MomWithOCDSon

Thanks for the info! We've got a steroid burst "in our back pocket," but we've been somewhat reluctant to go forward for a host of reasons, the moods and hunger being two. At least now we know what to try to mitigate some of that.

Can we each spare a couple of minutes in our day to continue to vote for those causes (like Narcolepsy) that were so supportive of us and helped us climb that hill, but still have a hill to climb themselves? I plan to continue to log into the Refresh project every day this month and cast votes for our "friends." Maybe we can help them make it like Kelly and Vicky scored a big one for our team!

Would you have a willing "helper doctor" on a local basis, who, through consultation with the out-of-states, issue prescriptions, lab orders, etc? I'm sure there are insurance companies and situations in which out-of-state doctors and charges are considered covered claims, but we've come up as "uncovered" against out-of-state options a couple of times now, even when there was no viable alternative within our state. Not a big fan of my insurance company. Whatever the case, if you could funnel things through a local, insurance carrier-approved doc, it would probably make things go smoother in terms of making claims and getting them paid.

I wish the vet had done an autopsy and the blog had reported the results.

I was just considering starting a post on this topic, so glad to see it appear here this morning! Our DS13 has been taking one SSRI or another since he was 7, believe it or not! We didn't know we were dealing with PANDAS until this past October, and by that time we'd tried about 4 different SSRI's and a host of other psych meds. We came to PANDAS because the SSRI's had ceased to be of any assistance to him, regardless of which one we tried or at what dosage. About the time we discovered PANDAS, he'd been put on Luvox, and the dosage was up to 200 mg.; our understanding is that Luvox dosage "tops out" at 300 mg., so DS was on a fairly high dose. Once we tapped into this forum, we were introduced to other family's negative experiences regarding SSRIs and their PANDAS kids, and someone provided the Storch research paper, as well. Meanwhile, DS continued to improve on abx, so we left the SSRI in place, feeling it was neither helping nor hurting him at that point, but relunctant to change too many things at once. This summer, however, with more free time on his hands and a looser schedule and routine, DS's OCD seemed to ramp up a bit again. So we decided to try stepping down the SSRI and see if, since the abx was helping him recover, maybe now some of that SSRI was becoming "redundant" and activating rather than assisting him. We stepped down from the 200 mg. to 150 mg. and held that for 3 full weeks. In just the first couple of days, he seemed to improve in terms of general anxiety level and emotional lability, but over the 3 weeks, his OCD behaviors seemed to ramp back up a bit to where we were considering going back up on the SSRI, however reluctantly. But then, because we were already on a "reduction trajectory," and we could always go back up again if we needed to, I talked DH into trying lowering yet again and see what happened. It's still pretty new, but 6 days ago we lowered the Luvox yet again, to 100 mg. The positive impact appeared within 48 hours! It's like I have my old kid back! He's more positive, more upbeat. He still stresses some at transitions and decision-making, but it is shorter-lived than before, and it doesn't get him down for hours like it used to; he bounces back much more quickly. I'm knocking on wood, but I am 95% convinced this is all the result of reducing that SSRI dosage. So, now I'm a true believer in reducing, if not weaning off entirely. The Storch study DID find some benefit to introduction of an extremely low SSRI dose, but it was almost infinitesimally small as compared to the doses some of our kids have been on. But I would take it slowly, as sometimes what you think might be an increase in behaviors is really more of a withdrawal symptom, especially with regard to some of the tougher SSRI's to curtail. I, too, have heard that Zoloft is a tough one to cease, though I don't have personal experience with it (our DS also tried Zoloft at one point, but I think we only gave it a couple of weeks at a fairly low dose before we concluded that it wasn't helping him, and dropped it).

Congratulations! Thank you, thank you, THANK YOU!!! SO EXCITED!!!!! And probably additional media attention, to boot!! It's been said before, but won't hurt to say it again: Vickie and Kelly, you guys ROCK!! Wish I had Chemar's Happy Dance Emoticon! (wanna share a link? ) Oh happy day!

That is SO cool!!! Thanks, Kelly! Way to go!

my ds as well has horrible seasonal allergies...... do you have any concerns with zyrtec and benedryl...... i would like to do both but have been told several times not too.... We don't give him both Zyrtec and Benedryl at once, and we've tried other over-the-counter allergy responses (like Claritin), but they've not worked for him. The Zyrtec we give at breakfast, and he gets the Benedryl at bedtime, so I don't think there's any overlap. We've seen nothing but good in his response, but I know allergy medicine responses can be very individualized.

On tetanus shots . . . I know there are day camps in our area, etc. that will not accept a kid who's not up to date on their tetanus innoculations. Too many risks for them, I guess, if your kid is involved in outdoor activities, horseback riding, shop, etc. With regard to vaccinations in general, I heard Dr. Kenneth Bock ("Curing the New Childhood Epidemics: ADHD, Autism, Asthma and Allergies") not too long ago, and what he said made a great deal of sense to me. He says he's not "anti-vaccination;" rather, he's for "smart vaccination." Meaning, not all at once, with a child with an immature immune system, and not at moments in time when the child may be compromised by some other issue, such as currently fighting a virus, etc. He believes much of the issue is in timing and a genetic predisposition for having trouble eliminating toxins which causes some kids to have a negative reaction to vaccines while others do not. If I had it to do over again, I would not have made DS13 subject to all the standard vaccinations recommended for and given to him as a matter of course, and I'll be carefully watching any recommended boosters. I do think vaccinations have not helped his immunological picture overall, though that's more gut than provable. I certainly wouldn't want him prone to some of the horrible childhood illnesses like polio, but what kid of our generation hasn't lived perfectly well through a case of the chicken pox? And why vaccinate a baby for Hepatitis B when that is only transmitted through sexual activity? Tends to make one cynical about the whole marriage between Pharma and the FDA, don't it?

That's a really good question. We started quercitin back in the spring, when the pollen first began to get out of control here in the Midwest; our DS13 is highly allergic to pollen and mold, and his seasonal allergies have always been an issue, but this year, they seemed worse than ever. We thought that getting the allergies themselves under control . . . being as this is also an immune system response . . . was behind his overall improvement in behaviors (OCD), but may the histamine itself plays a large part? We LOVE quercitin, though we've also added Zyrtec and Flonase in the morning and Benedryl at night. His unrelenting sneezing has been curbed to almost nothing as a result, and he's overall in a better place with the allergies managed.

Another happy story! Cheers to you and your girls! Thanks for giving us all another bright light to look forward to at the end of the tunnel!

I feel amazed, blessed, inspired and humbled, all at the same time. When I first logged into this forum some nine months ago, I didn't realize I would be tapping into a group of such dedicated, hard-working, intelligent, resilient people! YOU guys made this happen for Dr. Cunningham . . . especially you, Vickie! If you were a paid employee in this effort, you would be Employee of the Month for sure and probably have put in weeks of overtime when it's all said and done! I am aghast at what the group has collectively pulled off, with the benefit of such strong leadership! $50K for research for PANDAS with Dr. C.!!!! OMG, as my DS would say!! Thank you, thank you, THANK YOU! ! ! ! ! ! ! ! ! !

Thanks, Peg! We can collectively cross one more "professional cynic" off our list! It makes me all that much more fired up about our local pediatric infectious disease "expert," Stanford Shulman; turns out HE'S the one our pediatrician has been "listening to" on the topic of PANDAS, and all he ever says is he doesn't believe in it. Like that's some sort of scientifically-achieved conclusion! Luckily, our pediatrician is thus far willing to prescribe abx, but I can't even talk to her about switching abx, or steroid bursts or . . . heaven forbid . . . IVIG. She shuts down when I want to talk about the bigger picture or implications. Meanwhile, one of our other doctors pulled some PANDAS research articles off some professional database he has access to, and among them was an article by Shulman. All naysaying PANDAS. No research, just a review of other folks' research with which he begs to differ. But what really kills me is HE QUOTES HIMSELF OVER AND OVER! Seriously, about 6 of his total 10 sources in the article are previous things he's written or been quoted in! How's THAT for self-serving, narcissistic, circular logic?! May there prove to be many, many, MANY more docs like yours, Peg! And kudos to each PANDAS family who manages to inch them toward The Light!

Oh, Emerson, you break my heart! You sound so much like my DS13! Bright, perceptive, sensitive and maybe a little challenged in the social department! But look at the bright side: maybe you realized it a little too late, but you DID finally realize that you'd "gone off," waxing Icelandic when your audience didn't really care. So, maybe next time, you'll find yourself thinking twice before going into launch mode. Or, better yet, you WILL make some friends who are either equally-minded, so they don't care and fully understand when your brain (and mouth) kick into overdrive, or ones who tend to be quieter and more flexible, so they don't mind hearing your vocalized mind chatter or following your idiosyncratic discussion topic leads (like blood parasites). Really, all it takes is one person with "puzzle jags" where you have "puzzle jigs," and you'll likely have a friend for life! Don't give up! Don't retreat and hibernate; don't add self-directed loneliness to the tough path you already walk! I don't know if you've seen it, but there's a paperback book out called "ADHD & Me." I've forgotten who the author is, but it is sort of a mix of an autobiography and a self-help book by a boy -- first junior high age and then through high school and into college -- who had ADHD (and it would appear some Aspberger traits, as well) who faced impulse control issues, socialization challenges, etc. at school and at home. He tells some hilarious and some heart-breaking stories of impulsive acts, trying to fit in, then sometimes withdrawing because he's concerned he'll NEVER fit in, etc. And at the end of each chapter, he sums up some thoughts about how you can avoid falling into some of the same traps he did at first, etc. Hang in there!

So TMom -- Would you say that the two steroid bursts made a dramatic impact in your DD's recovery? In other words, did they "jump-start" the efficacy of the abx, do you think? And what type of "burst" did you use: a shorter one (like the 5-day treatment we've been prescribed by Dr. K., more or less for diagnostic purposes), or a longer, multi-week one with a long taper? Personally, I'm wondering if the steroid burst might not provide some "rejuvenation" to the abx therapy, but I'm wary of giving him something very short-lived that will give him additional help, only to fade away too quickly and therefore serve to demoralize him in his fight against all of this. Additionally, unlike a lot of kids here, our DS has had a tendency to be overweight, as opposed to underweight; Dr. K. attributes this to his fairly long-term use of SSRI's, which we are in the process of tapering off. Still, as I understand it, steroids can cause weight gain, and I don't want to further complicate his self-perception by helping him add pounds. Any thoughts? Thanks!

We've been on this roller-coaster a few times already, and it has led me to be very wary of changing/dropping meds prematurely. I think because the first positive "bump" brought about by the abx was so dramatic, we kept looking for that same response in DS13 as the abx went on. But it just hasn't happened. As you mentioned, if we decreased his meds and/or took him off, he would decompensate and then there would be improvement again when we began abx again, but nothing seems to have been as dramatically positive as that first time. It's hard because this is all so subjective, and DH and I constantly second-guess ourselves as to whether or not we're being too hopefull, too cynical, too impatient, etc. So, ultimately, we've decided we've just generally been too impatient, and we've decided to stick with the abx for an extended period, without wavering. We continue to note small gains in DS with respect to his OCD behaviors, so whether or not those gains are attributable to abx or time or therapy or a combination of everything, we don't know and cannot hope to discern with any certainty. So we're going to stick with the status quo, I think, until we hit the year mark, and then maybe re-evaluate. Of course, everything changes almost daily . . . didn't somebody else say it here a few months ago? We need to be open to dating . . . maybe even going steady . . . with a particular treatment, but don't necessarily get married to one until there's some overwhelmingly compelling sense that THIS IS IT!!!

I don't know how it is I haven't come across this site before, but it seems to have pretty much all the information anybody could want about every probiotic strain on the planet! Plus, if you scroll down on the menu on the left-hand side of the site, you'll see that they have reviews of some of the popular name brands, too, like FloraStor. Probiotics.org

That's wonderful news, Tracie and Doug! A lot of hard work and tenacity has gone into your DD's recovery, and you should all give yourselves giant pats on the back! Sometimes it's what looks like a "little thing" to the outside world that means EVERYTHING to a PANDAS family! Sweet dreams!

These is a strep/narcolepsy connection. Apparently, while there is a gene associated with narcolepsy, they've also found that people who experience narcolepsy tend to have higher strep titers than the general population. Our DS13 also experiences some narcoleptic behaviors, especially when under extreme stress; he will feel an overwhelming desire to sleep (what the narcolepsy community refers to as Extreme Daytime Sleepiness or EDS), though there have been no instances of cataplexy as of yet. My understanding, however, is that the cataplectic end of the illness comes later. Here's a link to the research paper on the topic. Elevated Strep Titers and Narcolepsy

Or almost an "allergic reaction," like her immune system reacts strongly to whatever impulse/agent (anaphylactic shock-like?) and brings about inflammation in her face. Wondering . . . do her hands or feet get puffy at all, too? How long does it last?

The recent thread about dairy products and azith made me wonder what else those of us giving our kids abx and various supplements, etc. might not know in this vein. So I came across these in some web research; they might be useful to some: United Kingdom Abx Fact Sheet for Pharmacists Calcium Prohibits Absorption of Certain Abx Abx Interaction with Supplements and Herbs - Prevention Magazine There's also a note in Wiki about zinc interfering with some abx absorption, but I haven't been able to document that any further thus far.

So we were one of the last families in our circle to actuall purchase a Wii, but now we're grateful for it, especially on those days that it hits 95 degrees and 98% humidity around here! Anyway, I'd been wanting a Wii Fit (after having taken the body testing, I'm starting to second guess myself now), so we finally sprung for one today, and I decided to play that soccer-ball-head-smashing game. Ironically, while you're supposed to hit all the soccer balls with your head, you're s'posed to avoid hitting the soccer cleats and stuffed Panda heads hurled your way! I'm sure I'm just overly sensitive, and they no doubt chose pandas because of the black/white coloration similarity to a soccer ball, but this game took on a whole new meaning to me! Now I just have to get better at it so my Mii doesn't have to hang her head in shame after every match! I'm hoping DS13 is far better at this particular exercise than I am (he's yet to try it). If he can avoid the flying Pandas heads, I've decided to take it as a good omen!

Is he aware he's doing it? Does he choose to do it? Because it is something of an extended and complex motion, I would tend to think it is a compulsion, rather than a tic, but I think the line there can be thing.

This is interesting as we've purposefully increased probiotics over the last few months, and DS's behaviors have sort of plateaued during the same period, as well. Like everyone else, I'd love to find an answer/causality, so now I'm wondering if we could find a good "balance" in this regard. DS has not complained of tummy issues for some time, with the exception of a period of about one week when we stopped using bentonite clay because he was concerned that he was getting constipated. Without the clay, though, the gas, bloating and discomfort returned, so we went back to using it every other day, and all's been well in the tummy department since. Kimballout, we use Sach B (5 billion per capsule) and a strep-free blend (lacto and bifo at 14 billion per capsule) we get from The Vitamin Shoppe. We've also been using a 75 billion unit capsule ordered from Kirkman Labs, but if it's true that higher doses could exacerbate immune response and/or some of these behaviors, we may revisit that kind of dosage. Anybody have any research papers in this regard? Everything I've read up to this point has been very pro-probiotic, and I know that we've had some positive results (especially physically) as a result of their use. But now I'm wondering of there is a "tipping point" beyond which it might be unwise to go? Or if it's another one of those things where it can vary widely from kid to kid?