MomWithOCDSon

Thanks, Vickie. So well said, and so timely, too. I, too, am fortunate to have health insurance through my employer, but our rates are going up 41% as of January 1, and it seems as though every day there's some new "wrinkle" in what's covered, in what manner, and to what degree. No offense to anyone here who may be in the industry, but it's really hard not to detest the insurance companies sometimes! That being said, we all want to focus on the kids, and I think we would all give the shirts off our backs to help our own. And many people here have been invaluable, not necessarily financially but in so many other ways, helping kids who are NOT their own. Although, if you adhere to the old adage "Time is money," then every one here has been very generous in a financial sense, as well! Thank you to all!

Having lived with it for many years, I would categorize this as an OCD ritual, also. It sounds akin to reassurance to me; he sort of knows the routine and is pretty sure he knows what's up and where he's headed, but he wants you to make it 100% clear so he can be "certain."

Add another here! In fact, that's one thing that finally brought our psych over to our "PANDAS party" from the "regular OCD" positioning. The emotional lability that can swing on a pendulum every few MINUTES, never mind a couple times a day! He had to finally admit this was NOT "classic waxing and waning!"

Also 2,000 i.u. per day for our DS13, 140 pounds. DH and I take 1,000 i.u. per day, in addition to a multivitamin. We live in the frozen Midwest, so winter lack of sun is definitely an issue for us.

Joan -- Just some more words of support and a cyber hug! I know our boys have quite a bit in common . . . being teenagers and dealing with substantial OCD, etc. I'm so sorry the going is so rough now, and all I can do is echo everyone else at this point. Take care of yourself, too, so that you continue to have the resources to help him as much as you can. If you were my neighbor, I'd offer to stay with him for a while so that you could get out, get some air, see a movie, take a walk, whatever helps you fill up again when you're running on empty. Maybe you have someone in your lives who can help you in that way. Tap 'em . . . that's what friends are for! Much light coming your way!

Is it the rages and anxiety, specifically, that you're looking to target? Are you considering psychiatric meds? If so, I suppose you're already aware of the Dr. Tanya Murphy/Dr. Eric Storch study about anti-anxiety meds (SSRI's) and PANDAS kids . . . in summary, that if you are going to go that direction, you need to go very low and slow with any dosages or the behaviors may actually become activated, rather than calmed. Something to keep in mind going forward with your medical professionals. I'll just add that our DS is on a low dose of Zoloft and does well with it in terms of anxiety and OCD. Also, since it seems you're trying some more holistic protocols, have you tried Valerian Root? I don't believe the brand we use has any phenols in it. It's great for calming. Also, at night, you could try Melatonin; again, I don't think ours has any phenols in it, and at 3 mg. (DS is 13 and 140 pounds), he sleeps through the night. You can get it in dosages as low as 1 mg., so you might try "low and slow" with this, too, and see how he responds. Good luck to you!

Not to, in any way, dissuade you from having the rash swabbed and checked by a professional, but I will say that our DS13 has eczema and has had it, in varying degrees, since he was about 3. Eczema is fairly common among kids who have hyper-immune issues like allergies, and our DS's increases, too, commensurate with his mental state. The more anxious or the more pronounced his OCD, the more the patches of eczema, and the longer they hang around. Also, our DS also has a patch in his groin area, extending a bit down one leg, though this is rare and it tends to show up first in the crooks of his elbows. You might try keeping your DS as dry in the effected areas as possible as that tends to irritate the condition. Change underwear frequently, make sure he's good and dry after a bath/shower before getting dressed, etc. We found using creams or ointments, especially in places like the groin that don't get a lot of air, only serves to make it worse. Roomy clothes and dry conditions seem to improve things considerably.

Our DS13 is about 140 pounds, and he takes 1200 in the a.m. and another 1200 in the p.m. He's also taking a fair amount of Vitamin C, which I understand is key to helping NAC work at its best, too.

You may very well be right, especially when abx is used at initial onset of an active infection. But I guess my curiosity lies with those of us who continue to see behavioral benefits to abx use long after the infection, and at dosages that exceed what is normally thought of as "prophylactic." Or, even if at standard prophylactic doses, still see behavioral benefits that evaporate with discontinuing of the abx, even without any evidence of fresh exposure, etc.

We've used the Jarrow brand, also, and would also vouch for its efficacy; I think it might also be less expensive per dose than FloraStor, also. In our area, though, you have to get the Jarrow at a health food or vitamin store while FloraStor you can get at almost any standard pharmacy, which is why I mentioned it by name.

We've been using it for the last year while DS has been on antibiotics. It's great, especially with respect to the fact that it can be dosed at the same time as antibiotics because the abx doesn't kill it, and because it's very effective against diarrhea that the abx can cause, too. "FloraStor" is our favorite brand, found behind the pharmacist's counter. just trying to be double sure..... i asked at herbal store i go to...they said don' t do that....i asked as i heard you can and it is very difficult to get all the supplements in during the day... giving at the same time doesn't create die-off... it doesn't waste the abx by wasting its time on probiotics as opposed the other bad bacteria.... i would really like to dose this at the same time too...just very hesitant.... I wouldn't doubt that it might be ideal to dose MANY things separately, but like you've said, there just aren't enough hours in the day. When talking probiotics, I think a lot of people get the different strains confused, and even folks you would THINK would know the difference, don't. Many years ago, during the age of ear infections with our much younger DS, the pediatrician recommended FloraStor (sach along with the amoxicillin he was taking for otitis medea . . . said yogurt and kefir are great options for kids, but that the primary culture in those -- acidolpholus -- IS killed off by antibiotics while sach b. is not. More recently, this same pediatrician recommended Culturelle (lactobacillus) because it, too, is impervious to antibiotics. Now, in full disclosure, the last two years have led me to be generally distrustful of the full, accurate body of knowledge of almost EVERY health professional, so even I am unwilling to take her word for gospel. What's led me to believe she's right this time is the last two years of our own experience. With school, odd-hour meals on weekends and holidays, etc., we've been dosing DS simultaneously with sach b., lactobacillus and a handful of other cultures (such as bifo) for more than a year, and we've seen no negative effects on the efficacy of either the abx or the probiotics. So now I believe the ped on this one! One warning, though; we've now completely OFF digestive enzymes. They CAN impact efficacy of abx and other meds and supplements, in time-release formulas. Learned that the hard way.

We have such a broad and deep expanse of experience here, I thought maybe we could do what many of our medical practitioners have not yet been able to piece together. My main line of inquiry is as follows: when antibiotics are found to be effective in fighting PANDAS (either short-term or long-term), is there some sort of "ideal marriage" of any one antibiotic, or class of antibiotic, and your child's primary symptom set? I know many people say their children have responded best to azith; others see better results with Augmentin or Augmentin XR. I've also heard of kids who's responded well to just plain old penicillin. But if we could gather some sort of experiential concensus among all of us that would help us reach for the most effective class of abx for our child FIRST, instead of second or third . . . wouldn't that be worth exploring? So, please respond to the poll and then make a post, too, to paint the picture for us. For instance: DS13 is wholly OCD in terms of behavioral manifestation. We've never tried azith because Augmentin XR has been very effective for us. Thansk!

Thanks TMom and EAMom. And not to be a broken record, but there IS potentially a fourth benefit to long-term antibiotics, at least of a certain class. There is ongoing research concerning the B-lactam class of antibiotics (of which Augmentin is a member) and their glutamate modulating characteristics. Since glutamate is now thought to be heavily involved in OCD, it seems viable that those PANDAS kids with OCD behavioral manifestations may be benefitting from this particular quality when taking Augmentin.

We've been using it for the last year while DS has been on antibiotics. It's great, especially with respect to the fact that it can be dosed at the same time as antibiotics because the abx doesn't kill it, and because it's very effective against diarrhea that the abx can cause, too. "FloraStor" is our favorite brand, found behind the pharmacist's counter.

What I can tell you is that if you were going to enter the Riluzole trial, one of the few supplements they would not allow you to continue to take is NAC (n-acetylsystein). There's lots of literature available regarding NAC and its glutamate agonist characteristics, so I'd try NAC.

Thanks, Emmalilly. If only my DS13-nearly-14 would be caught wearing one of those! A little more PANDA fun, which you might especially appreciate, Emerson. Ever played the WII Fit Plus? There's a great soccer mini-game where you're supposed to head-butt soccer balls fired at you by your team mates; the more balls you lean into properly and butt, the more points you get. Mixed in with all the balls, though, are two obstacles you're supposed to avoid or they take points away from you, and they're soccer ball colored and patterned to trick you. Can you guess what they are? 1) A soccer cleat; and 2) a stuffed panda bear head !

I think these "sobbing sessions" followed by "feeling fine" are part of the emotional lability profile that can come with PANDAS. I can only speak from our experience and say that there were points in time, especially early on, that DS appeared to go on a crying jag for no reason. This was especially true when he was younger (he's now just shy of 14). What we came to understand as he got older was that it wasn't actually for "no reason;" rather, it was for a reason he couldn't yet articulate. Our DS was tormented by OCD thoughts long before we knew he had PANDAS or PANDAS OCD, and when he would get overwhelmed by them, he'd go on a sobbing jag. I think some kids rage, but ours would sob. We'd ask him what was wrong and try to ferret out all sorts of possible rational reasons behind the "sadness," but every query was met with a "no," yet he couldn't stop. And then, just as inexplicably, he would turn on a dime, stop, and, as you've put it, be "perfectly fine." For us, that is the neverending frustration of the OCD; it is entirely irrational and, in many ways, unpredictable, and what sets him spinning one minute is over the next. As he's gotten older, 1) we've gotten more savvy to the ways of the OCD and are better prepared to identify when it lies behind a behavior, and 2) he's gotten more savvy to the OCD, as well, and more articulate about why he's being suddenly set off. Don't know if OCD is behind your son's crying jags, but it seems possible, especially if OCD behaviors are part of his PANDAS profile.

I would echo Kimballout. Though some might feel strongly about having PANDAS specifically designated in the paperwork as opposed to any one of the multitude of other labels that are more commonly used for PANDAS behavioral manifestations (like ADD, ADHD, OCD, etc.), if your child's needs can be met through accommodations tied to one or more of these more readily accepted labels, doing battle with the school over the terminology may not be the best expense of your time or energy. The term "PANDAS" isn't necessarily all that meaningful on the paperwork anyway unless it is accompanied by a full understanding of what the condition is and the behavioral manifestations that come with it. In the end, the only accommodation that I can think of that would be specific solely to PANDAS and could not be covered under one of the other terms might be immediate notification of potential strep exposure in the classroom. But as Kimballout said, if your child has other PANDAS needs that don't neatly fit with a strictly ADHD diagnosis, then you're going to have to do some battle, anyway. In that case, I'd think it would be worthwhile to get the PANDAS diagnosis clearly "on the books" so that if you, at any point in time, need to relocate the 504 to a different school or you're ready to move it on up the school "food chain" to junior high and/or high school, you have the PANDAS and all that can come along with it in the file, on the record, and available for the crafting of any future accommodations if need be. Good luck!

Yes, I just got home from work and double-checked our bottle of enzymes, as well. We were giving DS "DigestMore" by Renew Life, on top of which, I was dosing him at meal time, right alongside his Augmentin XR! Sure enough, this supplement includes 250 CUs of cellulase, alongside the other five enzymes in it. Wow! I so frequently feel as though I'm chasing after "cause and effect" with this PANDAS stuff without any real, final validation for it, this is really making my day, I must say! Thanks again, Mama2Alex for the link! More proof (as though we needed it), that it does indeed "take a village!" And another validation for keeping a journal, too. Some nuances become magnified when you can track a pattern over a period of time, and without a journal, I don't think I would've made this connection at all.

Thanks for the link! Since we have our DS on XR (a time-released Augmentin), I found this section particularly interesting: There is one caution with time-released medications and the specific enzyme cellulase. Some time-released medicines or supplements use cellulose to slow down the digestion and release of the product. Not all do. Cellulose is virtually indigestible in humans since people do not produce that enzyme internally natually. If you take an enzyme product with cellulase (the enzyme that breaks down cellulose), the cellulase may break down the cellulose in the medication and mess up the time-release design. Maybe that explains the "bump" we've documented! I'll have to check the enzymes I have and see if ceullulase is among its components. Thanks again!

A couple of months ago, when DS13 began to complain of tummy trouble (he's still taking abx), I decided to try adding digestive enzymes to his supplements, along with the probiotics he's already taking. I do think the enzymes have assisted his digestion, but in looking back through our journal, I'm beginning to think that they may have interfered with the effectiveness of the abx, also. He hit a behavioral bump, and we thought he'd been either re-exposed to strep or perhaps was responding to a norovirus that was running around school and in our home (unfortunately). But then, just on intuition, I decided to cease the use of the enzymes last week, and he's been on an upswing ever since. So I'm beginning to wonder if the enzymes were somehow suppressing or negating the abx. Anyone else have a similar or contrary experience? Thanks!

Interesting. I think more of us should post comments, especially in the face of someone like this "David White" who appears to, perhaps, attempting to profit off OCD misery.

Thanks for a GREAT idea, Emmalilly! My DS certainly does have to work harder at getting through more difficult school reading when he's in exacerbation, so this tip is much appreciated.

Way to go, LLM! Persistence, resilience and resourcefullness will eventually triumph, and you've put all of those to good use for your DS! And just to pile on here for good measure . . . writing samples seemed to "flip the light switch" for our DS this year, too, when we met with his teaching team at the top of the year. And then again at his IEP update meeting. I guess many adults aren't all that different from kids when it comes to the old addage, "A picture is worth 1,000 words!" So, hang on to those writing samples, everyone! They really are powerful tools of persuasion!

We give Sach B. twice each day. You might start with once and see how much that helps, since certainly every kid's gut is different.