MomWithOCDSon

I think Michiganpandas has a great idea! Do they, by any chance, offer any fun summer school programs or camps at the junior high or on its grounds? That's how we integrated DS into both his junior high and high school facilities, plus gave him a chance to meet some of his teachers in advance. We signed him up for some fun, short-term summer programs in both schools so that when that first day of school rolled around, he could walk into the building with more confidence, and even see a familiar face or two among the adults. I know her school phobia probably makes both of you reluctant to add any "school activities" to your summer, but in the end, it might be worth the effort since it should make returning to the actual school year much easier.

Oh yes! We have been there SO many times! Camp counselors, teachers, doctors, dentists -- all of them emphasizing the importance of good hygiene without a clue that DS would turn this into a Gospel of Soap and Toothpaste! For quite some time, he tended to react similarly to classroom instructions regarding assignment deadlines, warnings regarding cheating (looking at someone else's paper), etc. Anything that came out of the mouth of an authority figure was Gospel! Aarrgghh!! Again, we just coached his powers of discrimination and constantly challenged the status quo . . . had him do some "reality testing" and gut checking. And there were times, also, when we would just come out and say, "You know things like that are said for the benefit of the average kid, and you're not average!"

Smarty -- I find this is one of the hardest issues DH and I face: pushing DS to move outside his comfort zone and thus not allow any anxieties to hold him back, while at the same time reinforcing (but not putting a barbed wire fence around) the values, morals and basic self-protections he needs in the face of various peer pressures. In our case, thus far anyway, I've been called upon to do more of the pushing than pulling back. DS is prone toward always striving to do the "right" thing, and since he's been in school he's been inundated with "Say No to Drugs" campaigns and assemblies, safe sex education in junior high, and safe driving, etc. in high school. And, quite honestly, these programs/syllabi seem to be designed for "the lowest common denominator." The language in the materials and used by the instructors, in our experience, have been so pedantic, so narrow, so inflexible, with frequent use of the words "never" and "don't" -- trying to get through the thickest skulls among them, I suppose. So the harsh, take-no-prisoners ideas about all of these potential "evils" were put on the table by teachers and strangers, and then it became our job to reel DS back in to the real world. He became so wound up about personal safety on the heels of a health class in junior high, in fact, that I had to "go rogue" on him and deliberately "break the rules" to loosen him up a bit! He once wanted to call the cops to take him home, rather than get in the car with DH and me, after a dinner out at which DH and I each consumed 1 cocktail over a 4-hour period! During that same time period, he was prone to backseat driving that would drive one insane, watching our speed, our turns, our signaling, like a hawk! I actually kicked him out of the car one time and made him walk the last 3 blocks home, I'd so had enough! Some of my friends call me the "anti-mom" because I'm heck-bent on modeling some provocative behavior/language for DS -- in a safe way and safe environment -- so he doesn't want to curl into the fetal position when he encounters it out in the world! I don't want him to be socially stigmatized or ostracized for being such a "straight arrow" or a "goody-2-shoes," so while it's fine (and applauded) by me if he never swears in public, I also don't want him turning up his nose at people who do or making snap judgments about someone because they said H-E-double-hockey-sticks in a moment of frustration. Or decide that he no longer likes his once favorite band (Green Day) because he sees an interview with the lead singer in which he confesses to smoking pot. The world is not black and white, people are not black and white, and good people make bad choices occasionally while a person that you may initially think is "SO not somebody I'd want as a friend" can surprise you and save the day! In our case, I think it's all working out. He's finally loosened up and taken to my insubordinate nick-names and wisecracks with good humor, and I no longer cart around a Junior Driving Instructor in my passenger seat! But he's also stated definitively that he'll never get into any of his friends' cars with them if they've been drinking, and he's elected to not drink at all (ever, he says, but we'll see -- the kid won't even drink carbonated beverages, so I think he might stick to this one, at least for a while yet). It's a daily process here, one we tailor to fit the specific circumstances, attitudes, etc. that appear in the moment. I know you'll figure it out as you go along . . . you have a great relationship with your boys, and you know how to reach them. The "basics" are likely to be put out there, whether you like it or not, by the school, clubs (like Boy Scouts) or religious affiliations, and then it'll be up to all of you to further tailor the messages, hone them to reach each boy in a way that suits them and prepares them to be safe, independent and self-sufficient in the world.

Thanks, Chemar! This one's going out to every doctor/psychiatrist/psychologist we've ever seen!

Watching a science show today with DS and saw some information which was new, to me at least. These kids in Wales were conducting their own science experiment, stripping down to their skivvies and diving into patches of nettles. Obviously, they swelled up with welts and had dramatic emotional responses to the physical pain of the nettles. Then the scientists chimed in. Said that the nettles themselves contained serotonin and histamine which, once the protective tip of the nettle was broken off by interaction with an animal, was effectively injected into the animal, provoking both the physical (sting, itch, welt) and emotional (panic, pain) responses! I'd never heard that before, though I've encountered nettles a few times on hikes, camp-outs, etc. Now it makes me curious as to whether or not other plants, animal species contribute the same chemicals, rather than merely invoking a response by the recipient or host?

BamaMom -- Call those docs the other PANDAS mom gave you and get your son some medical treatment, ASAP! I personally think it's a tougher road for our older kids, but still well worth the effort in terms of payoff with the improvement in the quality of life. Stay with it, don't give up, and don't take "no" for an answer!

T.Anna -- My 16yo DS was far, far from PANDAS+OCD+abx = fat, dumb & happy! But we have come out of the tunnel, and you will, too! My DS took abx for 2 full years, had one steroid burst, continues with some supplements and meds, and has never, ever -- at least not in the last 4 years -- stepped entirely away from ERP therapy. We're now down to once per month with the therapist, mostly to brush up DS's skills and catch the therapist up on developmental changes, school issues (if any), etc. But the exposures continue at home . . . not every day, but when the need arises. Still, he's subclinical with his OCD now, enjoys his life, has a summer job for the first time ever, helps around the house, etc. This is a far cry from when he was at his worst: screamed like a banshee in the shower, paced the floor all night, couldn't speak in full sentences, etc. The right medical intervention is absolutely essential, but even when you find the right medicines or even the right combination of medicines, therapy is also critical, IMHO. All these avoidance behaviors, compulsions, etc. . . . they are unlikely to simply melt away with returning health. He will need to learn how to replace that avoidance and those compulsions with healthy, constructive behaviors, and therapy will teach him how to do that, and also train you in supporting him. Hang in there! Unfortunately, it is not a sprint; it's a marathon. But once you're properly "geared up" and have your support team in place, you can and WILL finish!

You'd probably be best off either posting this on the PANDAS forum or taking a look at the pinned threads on the PANDAS forum where there's a list of doctors who recognize and treat PANDAS. Good luck!

My alien is now 16.5, and while he has become more domesticated, I'm guessing his testosterone was at its height at about age 14. I am curious, though. Would it be unusual for these hormone "spikes" to occur during puberty? And are they long lasting, or very temporary? Did your doc not offer any thoughts?

We use it both externally and internally and yes, we're loyal believers in its benefits. Used somewhat liberally (internally), it can lead to weight gain, however. So I guess balance is best.

That he's 15? Sorry, couldn't resist! But don't mean to make light of your question. Looking forward to real, enlightened answers!

All the best to you, your son and the whole family in this latest turn on the path!

Thanks, LLM. And a big "Amen" to that!

I'll just say upfront that I'm a little hesitant to join this fray in any detail, as it's clear that people have some very strong views and feelings; however, I do feel as though some things need to be said, and I've never been one to keep my mouth shut, even when it might be advisable. I have no desire to throw this mom or her son "under the bus." And I am probably as certain as anyone on this board that most, if not all, "mental illness" has its roots in a physical medical issue, whether it's tied to infection or inflammation or methylation, or genetics, or a combination of one or more of these. Therefore, I am every bit as anxious as anyone else to see the medical and mental health communities get their "stuff" together and start looking for root causes, rather than just treating the symptoms or the resulting behaviors, sharing information and research, and ceasing this ridiculous territorial fight over what is "mental" and what is "medical". I am also eternally grateful to Beth Maloney and everyone else who has worked tirelessly to inform, educate and advocate for the PANDAS/PANS community. I owe Beth a personal debt of gratitude because her book was what brought us to PANDAS to begin with, so there's no animosity here in that respect. That being said . . . I truly don't think it is in anyone's best interest -- not these kids, not their parents or families, not our kids or our families -- to throw the term "PANDAS/PANS" out there in the face of these sorts of horrific events. Our childrens' illness is already grossly misunderstood, so the idea that members of the general public or the medical community who are, at this point in time, dismissive of PANDAS/PANS as a legitimate illness, would have "their eyes opened" by linking this boy or Adam Lanza to PANDAS/PANS is, I fear, a misdirected expectation at best, and quite likely detrimental to our best attempts at educating the public and medical professionals at worst. Again, these two particular events/persons that have been cited in this thread were most definitely suffering from illness, and the boy who still lives needs help. Perhaps PANDAS is part of the mix, but as those of us with older kids who have suffered for an extended period well know, the microbe and its mischief are only a part of the puzzle. Without intensive and lengthy therapy, my PANDAS son would quite likely still be stymied mightily by OCD because those coping behaviors become "normal" for him, because it can become habit. So pumping him full of abx or IVIG alone would not have led to the success he's experienced. There's more involved in the illness and the healing, as I think we all know. But throwing Aspberger's, PANDAS, PANS, etc. out there like spaghetti against a wall isn't really shedding light or spurring on research or enlightenment . . . it's just giving the folks who already dismiss or misunderstand more fodder for confusion and/or turning their collective backs on us and our kids. And lumping extreme acts of premeditated violence like these in with any of the "labels" like Asperger's, PANDAS, PANS -- I'm sorry, I have to say I feel that it is irresponsible. We don't know what was in these boys' minds, we don't know what kind of help they were truly being given or what was being withheld, either out of ignorance or lack of access. And too many of our PANDAS kids are absolutely not capable of even contemplating such violence, let alone committing it. But the general public doesn't know that, and likely many medical practitioners don't know that, either. So why would any of us want to plant that seed?! To get attention?! Isn't that a little like the kid who misbehaves to get attention, even if it's negative attention, because any attention is better than no attention?! I truly think we can be more discriminating than that. Help everyone, yes! Get the word out about causal links between infection/medical illness and mental illness, absolutely! Drive the demand for research in this regard, heck yes! But I think we need to show some restraint and, for lack of a better term, some "global responsibility" in the process. I've got my umbrella at the ready for the tomatoes . . .

Was it Swedo or Buster, or Swedo via Buster, who, I think, redefined her criteria in recent years to reflect a 10+ change in a Yale-Bocs score as evidence of "sudden onset," as least so far as the OCD component of PANDAS/PANS is concerned?

It seems to be something of a binary response. There are those who think any publicity is good publicity, and there are those who do not. I'm guessing only time will tell . . .

Is he taking any steroids? Could he have encountered something that would cause an allergic reaction? Have you tried a dose of benedryl to see if that reduces the swelling?

Wow! What a good, thorough article! Thanks!

I think it depends on the specific treatment you use. As explained to me by my local pet expert, the reason there's such a price discrepancy among products is that the less expensive ones only impact the full-grown ticks, fleas, mosquitos, etc. while the more expensive formulations also kill the eggs and larvae stages, as well.

I hear you and KathyN on the violence, whether the rages preceded or came as a result of the wrong medications (or too much of even the "right" ones). What I can't wrap my head around in the context of PANDAS, however, is the premediated, planned nature of this boy's behavior. Anger? Rage? Lashing out in the heat of the moment? Sure! But plotting homicidal destruction on such a grand scale? That's something else entirely, and nothing I've ever before heard of in association with PANDAS behavior, or even OCD. More typically, OCD turns a person's destructiveness inward, rather than outward. I guess my real concern . . . selfishly . . . is that putting a homicidal "face" on this illness does a disservice to the vast number of kids suffering with it who have never, and would never, even contemplate such destruction of others. It's bad enough they're misunderstood to the extent they are; if public opinion sways to considering them "dangerous to others," we'll have a whole 'nother can of worms to deal with. I think they should pursue every possible avenue of diagnosis and treatment for this boy, including PANDAS. I just don't think, given what we know, this level of destructive, premeditated behavior is rightfully laid entirely at PANDAS feet, is all.

My DS took Lexapro (an SSRI) successfully for about 4 years for OCD before we got a PANDAS diagnosis. It was a fairly low dose, however (I think 10 mg.?). As for risperadal, we had been prescribed this for a time when DS was at his worst . . . just one big ball of frayed nerves and anxiety. For him, at a low dose, it did nothing. At a larger dose, it knocked him out and he slept for about 5 hours straight, in the middle of the day. So it didn't, in our minds, actually "treat" anything, but it did give him an opportunity to rest (and us, too, for that matter). Personally, I didn't like it because I don't really like anything that makes him sonambulent . . . it just seems like the biggest band-aid of all possible band-aids to me. That being said, if he's all wound up and has not had decent sleep or a moment's peace for some time, it might be worth it, at least in the short run. Everybody deserves a measure of peace, even if it necessarily has to come in pill form for a short time.

I am NOT a medical or psychiatric professional, but from knowing my own child's PANDAS and having been connected, through all of the stories and experiences noted here on the forum over the last 3+ years, I have a very real concern that 1) this child's issue(s) are not restricted to PANDAS, and 2) that an attempt to corral this level of premeditated homicidal thinking/action into a PANDAS diagnosis does not serve our kids or the PANDAS/PANS community well. I'm all for supporting this family, but who among us has seen our children be capable of such organized, premeditated behavior during a PANDAS episode?! My son couldn't plan for himself into the next HOUR, let alone plan and then execute the building, storing and utilization of explosives over an extended time period! I know our kids can rage and be horribly destructive in the moment during PANDAS exacerbations, but the executive functioning is so disorganized and emotionally labile, that I cannot see the link between what this boy did and what I know of this particular illness. I'm sorry, but I fear there is at least something additional afoot here . . . Just MHO.

Great research, and a great opportunity! Good for you! I honestly don't know if Augmentin or Augmentin XR can claim the same efficacies that you've listed for minocycline, though I'd love a link to the minocycline research! The NMDA and neuroprotective components, though, I do believe to be a common element among b-lactam abx in general; at least that's what I've taken from the reading and discussions over the last couple of years. However, all the anti-inflammatory properties I have seen attributed to a different class of abx rather than b-lactams, so if minocycline brings that to the table, as well, that seems like a very worthy option. Who is recruiting for a minocycline trial? Is it here in the States or elsewhere? That is very exciting! Please stay in touch and let us know how it goes! I'm thrilled you've found someone to help you!

My DS's onset was at least as early as 6 years old (and we frankly think, earlier) and he was not tested until he was 12, so yes, I think testing can still be helpful, even very far removed from the initial onset "experience." Particularly if your child is currently experiencing what the old-school psychs would have us believe is a "natural waxing" of the OCD, completely unrelated to any environmental or sociological changes in the child's circumstances that would normally drive increases in the underlying anxiety. I'm pretty sure there's a list of testing on a pinned thread in the PANDAS forum, and I'm far from expert on that particular topic. There was, in the past, a blood test called "the Cunningham test" that was developed by a researcher, Dr. Madeliene Cunningham; however, my understanding is that this particular testing has been suspended pending some additional funding and/or approvals to recommence. Other than that, there are some fairly basic immune panel blood tests that check the body's immune response, and to that most PANDAS-savvy doctors add tests known as ASO and/or antidnase-b to test for strep titers. These strep titer tests are now understood to be far from conclusive as many kids are diagnosed without any unusual results for strep titers whatsoever; this may be due to other underlying causes (lyme or myco p, for example). But being from the school of "whatever works," I feel like if you can get your existing pediatrician to order an immune panel and strep titer tests, and the results are enough to convince them that PANDAS treatment is something to pursue, go for it! In the end, PANDAS/PANS is a clinical diagnosis, and there is not a single definitive test for the condition; most of the specialists (again, there's a list on the PANDAS forum) use a variety of techniques to diagnose someone, including a detailed medical/mental history, blood tests, even demonstrations of small motor (writing) skills, etc. In the meantime, as you're researching, exploring and deciding which path to take, I would strongly encourage you to keep a detailed journal of your child's health, behaviors, etc. A video diary via cellphone, we found, to be especially helpful in describing to our DS's caregivers the extraordinary and atypical behavioral presentations he had, particularly during the depth of the PANDAS. A journal -- written or video -- increases the strength and validity of your advocacy, especially with folks completely uninitiated or only nominally knowledgeable about the condition. Good luck!

I don't know if there are other meds/supplements that are necessarily preferable to beta-lactam abx for glutamate modulation, but there are some that are OTC and/or more commonly used for the purpose and perhaps more likely to be prescribed by docs than abx. NAC works for some, but not all, of our kids. Melatonin is another glutamate modulator. Some docs prescribe riluzole, lamogitrine and/or namenda for those properties, as well. It's a fairly deep topic and makes up a large research sector right now for brain-related conditions, including autism, schizophrenia, OCD, bipolar and MS.