MomWithOCDSon

Our DS14's IEP is built around Otherwise Health Impaired (OHI). While the school has been informed of PANDAS and is accepting of it, the IEP is actually designed around the behaviors brought to bear by the PANDAS, rather than PANDAS itself. Our DS's primary behavior set is OCD, so most of the accommodations, interventions, etc. would be "classic" for addressing that condition. He also has a few that help contend with the autistic-like processing and behaviors that come into play during an exacerbation, such as keyboarding instead of handwriting for assignments, oral quizzes rather than written ones, and social work sessions for working on interpersonal skills with his peers. The only really PANDAS-like pieces of the IEP is that each of the accommodations and/or interventions are identified to be utilized/applied "as needed," so when he's not in an exacerbatory period, no one is insistent that they continue to be applied. Also, the school nurse gives me a call when she's aware that there is "strep in the building," though the older he gets, the less the schools tend to be informed of kids having come down with it. If you're interested in more the particulars, such as what exact accommodations were we able to arrange, let me know.

What a wonderful thing, this world wide web! One link leads to another link, which leads to another link . . . . . And now I came across this! I had no idea something like this even existed, but it certainly seems as though it would provide much of interest to many of us. I've only begun to poke around myself. Journal of Neuroinflammation

I received a couple of fresh Google alerts regarding glutamate today. One research note led me to a web page from Johns Hopkins University, at which Dr. Jeffrey Rothstein appears to focus on glutamate and modulation of glutamate as a potential treatment protocol for various neuro issues. For those of us who have found that ongoing antibiotics seem to assist our kids above and beyond the prophylactic impacts: Antibiotics Protect Nerves in Mice by Turning on Genes A family of antibiotics that includes penicillin may help prevent nerve damage and death in a wide variety of neurological diseases, including Lou Gehrig's disease, dementia, stroke and epilepsy, Johns Hopkins researchers have found. The antibiotics' beneficial effects, discovered in experiments in the lab and with mice, are unrelated to their ability to kill bacteria, the researchers report in the Jan. 6 issue of Nature. Instead, the drugs squelch the dangerous side of a brain chemical called glutamate by turning on at least one gene, thereby increasing the number of "highways," or transporters, that remove glutamate from nerves. "It would be extremely premature for patients to ask for or take antibiotics on their own," said the study's leader, Jeffrey Rothstein, director of the Robert Packard Center for ALS Research at Johns Hopkins and a professor of neurology and of neuroscience in the School of Medicine. "Only a clinical trial can prove whether one of these antibiotics can help and is safe if taken for a long time." In mice engineered to develop the equivalent of Lou Gehrig's disease, daily injections of an antibiotic called ceftriaxone, started just as symptoms tend to surface, delayed both nerve damage and symptoms and extended survival by 10 days compared to untreated animals. Lou Gehrig's disease, or amyotrophic lateral sclerosis, in people causes progressive weakness and paralysis and ends in death, usually within three to five years of diagnosis. "We're very excited by these drugs' abilities," Rothstein said. "They show for the first time that drugs, not just genetic engineering, can increase numbers of specific transporters in brain cells. Because we study ALS, we tested the drugs in a mouse model of that disease, but this is much bigger than ALS. This approach has potential applications in numerous neurologic and psychiatric conditions that arise from abnormal control of glutamate." A large multicenter clinical trial planned for the spring will help determine the best dose of and schedule for ceftriaxone in people with ALS and will measure whether the known risks of long-term antibiotic treatment are worth it, he said. The drug is currently approved by the U.S. Food and Drug Administration and is used to treat bacterial infections in the brain. More than a dozen of penicillin's relatives, known as beta-lactam antibiotics, were among protective agents identified by a National Institutes of Health-funded project to screen 1,040 FDA-approved drugs for new uses. The newfound ability of these antibiotics to activate glutamate transporters and to protect nerves and the drugs' potential therapeutic use in neurological conditions is covered by patent applications held by Rothstein and Johns Hopkins and licensed to Ruxton Pharmaceuticals. Of the antibiotics, penicillin protected nerve cells best in laboratory dishes, but ceftriaxone had the best results in mice, probably because it more easily crosses into the brain from the blood, the researchers report. Rothstein and his colleagues determined that the antibiotics' benefit stems from their newly recognized effect on glutamate's Jekyll-and-Hyde effects. In the brain, glutamate normally excites nerves so that electrical signals can travel from one to the next. But too much of the chemical can overstimulate and kill nerves, a factor in ALS and some other diseases. In a series of experiments, the researchers discovered that the antibiotics activate the gene encoding glutamate's main transporter in brain cells. Rats and mice that received daily ceftriaxone for up to a week had triple the usual amount of the transporter, known as GLT1, in their brain cells, an effect that lasted for up to three months after treatment. "Glutamate is just one of many messengers brain cells use to communicate with one another, and this is just one of the transporters that move glutamate," Rothstein said. "So if you can find the right drug, you might be able to specifically affect other transporters, too." Because ceftriaxone only protects against glutamate damage, just one problem in ALS, it's not surprising that the mice eventually succumbed to weakness and paralysis despite treatment, he said. "If we can find drugs that protect against other causes of nerve death in ALS, the combination might offer a real therapy, much like using drug combinations to treat cancer," Rothstein said. "The more we know about ALS and other neurological diseases, the better our chances of finding ways to prevent nerve death by all causes." The research was funded by the National Institute of Neurological Disorders and Stroke, the Muscular Dystrophy Association and the Robert Packard Center for ALS Research at Johns Hopkins. The ALS mice were provided by Project ALS. Authors of the paper are Rothstein, Sarubhai Patel, Melissa Regan, Christine Haenggeli, Yanhua Huang, Dwight Bergles, Lin Jin, Margaret Dykes Hoberg, Svetlana Vidensky, Dorothy Chung and Shuy Vang Toan, all of Johns Hopkins; Lucie Bruijn, of the ALS Association; and Zao-zhong Su, Pankaj Gupta and Paul Fisher, all of Columbia University Medical Center. Under a licensing agreement between Ruxton Pharmaceuticals and The Johns Hopkins University, Rothstein is entitled to a share of royalty received by the university on sales of products described in this study. Rothstein and the university own Ruxton Pharmaceuticals stock, which is subject to certain restrictions under university policy. Rothstein is a paid consultant to Ruxton Pharmaceuticals. The terms of these arrangements are being managed by The Johns Hopkins University in accordance with its conflict-of-interest policies. And here's another link to a full paper regarding some more glutamate research: Glutamate Transporters: Animal Models to Neurologic Disease

Thanks, everybody! I will pass your well-wishes on to DS! He's practically glowing after the graduation ceremony rehearsal this morning and some big "atta-boy"'s from his favorite teachers. A few more pats on the back should set his self-esteem on "full" and help him contend with whatever nerves tonight's "real thing" might bring!

FWIW, I don't want to speak for Swedo, and since research and perceptions tend to evolve, her studied opinion may have altered in the last 12 months or so. But at last year's AutismOne conference, Swedo mentioned that she felt that plasmapheresis was the treatment of choice for PANDAS but that the community at large was inclined to be less accepting of that because it was an inpatient procedure, more costly and perceived by some to be more invasive; she mentioned some limitations brought to bear by typical insurance coverage, as well. So she was ready to investigate IVIG as a more conventionally-accepted alternative, I think largely based on Dr. K's reported track record of success.

Check the pinned threads at the top of this PANDAS forum. Among other things, there is a list of doctors who've helped many of us. Kimballout and DCMom have pretty much said it all. In order to best help your son, you'll probably want to become a virtual "PANDAS expert" yourself, since the definition of the illness and the treatment protocols are still in development and there is not 100% concensus about either, even among the "PANDAS docs" that have contributed to our kids' care and research. Parenting through this is part gut, part intellect, and all heart. But this forum is a great place to start because there are many, many experienced, intelligent, caring folks here who have just about seen and done it all, collectively. In addition to checking the pinned threads, you might conduct a search for prime topics of your choice, like "IVIG," "tics," etc. and then read through a few threads on those topics of most interest to you. Sometimes there's a nugget of wisdom buried in there by someone who doesn't come into the forum so much anymore, but it resonates with you and your situation nonetheless and is of particular help. Good luck to you!

Well, today is my DS14's last day of junior high school, and his 8th grade graduation ceremony is tonight. We're so proud of him and he's been through so much during his junior high career that tonight is a major milestone. Just as a recap, his first major PANDAS episode occurred the spring of his 6th grade year, and we spent the better part of 7th grade trying to recover and get a grip on what we were dealing with. After nearly 7 years of a "purely OCD" diagnosis and treatment protocol, those interventions failed us big time in the face of DS's decline in May of that year, and it wasn't until we found PANDAS and started abx in October of the following fall that we began to see real recovery. We've had our ups and downs ever since then, but given DS's entry into pubescence, the increasing academic demands of school, the increasing social demands of contending with his OCD/anxiety when among his peers, etc., overall, I think he's has done really well. After having to be homeschooled for several months of his 7th grade year and going to school only part-time for another chunk of that grade, he's been in school the entirety of this 8th grade year, pulled straight A's, and even managed to have some fun along the way. He began another pretty powerful exacerbation this past February, after a strep-filled winter season, and we only began to see him regain some ground again as of this past late April. He continues to gain, and we're cautiously optimistic now. The work, therapy, meds and supplements continue! DS came home with his yearbook yesterday in which he was named by his class as both "Most Likely to Cure a Major Disease" and "Most Likely to Become An Activist," and I just found out last night that he was asked to give his class's commencement speech tonight, but he passed on that opportunity; he said that he's afraid he might become overwhelmed and then have trouble following through, and he thought they should select someone "more reliable" for that honor. I would've been SO proud to see him give that speech tonight, but I'm equally proud that he knows himself that well and is willing to be so honest about his own challenges and put his classmates ahead of himself in his consideration. I'm one proud Mama! Thanks for all your help these last two years, and for letting me brag a bit today! All our kids deserve a good, loud, joyful celebration now and again! Here's wishing everyone a peaceful, happy summer!

Here's a link to another clinical trial with NAC at Yale; this one is specifically related to OCD. There's a dosage protocol here for that age group. Yale OCD/NAC Trial

So sorry, Eileen! What insanity! How can NJ conduct itself so differently from other states in this regard? Perhaps there's a state advocacy group that could point you to some successful means? Or can you get a list of what the AAP asserts are justifiable exemptions for vaccines and get a doctor to confirm one of those conditions/diagnoses? Sorry I don't have any more concrete ideas; we're not in your area, and I wasn't "with it" enough to refuse vaccines for my DS when he was your daughter's age. Here's good thoughts and light coming your way for this situation and your daughter's overall health. Hang in there!

Nope. Some kids, like my DS, have the OCD and separation anxiety components, but no tics.

Maria - My PANDAS DS is also 14, and he's been on 2,000 mg. of Augmentin XR almost constantly for the last 2 years; we've occasionally tried stepping the dosage down, but the longest he's ever been off entirely was 2 weeks. Anyway, we don't seem to have any yeast problems. I credit a couple of interventions for that. Firstly, he gets saccharomyces boulardii ("sach b" or "s boulardii") daily; this is a probiotic that is a "good yeast" which basically populates the gut and makes it less hospitable for the overgrowth of "bad yeast" like candida. He also gets quite a few other probiotics that help repopulate his gut with good organisms. The second thing, which takes care of any die-off, is bentonite clay. Sometime we use it only a couple of times per week, sometimes we use it less than that. But it can be mixed in juice and helps sweep the die-off out of the gut.

I've missed that one somehow, so I'm very grateful to you for posting! Jenike pulls a lot of weight with our psych.

I think you've already seen my post about the NAC regimen my DS is currently on (http://www.latitudes.org/forums/index.php?showtopic=13723). But additionally, FWIW, my DS is also taking zoloft, and there is no problem combining the two. In fact, his psych recommends it. No side effects that we've seen, either. Good luck!

My DS had an Aspberger/PDD diagnosis, but it was always secondary to his OCD diagnosis. When standard treatments for the OCD (ERP therapy, SSRIs) failed to make a dent in his OCD, we found PANDAS, got the ASO and AntiDnase-B blood tests (he was asymptomatic for strep and never had a positive culture), found that his titers were exceedingly high, and began antibiotics. The crazy thing was that not only did his OCD recede with antibiotic treatment, but so did his Aspberger/PDD behaviors. I think you'll know. If your child responds to PANDAS treatment, it will set a new bar for behavior.

We began a low dose of lamictal for our PANDAS DS14 on April 22nd and saw positive results within about 48 hours; he was definitely calmer, less anxious and even less OCD. We've kept him on a low dose since then, and he continues to improve, almost daily. That being said, if he were around the corner from IVIG, I would have similar concerns to yours. If you really sense that you're that close, would your doctor think appropriate and prescribe perhaps another anxiety/rage reducing med that would both work quicker and not require the ramp-down for withdrawal of lamictal? Maybe something like Seroquel or risperadol? Full disclosure: in the last 2 years of PANDAS, we've tried just about everything out there, including the "heavy hammers" like Seroquel, risperadol and zyprexa. I couldn't recommend them on a long-term basis because there's a side-effect profile that worries me, and for our DS, they did nothing at low doses and at higher doses just made him sonambulent and ravenous. That being said, I know they've been life-savers for some on a short-term basis, especially for quelling anxiety and/or rages, so maybe something like that would fit better in this interim before IVIG? Good luck to you with your approval!

Thanks, LLM. Definitely interested and will read this tome before turning in tonight! I'm not sure how much this article goes into "pulsing abx," but I'd be interested in experiential information in addition, anyway. What do you mean, really, by "pulsing abx"? What kind of intervals and doses are we talking about?

I'm thinking Huperzine might be esp. good for PANDAS kids since many have memory/learning issues in addition to OCD. EAMom -- Please be sure to post as you try this supplement. I, like many others I think, would love to go with "supplements" as opposed to "meds," if only they proved to have equal efficacy. So very interested in your experience and response here. So, Huperzine is not commonly available in health food stores, Whole Paycheck or vitamin stores? Or you've ordered it because you are after especially high-quality stuff?

I'm a slow learner, too! It's just that this glutamate stuff has piqued my interest for quite a while now, so I'm always keying in on it. I'm so obsessed, I actually have a Google Alerts set up for it! Anyway . . . potentially, it seems. Meaning they're still studying NAC for its efficacy and method of activation, but it is currently thought to somehow either 1) modulate NMDA glutamate receptors or 2) increase levels of glutathione in the brain. Since it's an amino acid and a precursor to glutathione, Option 2 seems feasible. Experientially, though, while I believe NAC has helped our DS with his OCD, it's had nowhere near the "punch" of the lamictal in that regard. So, on that basis alone (and I'm no scientist), I'm leaning toward thinking that the NAC increases glutathione levels which is overall helpful because it reduces oxidative stress to the cells in the brain and can thereby assist to some degree in the modulation of glutamate along with other protective actions in the cells, but the lamictal is more "focused" and actually mitigates the impact of existing glutamate in the brain by having more or less one job to do: blocking sodium channels. Again, just my layman's read of material I've been able to find, along with our actual experience with both NAC and lamictal.

Regarding inositol and choline together . . . I, too, see a lot of the combined supplements offered for sale, but nearly all of the literature available on line regarding the two is provided by the supplement companies themselves, and they range from vitamin dealers to weight loss enterprises and body-building programs. Following is one of the few links I could find that opines experientially on the use of inositol and/or choline, specifically for OCD. It still isn't exactly "scholarly" and I don't know this group that's published these opinions, but pieces of it are interesting to me, anyway. Alternative Medicine for OCD A couple of statements here stand out to me: "My clinic has used inositol with thousands of patients & learned the following: A. Inositol is usually very helpful for UNDERMETHYLATED, HIGH HISTAMINE patients. This includes nearly every OCD patient we have seen. Inositol usually provides calming throughout the day and ability to settle down to sleep at night, for these patients. B. On the other hand, OVERMETHYLATED patients usually derive little or no benefit from Inositol, and may experience very nasty side effects from it." Also, for what it's worth: "Most OCD patients (both obsessive thoughts AND compulsive actions) exhibit undermethylation and associated low levels of serotonin, dopamine, and norepinephrine. Choline is anti-dopaminergic and often makes OCD patients worse. Generally, OCD patients respond nicely to methonine, SAMe, calcium, magnesium, B-6, Inositol, TMG, and zinc. Most OCD patients get worse if given supplements of DMAE, choline, copper, or folic acid." It seems as though, not unlike nearly everything else in PANDAS, what helps one won't necessary help another. Or then again, it might!

Scary! That sounds like a brush with Stevens-Johnson Syndrome! Yes, then, it seems like namenda is your answer. As I understand it, if you have the Stevens-Johnson "allergic" type of reaction, then you have to discontinue the offending med immediately and basically not return to it. Glad the low-dose namenda seems to be working for Danny!

They appear to have similar attributes and result in some similar behavioral impacts because they both help modulate glutamate in the brain. As best as I can make out, though, they have different action profiles. Namenda (or memantine) actually blocks glutamate receptors so, theoretically, however much glutamate is floating around and available, the receptors remain oblivious to it in part, and that results in fewer "excitatory behaviors" that occur when more glutamate is being taken up by the receptors. Meanwhile, riluzole seems to have a less direct activation as its primary methodology is to block sodium channels which in turn inhibits the release of calcium ions; the calcium ions are what appear to stimulate glutamate receptors, making them more sensitive to the glutamate available in the brain. A key difference seems to be that namenda has actually been found to bind to NMDA glutamate receptors while, thus far, there's no evidence that riluzole actually binds to any receptors. I guess in the end, as lamictal is also thought to block sodium channels, its form of activation is more similar to riluzole than to namenda.

NAC is another supplement that's best to start low, mostly because it can have gastro-intestinal consequences (gas) if you go at it too hard and fast, I think. We started out at 600 mg. per day (one capsule in the morning), and increased it at first to 1,200 mg. by adding another capsule in the evening. Then we ramped it up by another capsule in each of the morning and evening until he was taking 2,400 mg. total. Finally, after reading about a Yale/NIMH study for adults with NAC and seeing their dosages, we took it up another 600 mg. to where he's currently at: 3,000 mg. per day (at about 125 pounds when we began the NAC, and 140 pounds now, our DS is basically adult-sized). Here's a link to that study's parameters: Yale/NIMH NAC Trial for Adults Searching again just now for THAT link, I found the following one which provides parameters for a current study involving kids, OCD and NAC. I'm not sure if, in looking at it, the dosages they're using now for kids are actually lower or higher, in total, than what they used for the adult study (it's written a little confusing; maybe a call to Yale would clarify): Yale Kids OCD and NAC Study Here's another link to one of the most complete papers I've seen regarding OCD and glutamatergic dysfunction; it talks about NAC and riluzole as possible treatment options: Glutamatergic Dysfunction in OCD Finally, I should say that it's been recommended that, when taking NAC, you increase the amount of Vitamin C alongside it; the Vitamin C, I guess, helps counter any potential oxidative stress from the NAC. So we've increased DS's QBC (quercitin, bromelaine, Vitamin C combo) supplementation along with the increases in NAC. Here's a link to some information in that regard. NAC and Vitamin C Sorry to hijack an inositol thread!

Well, I'm very glad that she's recovered from it, and I hope the other issues resolve as best they can, as well. A part of me knows full well that, in using some of the medications we're driven to try, we're potentially "dancing with the devil" as so many of the side effects and long-term ramifications aren't well-identified or documented for years. In the end, I guess the best we can do is weigh the pros and cons and make the best, most informed decisions possible. Thanks for sharing your experiences; it gives one more food for thought.

We've had good success with Culturelle ourselves, and we like it because it's one of the probiotic organisms (lactobillus GG) that isn't readily killed off by antibiotics, so you can dose the abx and Culturelle concurrently, or at least not fret over the spacing out of the two, so much as you do a culture like acidolpholus. Another one we really like is "sach b" or saccharomyces boulardii, to use the long name. We get the Jarrow brand at our local Vitamin Shoppe at a very reasonable price. This is another one that is impervious to abx and is actually a "good yeast" that helps crowd out any potential bad yeast overgrowth as the result of abx. And it's been found to be effective in reducing cases of diarrhea, too.

Peg -- So sorry about that reaction and, frankly, a little alarmed by it. What is the prognosis? Does it/did it clear over time? Was there a treatment for the reaction, in particular? I can only find reference to a "lupus-like reaction" in the literature, and this is noted as being a "post marketing experience," i.e. independently and voluntarily reported, without any studies duplicating it. So just wondering how you're dealing with it?