find the answers for your son.

We went through something similar a few years ago, and like you, we were receiving medical treatment from other quarters, but the psych we had was flummoxed by DS's behavioral set and couldn't seem to wrap his brain around the variety of comorbid behaviors (separation anxiety, OCD, brain fog, ADHD-like attention issues, etc.) that DS was putting on his plate. When he would switch meds, and/or increase dosage, and DS's response was "uncharacteristic" based on the literature or his experience, he looked like a man who'd lost his best friend. Similar to yours, he finally told me, "I think you've moved beyond me here. I'm not sure what else I can do." Because my son's primary behavior set is OCD, I went to the IOCDF web site to find a psych that, by their listing, knew OCD. Then I called and interviewed each one who was "geographically desirable," asking them about their familiarity with PANDAS, comorbid behavior sets, etc. Eventually, we were able to find a good one, and now we've been with her for nearly 4 years. She's been with DS from fairly deep into his Giant Exacerbation, through the last couple of years during which his needs have been mild to minimal, and she continues to listen to us and adapt accordingly. Since my son was dxed with "regular OCD" at the age of 6, I've found it difficult to find good psychiatric help, even though I live in a major metropolitan area. The ones who participate in my health insurance coverage group? Forget it; you're lucky if you can get an appointment with any of them within 6 months of your first call. And the others who come "highly recommended"? Most of them have existing full clients lists and refer you to "a colleague" who in turn refers you to another colleague, and on and on. If I had time to do a career over again, I'd consider psychiatry because it seems there's definitely more demand than there is supply! Hang in there! And let your fingers do the walking. Find someone who's qualified and, if not incredibly knowledgeable about PANDAS/PANS, who's at least willing to listen, consider, read information you're able to provide, etc. I would also do what I could to be a very well-informed consumer so that you can talk intelligently with anyone you chose about treatment protocols and hopefully prevent the sort of "experimentation" we allowed our DS to go through at the hands of our first psych. Hindsight is always 20/20. Good luck!

Unfortunately, even those medical professionals "informed" of PANDAS/PANS don't understand all the ins and outs of it, and the research . . . particularly with respect to treatment protocols . . . is ongoing. Last time I heard, even those PANDAS specialists actively engaged every day in diagnosing and treating PANDAS/PANS patients do not agree on treatment protocols. Meanwhile, those of us in the trenches here have witnessed the individuality of our kids' responses to various treatment regimens, and are also first-hand observers of what can be a lengthy recovery period; my DS, for instance, took Augmentin for 2 years before we were successfully able to wean him from it without severe and dramatic behavioral back-sliding. Will the neurologist who ordered IVIG help you in an insurance appeal process? Have you seen and/or would you consider seeing one of the other prominent "PANDAS docs" who have more experience with respect to treatment and dealing with the insurance companies? I think you should follow your gut/instincts and find a doctor who will help you. Even the leading doctors and researchers in the PANDAS field (Dr. L., Dr. M., Dr. Swedo), in a panel discussion on the topic of treatment protocols, were not against long-term antibiotics on the basis of potentially encouraging antibiotic resistance; they were against it on the basis of c-diff, which can be difficult to get rid of and can cause severe problems of its own. But, at least anecdotally, it appears that most people can be protected from developing c-diff by proper use of probiotics. So, since you've seen improvement via PANDAS protocols (even if not back to "baseline"), I would continue to push for treatment while remaining vigilant and keeping a journal of your child's progress, lack of progress, behaviors, etc. Sometimes, we think our kids have ceased improving because the monumental gains they experienced at the beginning of treatment can fade over time, and the healing trajectory slows down, becomes more subtle. That's one reason why journaling can be very helpful; it can help you see, over time, what gains are still coming, as well as documenting it for caregivers. Hang in there!

Smarty -- We may be in the minority, but we did, indeed, go from an OHI 504 to an ED IEP. Admittedly, at the point at which we finally got the IEP, however, DS was in his worst state ever, and I probably would've opened up a vein and/or signed over the deed to my house to get him help at that point. So I was not overly concerned with or vigilant about the coding. The school didn't "buck" the PANDAS dx or those pieces of the IEP request; it just felt that, given the results of the testing and the behavioral issues that DS was manifesting at the time, an ED "label" was the most appropriate and best fit for incorporating the services and considerations we were seeking. I'm certain that it varies considerably from school to school, staff to staff, how either a 504 or an IEP are recognized and implemented. My general sense of it, through DS's academic experiences, is that the older the kid gets . . . and perhaps also the brighter he is (goes to classes he's in and expectations attached thereto) . . . the less likely teachers are to just automatically adapt their cirriculums or their expectations based on any dx or classification. I think some teachers get jaded over the years and are quick to judge that they're the victims of various teenage manipulations, while others might be more novice and while having a tendency toward making accommodations whether or not they're legitimized by paperwork, are reluctant to do so in the event their department heads or other supervision would take issue with it. Again, I thank my lucky stars every day that we have been extraordinarily blessed by our school districts and some particular individuals within them who have bent over backwards to help us set DS up for success. Only once did we feel even remotely "rail-roaded" by one individual with a little bit of power, and, again, some more experienced, level and politically-expedient heads at the school prevailed, had our backs, and effectively worked "around" this one individual to effectuate the great, positive outcome for DS. I suppose there's almost always one in the crowd that operates that way ("my way or the highway"), but you can probably look around the table at that point and catch the supportive glimpses of one or two who aren't buying what that person is selling either and will be in your corner. I suppose I may yet come to see some negative consequences to the "labels" we've allowed to be tied to our DS over the years, but my fears have not, to this point, been validated. I was initially afraid of a 504 because I didn't want him "labeled," didn't want teachers to whom he was assigned for the following year looking at his file and automatically and prematurely making assumptions about who DS was, what he had to contribute to their classes, etc. And those fears grew when we bumped up to the IEP; I was convinced that he would be "branded" in high school as an undesirable student in the upper level, mainstream classes for which he was intellectually suited, and that he would suffer socially from the SPED classification, too. The reality, however, has been far more positive than I ever could've dreamed. Yes, there are those peers who are heartless and gutless and get their thrills out of tormenting "quirky" boys like DS. And there is that one teacher every year who resents being asked to bend when DS genuinely needs an accommodation. But they're rare, and for every one of those, there are 10 others who rally to DS's defense, who encourage him and inspire him and join in his senses of humor and scarcasm and make him feel rewarded and wanted and valued. And they don't give a hoot if he's got a 504 or an IEP, or if it's coded ED or OHI or ABC. Can you tell I'm a sort of "ends justifies the means" thinker, especially on this topic? I don't know that there's any one right answer, but I think you're wise to solicit experiences and opinions, and I know you'll also be wise in listening to your gut and following your instincts as you survey the landscape in which you'll be seeking the help your DS needs. Good luck!

DS came home from school today with some disturbing news: one of his best friends, a boy who's known for being "quirky" in his own right but also very bright, has begun cutting himself. This boy's been walking around with an ADD diagnosis for as long as we've known him (6 or 7 years), and because of DS's journey, I've often wondered if there wasn't something else afoot, especially given as he seems to come down with strep several times each year. Ironically, his mother is a psychotherapist, and the boy has told DS he's taking several psych medications. DS is uncertain as to how he came to be found out for the cutting, but apparently he spent most of yesterday in the high school's Student Services office, and his parents have been notified. DS spent some time talking to his friend today, offering him an ear, a shoulder, and sharing some "tough times" stories of his own, with the current "happy ending." Proof positive that our kids come out the other side of this chaos compassionate and wise beyond their years. Also interestingly, DS told his friend that he understood . . . that sometimes it can feel as though "your brain is on fire, and there's nothing you can do to put it out." When DS repeated that to me, I stared at him. "Did you really say that exact thing? Is that really the way you felt? You've never expressed it that way before." To which DS replied, yes, that's exactly how it felt . . . like every neuron he had was "lit up" and burning so hot that he couldn't calm down, couldn't think, couldn't sleep, etc. I'll note that I read the book "Brain on Fire" about a year ago, and while I may have mentioned it to DS, he never expressed any particular interest, let alone read it himself.

I don't know about "flare," but if you read Susannah Calhanan's book (Brain on Fire), she discusses both 1) the long road of healing she had back to her now "normal" state, and 2) the fact that she still lives in some fear/concern that another infection could trigger the condition again. So "flare"? Maybe. I mean, she was in her 20's when this struck her, so well past the age in which an immature immune system is bombarded by constant infection and viruses in schools, sports teams, etc. Had she been younger at onset, it seems perfectly plausible that she would have been subject to infection-triggered flares of some sort, assuming she wasn't kept in a bubble.

LLM! There's also the old saw, "You can't argue with stupid!"

Smarty -- Firstly, so sorry! You know, our kids are lucky enough to get a number of great teachers, but it only takes that one to sour the entire academic experience for us and our kids. And even more frustrating is thinking that things are going along okay . . . that everyone's on the same page . . . that the communication chain is functioning as it should, and then *POW* -- out of left field comes this teacher's assertions that your DS has historically been a problem, that he is currently a problem, etc.! I can appreciate your wanting to know the details of the situation, what your DS is thought to have said and in what context, etc. But it doesn't look as though the assist. principal is going to back you up on your "right to know" those specifics, at least not readily. I think I would appeal to both the AP and the teacher (individually) to download as much of the detail of the situation to you as possible; you could phrase it as being in the interest of discussing this behavior with DS and the psych, of wanting to make sure that DS is aware of when his words/actions may be perceived as inappropriate so as to reduce the likelihood of future episodes of similar issues, etc. That being said, be prepared for the teacher to indulge in some "butt covering," i.e. "spinning" if not outright untruths, particularly if she played a role by saying or doing something inappropriate herself. And the AP may be inclined to go the same route, thinking she needs to support her staff, and besides, with your DS moving to a different teacher, what's her downside? We've had to walk this fine line a number of times . . . coaching our DS that there are always going to be some teachers who "don't get" him, who think his needs are "excuses," etc. But that he still has to advocate for himself and that if these teachers continue to throw up barriers, then he is entitled to turn to an adult (his parents, his counselor, etc.) to help him. And that, ultimately, some people are just not worth a whole lot of effort in terms of trying to convince them that you're a good person, a good student, a hard worker, etc. That there are always going to be some who remain so self-absorbed, so unenlightened, that the exercise with them becomes learning how to get around, under, over or through them so that you come out of the exchange with your dignity and integrity intact. The older DS gets, the more we see that particular skill as a crucial one, and he's learning it well. It should help him navigate not only his remaining academic years, but years in the workforce, too. You know I'm a big proponent of 504's and IEP's, as needed, and as you mention "accommodations" and "self-advocacy" in your DS's tale, I do wonder if it might not be a good thing to make some of those things official on his behalf, going forward? I mean, without the accommodations legally ratified, this teacher or any other could just tell him "tough luck," couldn't they? And the older he gets, the more likely they are to do just that. Particularly in the high school environment, we've come across some teachers who, despite an IEP, have tried to tell our DS that he either 1) doesn't really need accommodations and/or 2) shouldn't invoke the use of them because "the world isn't going to accommodate" him in the future! So it stands to reason that these teachers, absent a legal obligation to honor certain accommodations, would grant him absolute butkus without the paperwork in place! Keep in mind that, with older kids especially, the entire notion of a 504 Plan or IEP is that the kids are still expected to learn to advocate for themselves, so that skill set remains in development; the teachers don't just automatically step up and adjust their assignments to meet the allowed accommodations. But the 504/IEP enforces the teachers' obligation to grant accommodations that he self-advocates. Hopefully the psych you're speaking with is knowledgeable, compassionate and knows you, your DS and the situation fairly well? I would enlist her/his help, too, in assessing what the best next steps are. As you know, you're never going to "win" with everyone involved, but since the goal is for your DS to be happy, functional, productive and progressing, anything that achieves that end is well worth undertaking, IMHO. Hang in there, Smarty, and good luck! Let us know how it all falls out!