MomWithOCDSon

I heard a report this morning on NPR about the rising rates of asthma, and one of the doctors interviewed commented upon the relationship between hormones and inflammation. I've always thought there was something to that with respect to DS, too, seeing as how many of our PANDAS kids hit their first major exacerbations upon the onset of puberty. Much of this is geared toward women, but hormones are hormones! Pro-inflammatory hormones Chronic inflammation Affect of sex hormones on inflammation So, maybe some of our kids are being hit by 3 factors simultaneously: hormones, infectious agent, and a genetic predisposition? Aarrgghhh!!!!

I will also add that our psych prefers Intuniv to another non-stimulant medication for ADD/ADHD behaviors, Straterra. His response was purely anectdotal, but when questioned, he replied that he's seen a lot of kids for whom Straterra doesn't seem to work, but the research on Intuniv suggests it is a good option.

mom - do you also use ibuprofen? or do you use the valerian like others of us use motrin? valerian is an herb, yes? what form does it come in? thanks. Yes, valerian is an herb, and the dried form of it is put into gel caps and sold at health food stores and places like The Vitamin Shoppe. It has a pretty strong smell, so we tend to open the bottle quickly, pop the capsule out, and hold it in an enclosed fist until DS is all set to pop it in and swallow it with a glass of water. I suspect it would taste bad, were he to crush the gel cap and get a lick of the actual herb on his palate. But, for the most part, is just smells strongly herbal. We don't use it in place of Motrin or Ibuprofen; I'm not sure, but I don't think Valerian has any anti-inflammatory properties. What it does have is "calming" properties, so if he's "edgy" or something sets him off right before it is time to go somewhere . . . school, the doctor's office, etc. . . . we find that taking a single Valerian capsule can help take that "edge" off.

Is clonopin the same as clonansepam? We had used clonansepam at points during our DS' heaviest anxiety periods, and it did seem to help considerably. Our DS also has disorienting "chatter" in his head at points of high anxiety, like at homework time or when he's called upon to make a quick decision. Upping the abx, if this is PANDAS behaviors, should help as well. I will also say that we have used Valerian Root to considerable success with what we call "residual anxiety," despite abx treatment. On days when he's feeling a little edgy before going out the door to school, for instance (transitions remain the most anxiety-producing times for him), he'll take a Valerian right before we leave. Maybe some of it is psychosymatic, but it does seem to help.

Yes, we have. And it appears to have helped with focus and "antsiness." DS13, 130 pounds, started on 1 mg. Intuniv about 5 months ago; after 1 month, we increased to 2 mg., and we have held it there since (I think max dose for ADHD/ADD type behaviors is 4 mg.). Both times we began the doses, he had 3 or 4 days of feeling drowsy in the afternoon, but he would adjust and that side effect would fade away by about day 5 or 6. We also understand that it can lower blood pressure, so we have a home blood pressure monitor that we test every 2 weeks or so, and we always make sure he has a good lunch and an afternoon snack so that his blood sugar doesn't fall off and cause him to fade in the afternoon. DS reports that he feels more focused and less antsy in school since beginning the Intuniv.

My understanding is that Dr. K. is working on publishing the results of his treatment practice over the last several years. His web site already has a number of case studies and some percentages/statistics with respect to his own patient base. That being said, I think all of this is still evolving . . .

Do you vote on Facebook or on the link provided? Either way, though if you already have a Facebook account, that's probably easier. My DH first tried voting through the PEPSI gateway, and it kept jamming up . . . maybe because of all the activity (let's hope!).

Ditto for us, here!

Happy Birthday, Danny! Way to go, Melanie!

My vote is in, and its posted to my Facebook page, too. Giddy-up!

According to our doctor and some reading, antibiotics readily kill of acidolpholus organisms, which is the predominant organism type in both yogurt and kefir, so these should be sprinkled in some 2 to 3 hours before or after an abx dose. However, the Sach B (found in FloraStor and other generic probiotics) and lactobillus (found in Culturelle and other generic probiotics) are more resistant to abx and will survive, at least to some extent, even if dosed concurrent with abx. Still, the conventional wisdom is to give them some space from the abx dosing for maximum benefit. When your kid is in school, etc., however, that's just not always an option. So we dose with his abx at breakfast and at dinner, plus we give him additional units at lunch on weekends or with his after-school snack on week days, and then another round of probiotics at bed time, along with his melatonin. As a result, he rarely complains about any gut upset.

Like so much else with PANDAS, response must vary significantly by individual. We've give both FloraStor and Culterelle to no ill effects, as well as various other pill-form probiotics in significant measure. Right now our "biggest gun" in the probiotic arsenal is a pill-forum supplement from Whole Foods under the brand "Renew Life:" 50 billion organisms per capsule, and high bifido content. Again, no ill effects so far as we can tell. DS did formerly eat lots of yogurt, but now that we're trying to go dairy-free, that's not much of an option. He never liked Kefir anyway, no matter which flavor I tried. DH wound up drinking it all!

I'm SO sorry! And I'm sorry, too, that I don't have anything to offer. We're going through our own bumps, though it does sound as though your DS is having an especially rough time. Have you scheduled IVIG, or just entertaining it? Hang in there, and hold onto anything and everything positive you can salvage in the here and now. It sounds as though you know all the twists and turns, and will implement every available option. Hold on to the thought that you've gotten through it before, and you'll get through it again.

As so many OCD onsets seem to be related to either PANDAS or PITANDS, it would certainly make sense for your friend to fully explore that possibility first via all conventional methods. Failing that, or if the condition has in any way become "behavioral" and PANDAS/PITANDS intervention cannot fully set aside the hair pulling, I know this condition is considered to lie on the OCD spectrum, and there are therapists who specialize in it. The OCD Foundation might be a good resource for finding a local practitioner with the experience, especially with kids and the disorder. In my area, we have the Anxiety and Agoraphobia Treatment Center, with CBT and ERP professionals who specialize in this disorder: AATC - Trichotillomania All the best!

Yeah, it strikes me as odd, also. A dermatologist, a plastic surgeon . . . those are the guys you might expect to see with a medical day spa. What's the professional link between an immunologist and botox? Aren't the professional goals of healing one's immune system versus injecting poison to freeze muscles and tissues contradictory somehow?

Nice! Seems as though "Frontline" might be in for more than just the usual blow-back following this recent presentation!

Yes, but read the comments..OUCH! I know . . . but take a careful look at the vernacular and the lingo each of those posters has used. Honestly, it looks like a "PR bomb" to me, as in somebody at Pharma, CDC, etc. pokes some of its worker bees to go into action against such negative press. What "typical" readers of a Philly paper would come armed with terms like "pseudosymmetry," "mercury derivative," "temporal connection" and "causation"? Who talks like that on a regular basis, besides some scientists and/or doctors (present company excluded, Buster! )? The comments section comes off as "rigged" to me.

Well, if you liked that one, here's another one: More Disappointment over "Frontline" Vaccine Story

Well, NancyD, you're not the only one unhappy with Frontline. My DH found this just this morning: Response to "Vaccine War" Front Line "Documentary" Very disappointed. I used to like "Frontline" a lot!

Thanks, Vickie. I was downstairs, helping DS with his homework, when DH came to tell me it was on. Unfortunately, we already had the cable DVR set to record 2 other programs at the time, and that's the limit! So I'll be glad to catch this episode via your post.

Ditto. I feel torn everyday when I leave for work, not knowing what kind of day DS is going to have. I've been with my company for more than 20 years, but now it's beginning to look as though we're not going to survive the recession, either, and I'm incredibly torn about a fresh job search; what kind of flexibility can I manage? what kind of mom can I be while still earning a majority of our family income. DH is an artist, and while he does fairly well, he is still freelance, and his income is not reliable for monthly bills; that's all on me. I've been very fortunate up to this point to be in a job . . . and in a profession . . . that is fairly flexible. I have deadlines, but it's pretty much my choice whether I meet them 9 to 5 on a Tuesday, or if I'm back at my laptop after DS is in bed, or on a Saturday when he's engaged in a video game or off to the swimming pool with DH. So I think that's one suggestion: see if you have a skill set to offer in a less "locked in" line of business, one in which it is more self-directed and you can make up for any perhaps "lost" hours due to your kids' needs or appointments, at odd hours when your family is more or less at peace. The other suggestion I would have is sort of the flip side of that: go to work for a large company that is compelled to abide by governmental guidelines with respect to sick time, family leave, etc. It's not the ideal situation for anyone, if your child's condition should require your taking time off more or less immediately after being hired. But at least you would have some protection, I think. In the end, I think U.S. businesses are wising up these days about employees having families, outside lives, a need for flexibility, etc. Hopefully, if you're putting out that vibe that says, "I'll do whatever it takes to meet the company's needs alongside my family's, just give me a chance," that chance will come your way! Hang in there, share with the hiring world the dedicated, caring, responsible individual that you are, and anybody'd be crazy NOT to hire you!

No, unfortunately, he's dropped out of speaking/attending this one.

Terrific news! Relish it, celebrate it, praise DS and make sure HE'S aware of the turn he's taken (my DS continued to beat himself up for a while even as he was gaining ground because things still weren't "perfect"). Hopefully, this time, with a good ENT and Dr. B. in your corner, that rug has a non-slip pad beneath it! I was just yesterday showing DH the difference in our DS's math notebook between January and this past week; despite some other setback's, DS's math skills and especially small motor (writing) skills have continued to improve. Honestly, the handwriting doesn't even look like the same kid's, let alone the same kid just 4 months apart! I wish I'd thought to bring that notebook with us to our psych appointment last week: one more irrefutable piece of evidence, more convincing, probably, than my own journaling. The handwriting speaks for itself! DH was floored himself, as he hasn't been keeping as close a watch on it as I have. Maybe we should frame some of it: "Before" and "After"!

I am attending, also, and would love a chance to interract, face-to-face.

I have an acquaintance in Australia who believes his son is suffering from PANDAS; however, the doctors there don't seem to know much, if anything, about it. I've suggested this forum to him, as well as having forwarded him the reams of background research and journal articles I've found here and elsewhere, and he seems to have found some open minds out there, at least. I guess the doctor is willing to prescribe antibiotics, but there appear to be some limitations. For instance, it seems Augmentin XR is not available in Australia! I'm not certain that this doesn't mean there isn't another time-release alternative available under a different name, but at any rate, they are encountering some difficulty. Is anyone here from the great country of Australia?!?! Any advice on mail-order prescriptions or anything along those lines that might help them out? I had previously emailed Dr. T. to ask if he had any colleagues in Australia he might refer this family to, but I suppose the answer was "No" because I didn't hear back. Thanks in advance for any help you might provide that I could pass along. Nancy