MomWithOCDSon

I think this is my point exactly, as our experience has been much the same. We very well may have had "sudden onset," or overnight behavioral changes, too, but when the child is as young as ours would have been -- likely under three -- and also entirely asymptomatic for strep, how could we or the physicians, even now, connect the dots?

Interesting! So am I mistaken in understanding that "sudden onset" was part of the initial criteria following Swedo's first study? It has certainly been cited to me by our psych more than once. Has the NIMH changed its criteria over the years as more information and evidence has come to light? Then why do we continually hear and see "sudden onset" identified in the press and by current practitioners like Leckman?

Oh, I wouldn't advocate dropping "sudden onset" as an indicator, for sure. I'm just sensitive to it being a criteria, as this very early, Swedo-born "requirement" has, in our experience, ruled out too many of our kids, especially when granted strict, literal interpretation by a medical community still in its infancy with regard to the disorder.

While I have heard of, and personally know one child who quite literally woke up one morning with severe PANDAS symptoms after having shown few if any signs of her hallmark symptoms (separation anxiety, OCD) prior to that day, our own experience has been one in which the disorder crept in more gradually, with only the latest, nastiest exacerbation having driven us forward in our research until we found PANDAS. From reading posts here for the last few months, it seems that this is not an uncommon experience among PANDAS families. So I thought I would start another poll: would your child meet a "sudden onset" diagnostic criteria, or did your experience begin too young, too quiet, or too slowly for that terminology to appear applicable to the standard physician?

Thanks, Dad! When you get a date and time notification, can you share it with us? I seem to be on one of Beth's email lists, but I didn't get this info from her, so I missing on some info pieces. Would hate to miss that show! Thanks again!

I forgot to mention, too, that we're trying quercitin as a supplement; it's supposed to be a natural histimine blocker. The jury's still out as to whether or not it is assisting, but, anecdotally, at least, he's sneezing less these days . . .

We use Benedryl if he is stuffy at night. During the day he uses a prescription nose spray: Flonase. All good . . . negative impacts or interactions, and we use them year-round because he has some non-seasonal allergies, also (dust, cat dander, mold).

We're in an identical place, ajcire. When a child is entirely asymptomatic physically, as was your son, mine and Sammy Maloney, then who's to know when that "onset" began?! At first I thought that our DS13's "original onset" must've been at age 6, when he was first diagnosed with OCD. But then I hear and read about strep and chronic ear infections, and since DS had one ear infection after the other from about 18 months until age 3, when he had tubes inserted in his ear drums, his "onset" could have been MUCH earlier! But how to separate his displays of separation anxiety and rages at that age from what is standard for the age group?!?! I really rebel against this "sudden onset" criteria for obvious personal reasons. We discovered PANDAS at age 12, despite a pre-existing 6-year-old OCD diagnosis. If our pediatrician had insisted on a "sudden onset" criteria, she would have refused to treat DS, and if that becomes part of the established criteria, she would have had good reason. But here's the thing: the abx WORKED and continues to work! So it IS PANDAS . . . at least in part, if not in whole . . . and to have excluded my DS or yours on anyone else's without at least TRYING the treatment is heartless lunacy!

About 2 weeks ago, we reduced our DS13's abx regimen from 1,000 mg. Augmentin XR, twice daily, to 1,000 mg. Augmentin XR in the morning, followed by 500 mg. Augmentin in the evening. The first few days went fine, with no noticable issues; in the past, when we removed abx entirely, it would take 7 to 9 days for his behaviors to return in full force. On about day 5, however, he had a definite uptick in general anxiety -- more trouble getting through homework, struggling with some contamination OCD, and a couple of meltdowns 2 days in a row, which had previously been a rarity. We were beginning to think we needed to step the dose back up, but held off for a couple more days. In retrospect, it appears the return of his behaviors may have been more directly related to an uptick in season allergies, a tough school week, etc. than the downgrade in the abx as he "evened out" again in the next two days and was even improving in terms of contamination concerns. More recently (3 days ago), we stepped down again: 875 mg. Augmentin in the morning, and 500 mg. Augmentin in the evening. Once again, it's hard to really determine all the causality, but he is doing terrific! (Knock on wood!) He's level, handling all the demands of school and homework without meltdowns, and undertaking his ERP with enthusiasm and determination; we are thrilled! But of course the demands in school of this week have appeared lower and the weather is finally decent and sun-shiny, so who's to know what one -- or 20 -- things are behind the overall improvement? We just keep taking it one day at a time, I guess!

The standard adult daily dose of Augmentin XR is 4,000 mg. per day, or 2,000 mg. (2 tablets) twice each day. That's per the GSK web site info as well as my uncle, a pharmacist with the National Health Service.

Please count me in, as well. I'm in the Chicago area, too, and am ready and willing to go! Thanks for the great ideas; just let me know what I can add to implementation!

So many emotions, that poem brings up! Thanks, Vickie!

So sorry! Does he have allergies, too? It's just beginning to warm up in our neck of the woods, and our DS has been sneezing and sniffling and rubbing red eyes for the last couple of days. Maybe your DS accidentally rubbed an infection into his. We're using allergy eye drops to try and avert any more permanent damage.

Our DS13 takes a slew . . . we give probiotics throughout the day and split his supplements/vitamins between breakfast and dinner. In terms of probiotics, keep in mind that most abx kill acidolpholus, while lactobillus and sach b. are more resilient. Since yogurt, kefir and the less expensive probiotics contains mostly or exclusively acidolpholus, these are only really beneficial if given 2-3 before or after abx. Brands like Culturelle and Flora-Stor are lactobillus and/or sach b, and sach b. can be purchased individually as well. Supplement-wise, this forum has been a great resource for experiences with various vitamins, herbs, etc. You can thumb through the threads and find a lot of information. Our DS currently takes the following in addition to abx and probiotics: vitamin D3, vitamin B complex, inositol, quercitin, tumeric, magnesium and NAC. Then melatonin at bedtime!

I agree! In our case, the melatonin got him to sleep . . . it just didn't keep him there. We should buy stock, too! Ever since putting DS on it and seeing what a change it made in getting him knocked out quicker every night, DH and I have been taking it, too. IMHO, works better than Benedryl!

Yes, DST stinks in our house, too! DS13 barely slept last night, though he's been sleeping very well for the last several months. I will say that Sunday nights are usually the toughest, though, so even though we tried to rouse him earlier yesterday, just so going to bed last night would be less of a struggle, I could hear him tossing around for at least an hour after "lights out." Then he was up at 3:30 going to the bathroom, I heard him again at about 5:00 a.m., and then when I went to turn his light on at 6 a.m. (standard school-day wake-up time), he sprang up out of his bed, wide awake. Scared the life outta me! At least he was in a good mood this morning and got off to school okay (thanks abx!). But I would unfortunately lay money on some struggles if not a full-blown meltdown this afternoon, when he runs out of gas toward the end of the school day.

Hi! So sorry to hear about your son's struggles as well as your own. Vickie's given you all the great responses thus far. I just wanted to add that our son is on the older end of the spectrum (13) too and, no, I don't believe you're too late. It's terrific that you're seening an experienced PANDAS doc and can get some solid advice as to the correct physical/medical treatments for your son in light of his history and age. I'm sure once that treatment kicks in, you will see some relief from some of the issues he currently suffers with. I will, say, though, that, in our experience at least, dealing with the PANDAS medical stuff is only part of the work to be done. Don't know if it's because, at their older ages, our son's have suffered some actual "damage" by virtue of the infectious agent having been allowed free reign too long, or if it is because they've formed behavioral coping techniques or habits during their formative years that are hard to break free of, even once the brain is given healing assistance by the PANDAS treatment. So don't get discouraged, hang in there and consider going after this thing with all sorts of artillery: antibiotics and/or IVIG, exposure response prevention (ERP) therapy, cognitive behavior therapy (CBT), therapies specific to autism-spectrum disorders, etc. All the best to you and your family!

We, too, used clonanzepam during the tough days. I think, at DS's worst, we were up to maybe 1.0 mg., but as Gat's mom said, I would try 0.5 mg. and see if that takes the edge off sufficiently. We've tried valerian root only a couple of times in the last few months, and it, too, seems to help, though not as dramatically or quickly as the clonanzepam. It's attribute, though, is that it is herbal and available over the counter. Sorry, I'm not sure what the dosage is; we just gave him a single capsule.

Though no one's labeled him as such, our son's IEP testing with the school psychologist indicated some "autism-spectrum" issues which we, too, had recognized prior to entering the world of PANDAS. He's always had "learning differences," even though he's generally tested on the "gifted" end and been placed in advanced and gifted classes most of his academic life thus far. And socially, he's always been a bit of a lone wolf and hyper-focused on what's interesting to him, even when his peers would try to wave him off or change the topic. Sound familiar? What we notice, along with almost every other psychological issue he's ever expressed in his short life-time, like OCD, the PANDAS exacerbates everything . . . the sensory integration challenges, the autism-spectrum processing and social challenges, the ADHD, the OCD. It's as though the brain wraps everything up in the same package in some way. I guess I would say, since PANDAS is a physical/medical issue, we're meeting that with physical/medical responses, like abx. Meanwhile, the processing, sensory and OCD issues we're trying to meet with therapy (CBT and ERP), school accommodations and patience. It's been my experience that with therapy and some consistent parental and school coaching, many of the primary asperger's behaviors (especially the social ones) can be outgrown.

My son's social issues manifested in him becoming profoundly ANTI-social. He withdrew. Didn't want to have friends over, didn't want to go out in public places like restaurants, the movies, the mall, school. If we insisted he had to go somewhere, he either needed something like a Game-Boy or an IPhone to keep him calm and contained (distracted in a small, safe way), or he would engage in a lot of odd physical behaviors like twitching, flinging his head back, etc. He, too, had extreme separation anxiety and could not be left alone, even in our own home. And being in a crowded place or expected to stand too close to other people wasn't even an option.

Couldn't agree more! For our DS, I think the tummy trouble began with anxiety, but then the OCD grabbed hold of it and turned it into an obsession that he had trouble shaking until abx.

Avoiding aspartame and MSG, I get, but why tomatoes and peas? Really? You'd think the "good" in fresh items like that would outweigh the "bad." Anything else on that "to be avoided" list? Do you have a link you could share?

So good! Congratulations! It's wonderful when you find the "right" treatment, isn't it?! Enjoy!

I missed the first half (I'll have to "Hulu" it later), but I'm catching the second half now. I've seen the Janni girl on another program, with her imaginary friends Tuesday, Wednesday, etc. Really scary and painful. Right now, I'm just incredibly agitated that some of these kids aren't getting the help they need because the parents are tapped out financially and the insurance companies cease to cover hospital stays, etc. OMG! How WRONG is that?!?! My DH just reminded me that that "Scientific American Mind" article that circulated several weeks ago -- "Infected with Insanity" -- mentioned a link between flu-infected pregnant moms and schizophrenic children. So while I haven't heard them mention single infectious agent affiliated with any of these children thus far, the potential has been noted elsewhere.

Wow! This is very exciting! I haven't heard of ANY clinical trials of any particular PANDAS treatment, only potential diagnostic tools, like the Cunningham study. I've often wondered why one of the pharmaceutical companies didn't get behind a trial, like GSK behind Augmentin XR or one of the immunoglobin providers behind IVIG. I believe Dr. K. is a proponent of the higher dose IVIG (2 g), though I think I've heard that Latimer and some others prefer lower, more frequent IVIG treatments. Could Dr. K. add anything useful to the conversation, or would it create some conflict as another doctor will be leading the trial? I admittedly know nothing about applying for or structuring a trial, but how fortunate for all of our families that this opportunity came your way, as you do! It is enough to make one believe in divine providence! I'm sure you are beyond busy with all the demands of your day-to-day life, "real job," mothering PANDAS, etc. I, for one, would have to be directed very specifically and fundamentally, but if there is any assistance I might lend to any part of this process, please reach out! We might all have SO much to gain from the endeavor! Thanks!