MomWithOCDSon

Have you talked to him about WHY he hits the dog every time he walks by it? Honestly, as someone with an OCD behavior kid at home, it almost sounds like a compulsion on his part . . . not too different from "just having" to touch the door frame on the way out of a room, or "just having" to lick his lips at a certain point in time. With my son's compulsions, he's not doing them to be naughty or because he chooses to do them; he really is compelled by the OCD response in his brain. So what if that's the case here? Having been through it before we knew the behaviors were OCD, let alone PANDAS, I can tell you that standard discipline (ala Supernanny) won't tame the compulsion; that might be the reason behind the blank stare you're getting. In order to get him to stop this behavior, it might be more productive to use something of an ERP technique . . . something like accompany him walking past the dog, if he reaches out toward it, you could say "Stop" or something to get his attention and break the compulsion's "reverie" before he actually followed through. If you did that over and over again a few times, he might be able to terminate that particular compulsion (warning: it might show up somewhere else, but at least the dog wouldn't suffer any more!). Just one idea . . . good luck!

No, I'm not sure. It did not clear my daughter though. Yes, I've heard that from some others, too . . . that Azith worked for some, Augmentin for others, Keflex for others, etc. I read somewhere that there are different strains of Strep A prevalent in different parts of the country; I guess there was a particularly virulent strain on the west coast that was resistent to many abx. Frustrating, trying to find "just the right" answer!

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth. We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor? I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow. We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin). Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect). He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery. For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby! So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!

Peg - Are you sure Augmentin will not treat intracellular strep? I was told that, because of the clauvonic (?spelling?) acd, it would go intracellular so long as in adequate dose and duration. Have I been misinformed?

Does anyone know of NAC attributing to gastro-intestinal distress at all? It may be entirely coincidental, but I've been giving my son NAC for the last week, and he's had trouble with stomach cramps, gas and bloating during the same time period. It might be a bug, but just wondered if it might be connected to the NAC since the addition of this supplement has really been the only change we've implemented recently?

My son was diagnosed with OCD at the age of 6, and he's now 12, so we've been hooked into "the OCD community" for many years now. I would urge you to look up the OCD Foundation on the web, as they have excellent materials, articles, etc. regarding OCD. You might even find there is a local "branch" of the Foundation with bodies manning the office who can answer some of your questions, direct you to professionals in your area, etc. From my own experience and the experience of others with OCD whom I've known for years, I would have to say, no, lying -- especially lying manipulatively -- is NOT a behavior generally attributable to OCD. OCD takes many forms, and performing behaviors repeatedly (rituals) or being fearful of contamination (hand-washing) are emblematic of the disorder, but by no means the only form the behaviors take. I have seen rage, but it is normally turned inward, rather than outward, because the person with OCD is distressed by the compulsions they have and frustrated by their inability to controll the compulsions, obsessions or both. I suppose there are some points of denial, as well, because they don't want the outside world to see all of their eccentricities, so they try to accommodate themselves and don't always appreciate being called out when a compulsive behavior is noticable or even intrusive when it comes to operating in the world. But most people with clinically-diagnosed OCD like my son seem to be absolutely incapable of lying in order to manipulate people or a situation; the OCD itself prevents telling or perpetuating a falsehood. Many, in fact, are what we call "compulsively confessional," relaying slights or unkindnesses, real or imagined, and feeling tremendous guilt over them. I'm sorry to say, your daughter's situation sounds as though it is born of something else.

bmom and P.mom -- Has Dr. K. given you his reasoning for ceasing the abx and what he would propose should there be regression by the kids once off the abx? Off-hand, I would think that wasn't a wise move, either, and it seems to run counter to what other well-known doctors in the field (Dr. L. and Dr. T.) typically recommend under the same or similar circumstances. So why the discrepant protocol? Anyone else with experience with Dr. K. have a similar experience and can share his reasoning? I'll admit I have a particular motive here; we're considering seeing a more specifically PANDAS-oriented doctor, and Dr. K. is, as one might say, more "geographically desirable" than most of the other PANDAS doctors noted/recommended on this forum. I have heard and read, however, that Dr. K. is very IVIG-leaning, which as one treatment option appears to be appropriate; however, if he prefers frequent or repeated IVIG to other potentially viable methods (and much less expensive ones, at that), then it might be cause for reconsideration on our part. Thanks!

Did you ask Dr. K. "What next?" if your son's troubles return in spades entirely off the abx? Do you think Dr. K. might be looking at another IVIG if that should happen?

There was a previous thread (someone posted pictures of their kids and another parent jokingly remarked what lovely, SMALL pupils they had! ), that this issue was taking up. One school of thought, I guess, is that the "fight or flight" anxiety that accompanies PANDAS in many cases contributes to these enlarged pupils. My son's pupils, unfortunately, can take your son's pupils in a current contest! Ever since that previous thread a week or so ago, I've made it a point of taking a look into my son's eyes, not just when he gets up but at various points throughout the day. His pupils are ALWAYS dialated, and I mean ALWAYS! Some times they are larger than others, but they're never the nice, beady eye centers that we generally expect them to be!

Yes, VERY interesting! We just downloaded it, and my husband and I are perusing it concurrently. I have an electronic version of it in my possession now, but given copywright restrictions, etc., I don't think I can post a link or provide it here, but if anyone wants a copy, PM me and I will gladly share it! Thanks, Faith!

Thanks, Faith. Actually, my husband subscribed to Scientific American, so I should be able to dig up that article on my end. In fact, I vaguely remember him mentioning something about a similar topic maybe a month or so ago, when he was reading? Didn't connect it at the time with what we were going through, however. I'll take a look!

Hey Faith -- Like you, I'd give my eye teeth for some more "absolutes" so that I'd know for sure I'm doing as many right things as possible to help my son. Here's what I would say to your primary questions above, and they are definitely colored by some recent posts on this forum and some recent first-hand experience. 1) Could the sore throat be caused by drainage from his sinuses? I know my son frequently complains about a sore throat, especially in the morning, and its usually due to some post-nasal drip he's had going, especially during the night while he's asleep. 2) My son never tested positive for strep, either; however, the ASO titer blood test we gave him revealed a titer count more than double the "normal" range, so he had definitely been exposed, even though he was, excluding potential PANDAS, asymptomatic. So was Sammy Maloney. Coincidentially, I've had one doctor tell me that strep likes "hide out" in the sinuses, which sort of brings us back around to question No. 1 in a way. 3) I think most of the finger-pointing is at strep because neurological, auto-immune issues are relatively new in the medical field, but strep happens to be the "poster-child" infectious agent that's actually been studied, at least to some degree. If the issue is inflammation of the basal ganglia, it wouldn't necessarily have to be strep, or the antibodies' reaction to strep alone, that might cause the inflammation, right? I wonder about abx in all cases, also; I think a lot of us go there because it's what we know, it has something of a track record amongs much of the population, and, as compared to IVIG, PEX or maybe even steroids, abx are "easier" to obtain, even from physicians who aren't entirely on board with PANDAS or the auto-immune neuropsychiatric relationship. My son is now off of the abx, also. We'd had him on for more than 2 weeks consistently, and had tried a previous 3 week course just prior, with a small break in between to try and assess whether or not the abx was actually doing anything for him. I'm thinking, if he regresses again, we'll head for some steroids and see what the result is. I do wish, however, it felt like something more than "experimenting" with my own kid, though! Heck, I won't even buy cosmetics that are "animal tested," so much of this absolutely goes against the grain!

Our son has always had nasal/respiratory issues, attributed to various seasonal and standard (dust, mold) allergies. Now you're making me wonder, though. Maybe we should have his sinuses checked out?

We have tried both Augmentin and Augmentin XR. My understanding is that the XR version comes in a slightly higher dosage (maxes out in 1,000 mg. tablets, whereas regular Augmentin maxes out in 875 mg. tablets) because it is "time release" and therefore doesn't all hit the stomach at once. The main difference we saw with our son was that the XR was easier on his digestive tract; the non-time release seems to be tougher on his gut, and therefore tougher for him to manage, along with everything else (OCD thoughts and behaviors) he struggles with. On both the regular Augmentin and the XR we saw almost miraculous relief of some of the OCD behaviors within the first 3 days, followed by a plateauing of visible improvement, and then even a regression of some of the more "common" OCD behaviors as they've always related to our son, namely contamination fears. That being said, however, on both of those options, what has noticably declined and remained consistently in decline during the abx course are the full-out emotional meltdowns. He will still have one occassionally but not over every little thing (as he did pre-abx), and the meltdowns he now has tend to be much shorter-lived and less hysterical overall. So I take that as a sign that, even though some of the contamination stuff has crept back in, his overall stability and health continues to improve.

Wow, you guys have really been through the ringer! I'm so sorry! Please be prepared to lobby hard for some long-term antibiotics. Thus far, I've not heard of a 10-day course helping anyone with PANDAS for more than the 10 days they're on them, and possibly a day or two beyond that. You know what Sammy Maloney went through . . . ultimately, he was on heavy dose antibiotics for over a year, as have been many other kids on this forum. Also keep in mind that a standard strep test (throat culture) may come back negative now, after that 10-day course, but that doesn't necessarily mean your son is "cleared" of the strep. As long as he's been suffering these behaviors, it may be that the strep has gone "intracellular" and is hiding in other places throughout his body. One of our doctors has told us that strep can tend to hide out in the sinuses, which sounds somewhat consistent with what you've experienced thus far. My son was actually entirely asymptomatic (like Sammy Maloney), so none of his throat cultures ever came back positive for strep; rather, it was an ASO titer blood test (recommended by Beth Maloney) that demonstrated that he had, indeed, had a recent strep exposure and that he had more that twice the antibody level of a "normal," non-strep-infected person. There are many, many posts here with scholarly papers and articles, experiential advice, etc. that you could gather and take with you to your next ped visit. You may want to request various blood tests, a steriod burst trial, etc. to better illuminate the fact that your son is PANDAS and struggling with infection and an auto-immune response. Ultimately, if your doc won't at the least give you the benefit of the doubt and allow a trial of longer term abx, then there's a list of several doctors on this site who will help you; many of them will do phone consults, too, if traveling is out of the question. Good luck! Don't take "no" for an answer until you're certain yourself that "no" is the correct answer!

Yes, that IS an excellent book. I have to admit, it makes me feel a little ironic, personally. I've been shopping only organic, hormone-free meat and dairy for the last several years, but now I'm giving abx to my son daily . . . and in high doses! If we just stuck with meat provided by these "factory farms," maybe we could forego the freestanding abxa and just "protein dose" 3 times daily, minimum of 6 oz. per meal?!

Welcome! There are many parents of teens here on the forum; mine is almost there (12), and because I was originally under the impression that PANDAS was a condition relegated soley to pre-pubescence, I wasn't sure what applied to the younger kids would apply to mine, but it DOES! And I think you'll find it does to yours, as well. There are even a couple of adults here who are pursuing PANDAS treatment. The entire idea is that, though it may have gone "under the radar" or entirely unremarkable by you or your daughter for some years previous to the seizure, there was likely a childhood onset of a reaction to the strep or other bacteria that set the stage for what would typically be called this current "exacerbation." My son, for one, was always entirely asymptomatic for strep so we didn't even know he'd had it until we had blood tests run! So much information here! It can be time-consuming, but once you dive in, you'll find a lot of ideas and assistance. You're very fortunate to have a doctor who's identified it so readily.

Good idea, will do. Lately, though, we haven't been especially regular with the multivitamin for him. His tummy has been giving him a lot of trouble on this latest course of abx, despite all the probiotics, etc., so I've been trying to trim back a bit and see if that helps him along at all.

Good question. For the moment my answer is, "No, not yet." Our son is still on an actual SSRI, Luvox, basically a pharmaceutical "hangover" from those days before we turned to PANDAS and thought what we were dealing with was just pure OCD. So if there's any chance that inositol actually behaves in the brain like a synthetic SSRI, I don't want to combine the two and risk Serotonin Syndrome. I've been thinking about tapering down on the synthetic SSRI anyway, though, as 1) though it doesn't seem to be harming him, I'm not convinced it's actually helping either, and 2) the Murphy study and so many of the experiential responses here on this board tend to suggest the SSRI's might actually be contributing to some of his trouble, whether we know it or not.

This is AWESOME information; thank you so much! Yes, I did read an article on the web referring to inositol's "ammune enhancing" qualities; I will try to find that again and post it for you and others. Additionally, the labeling on the bottle of inositol I purchased at the Vitamin Shoppe boasts "Deep Immune Health," "Boosts natural killer-cell activity," and "Boosts the body's natural defenses." So, between the web, the labeling and some posts here, that's what I thought the supplement was for. I know what you mean about sources; definitely something to keep an eye on, I know. But there's such a plethora of stuff out there, and I'm no scientist or medical professional, so it's hard to know what to trust! That's why I reached out here, because I figured someone would have some answers . . . hopefully both clinical and experiential! Thanks again!

I first heard of PANDAS about ten years ago on the internet. Unfortunately out docs would not pursue it even though I sent them articles. Ditto!

Geez! As of right now, more than 50 "views" of this topic and no responses! I was hoping for some "ammunition" for my scientifically-minded, cynical-but-willing-to-try-for-our-son's-sake husband! Plus, at the root of this is a decision we need to make, whether or not to add this supplement to our son's regimen. Any ideas or thoughts some of you more experienced parents/scientists/doctors might have will be very much appreciated! Thanks!

Hang in there, Tattoomom! No matter how good and supportive the husband, that Y chromosome just isn't a sufficient exchange for Maternal Instinct! I have a slightly different problem. My husband is supportive . . . I think more or less because he knows with or without him, I'm taking my son down this path, and he'd be better to get on board rather than get run over! But . . . He's of a very scientific mind, so when studies aren't repeatable and/or conclusions are drawn with hypotheses included rather than 100% hard evidence, he puts on his cynical hat. Furthermore, he's a bit of an "Authority Hound," so when a doctor with advanced degrees and years of experience puts forth his/her opinion, my husband tends to accept it, no questions, no second opinions, etc. I guess it's just up to us "goddesses" to keep the faith and keep on asking questions, trying alternatives, etc. My apologies, meanwhile, to Buster, WorriedDad, MichaelTampa, Alex and any of you other atypically enlightened men here on the forum who have quite obviously learned to adapt around/compensate for that pesky Y chromosome when it comes to the issue at hand!

I've seen a number of posts here referring a supplement called Inositol, which is supposed to assist in creating/maintaining a healthy immune system. I suppose the idea is that if we help our PANDAS kids develop better/stronger immune systems against the agents that exacerbate the PANDAS, then they'll have a better chance of fending off the "bad" stuff without abx, IVIG or PEX interventions? So, I went out and bought some inositol, with every intention of beginning to dose my son with it. That is, until my husband pointed out something I'd failed to consider up til that point. It seems, at least what my decidedly non-scientific brain can gather from all the posts and various research documents posted by Buster and others, that at lease SOME of what PANDAS may be attributable to is an increase in certain antigens/antibodies which, rather than attacking the actually offending bacteria such as strep, wind up attacking the basal ganglia tissue instead. So, in this case, the immune system is "misinformed," if you will and harming itself rather than helping itself. So, if a PANDAS person ingests some "immune helper" like inositol, how do we know that this supplement boosts only the GOOD, non-offending components of the immune system and not, equally, those confused antibodies currently attacking tissue we want them to leave alone?!

Melissa -- Yes, your story is VERY familiar! We're just a couple of months away from teenage-land ourselves, but our son was first diagnosed with OCD at the age of 6. Similar to you, I raised the possibility of PANDAS then, and our doctors waived it off, as well. So we went for years on therapy and SSRIs, treating the behaviors but not ever actually getting at the root of the issue. My son has never actively had strep, either; he was always entirely asymptomatic, but within days of him coming home from school with a note regarding another kid in his class having been identified as having strep, he would be find but I would wind up with strep throat! I'd take him to have a throat culture, and it always came back negative. So I sort of gave up on the whole PANDAS thing after a year or so. That was until I stumbled across "Saving Sammy." Since Sammy's strep was asymptomatic, also, and his doctors went the ASO titer blood test route, finally, this summer, we did the same thing. Most experienced PANDAS folks don't see that ASO titer test as a definitive affirmation of PANDAS, but it was sufficient to bring our existing pediatrician on board to get a long-term antibiotics prescription. Seeing Dr. Latimer should be of great help to you, I would think. I don't think anyone experienced with PANDAS would blink twice at teenage patients, especially when the medical records can confirm instances of earlier exposures and/or exacerbations that merely went undetected as PANDAS. As for the treatment for teenagers, I've been wondering the same thing. Because my son went almost 6 years without PANDAS treatment, is it too late for him? Has his brain been permanently modified by all that's gone on in the ensuing years? If he is treatable, will it take longer and/or stronger doses than it would have if we'd caught it at a younger age? Beth Maloney (Sammy's mom and the book's author) has encouraged me to hang in there, that because Sammy was 12 before his PANDAS was identified and he was "successfully" treated at 13 and 14, then my almost 13 y.o. should fare well with treatment, also. Crossed fingers for all of us!