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strep other than in the throat


sww817
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So we are still unsure if we are true PANDAS/PITANDS as opposed to pure ocd and anxiety. Our last episode was Feb 2011 brought on by flu and bronchitis. Dr. L had him on antibiotics and we pulled tonsils and adenoids over the summer. Off antibiotics since mid-July. This week he complained of stomach ache and sore throat Monday morning but then said he felt fine. Behavior has just been off ever since and I don't know if I am over-analyzing. I found out yesterday that a child in another class (same grade) had strep so he COULD have been exposed.

 

So my question - I took him to the dr yesterday and they did a throat culture and we are waiting on that. But IF he does not show a positive throat culture, can it still be strep in the body somewhere else? His behaviors are just becoming more odd. Of course, bad weather and little exercise is not helping but it still is out of character somewhat.

 

Thanks for any input. I used to be much more up to speed on all of this until I thought we were non-PITANDS. My brain has turned to mush!

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Strep can be in so many places. Strep throat, sinuses, ear infections, strep in the gut, strep on the skin (impetigo). So, just becasue a throat rapid and/or does not come back positive, it does not necessarily mean the child is strep free.

 

Also, if strep was in the class, it still can be in the class and he can still be exposed. It may take a good 5 days for it to run its course throughout the room. Luckily, it's Friday and he won't be exposed over the weekend.

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Thanks for the responses.

 

eljomom- the flu / bronchitis was not his initial episode. Initial episode was thought to be strep plus we think we missed the strep that came before the flu this past time (because Daddy did have strep). T&A was performed because of chronic sinusitis and we made the call to do tonsils because of possibility. Deep cultures were negative but biofilms were found. So I am still onboard that pulling t&a was the right decision.

 

My son definitely responds to any illness- does not have to be strep. That is why we are still not sure we are even PANDAS or PITANDS. OCD and anxiety are normally increased with illness as well. The oddities here in addition to those are added hyperactivity, occasional bedwetting for an extrelmely dry child, cussing, and hair twirling.

 

 

 

OR it can just be from something other than strep! I know Dr. L likes to shoot for the strep...that sort of seems to be her focus, in my opinion. Your initial episode was from flu and bronchitis....yet T&A was still recommended. This is what I don't get....

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OCD and anxiety are normally increased with illness as well.

 

 

Just to play devil's advocate here . . . what if the standard "wisdom" regarding OCD and anxiety is more accurately described as "mythology"? What if OCD and anxiety are increased because of the inflammation frequently accompanying illness? Or the excess glutamate that either accompanies the inflammation or is at the root of it? What if the "wax and wane" commonly described of OCD is actually the brain's and body's response to exposure to microbes or other agents (allergens) that contribute to inflammation, exacerbating the symptomology?

 

My son's currently reading some Greek mythology in his English class, and so of late, when I read or hear one of these sorts of "platitudes" about OCD or anxiety, I can't help but be reminded of how the Greeks invented Zeus to explain the natural pheonomenon of thunderstorms, and Posiedon for storms at sea, and Persephone's descent into the Underworld to explain the changing of the seasons. "OCD increases with illness." "OCD waxes and wanes of its own accord." So much easier to just say, "Stuff happens!" and "There's a pill for that!" than to spend the resources to dig down to the "why." Now we think the Greeks were, on their best day, imaginative and, on their worst, incredibly ignorant. I am certain that within 50 years, the civilized world is going to feel the same way about the manner in which our generation is dealing with "mental illness."

 

My son was diagnosed with OCD and anxiety at 6. I asked about the possibility of PANDAS then and was completely waved off . . . it was "controversial," possibly entirely non-existent, the OCD would still require standard OCD responses (therapy and possibly SSRIs), and DS had not had strep (that we had discerned, anyway). At 7 his OCD fairly suddenly (within a period of about 2 weeks) went off the charts, and I asked about PANDAS again and even connived a strep swab out of our pediatrician; the culture came back negative, neither the ped nor the therapist would even entertain PANDAS, and with a negative culture, I figured I was out of options at the time. So we allowed DS to be put on an SSRI. And then at 12, he fell off the edge of the planet again with OCD and anxiety; he became homebound, depressed, completely nonfunctional, despite ongoing therapy and SSRIs, plus the added "heavy-hitter" psych meds he needed just to get a few hours of sleep or take the necessary steps to leave the house to make another doctor's appointment.

 

And then I stumbled across "Saving Sammy," heckled a hospital psychiatrist until she agreed to order the ASO and AntiDnase B blood tests, and took the results along with a copy of the book (his titers were 5 times the high end of the lab's normal range at the time) to our ped and begged for antibiotics. Within 3 days of starting Augmentin, for the first time in nearly 6 months, my son came down and ate dinner at the dinner table. Within a week he would take a shower by himself again. Within 6 weeks, he was working his way back into school one class at a time. The antibiotics accomplished what none of the other "standard OCD/anxiety" interventions did. He still suffers from a low level of anxiety and OCD today, but he's a freshman in high school, attending school daily, taking all honors and AP courses, laughing, learning, sleeping, eating and enjoying his life overall.

 

Now some fairly basic web research will turn up antibiotics (d-cycloserine) being used in conjunction with CBT for combatting OCD. Ibuprofen has been found to alleviate the severity of some OCD symptoms. And antibiotics are being studied for their positive impacts on autism and Alzheimers. And glutamate-modulating substances (in which class beta-lactam antibiotics such as Augmentin are also thought to belong) are being tested for their efficacy in everything from schizophrenia to bipolar to Alzheimer's to MS to OCD.

 

My family lived with "regular OCD" for 6 years before discovering PANDAS and finally getting the kind of help my son really needed. So now, personally, I don't believe there's any such thing as "regular OCD" anymore. The term "OCD," like "autism," is merely a description of a set of behaviors; it's not a true diagnosis with medically or scientifically determined origins. It's a convenient label that signals the end of the line for the medical doctor and a quick referral to a therapist or psychiatrist for your child, but that doesn't make it right or, at this point in time with all the emerging evidence and research, even ethical. It probably does take a combination of genetics (after all, much of immunity is genetic), environment and trigger to result in any of these "conditions," but that doesn't mean it's some unknowable, medically untreatable phenomenon.

 

I'd love to see a trial in which a full contingent of "regular OCD" children and adults are given antibiotics and/or anti-inflammatory therapy and track the results. I'd lay odds that everyone, irrespective of how long they've suffered prior or what, if any, pattern of illness is present, would enjoy some benefits.

 

Sorry . . . I'm on a soapbox today for some reason. I guess your rather innocent statement hit a nerve. ;)

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My family lived with "regular OCD" for 6 years before discovering PANDAS and finally getting the kind of help my son really needed. So now, personally, I don't believe there's any such thing as "regular OCD" anymore. The term "OCD," like "autism," is merely a description of a set of behaviors; it's not a true diagnosis with medically or scientifically determined origins. It's a convenient label that signals the end of the line for the medical doctor and a quick referral to a therapist or psychiatrist for your child, but that doesn't make it right or, at this point in time with all the emerging evidence and research, even ethical. It probably does take a combination of genetics (after all, much of immunity is genetic), environment and trigger to result in any of these "conditions," but that doesn't mean it's some unknowable, medically untreatable phenomenon.

 

I'd love to see a trial in which a full contingent of "regular OCD" children and adults are given antibiotics and/or anti-inflammatory therapy and track the results. I'd lay odds that everyone, irrespective of how long they've suffered prior or what, if any, pattern of illness is present, would enjoy some benefits.

 

 

Yup! I'm there too!

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MomWithOCDSon- I appreciate your reply and I certainly did not want to strike a chord. I actually agree with everything you said. My son has just been a hard case. On paper, you would see his history and say PANDAS. Period- no questions asked. But then after digging further it gets questionable.

 

Original 2009 episode and meeting with Dr. L was diagnosed PANDAS. But he did not respond dramatically to antibiotics and steroids. So she said- not PANDAS. Then he was healthy (and symptoms under control with low dose SSRI) until late 2010 when we saw changes again. Allergist thought PANDAS and we consulted with Dr. T and went back to Dr. L. Both think he is likely PANDAS or more specifically PITANDS or PANDAX or whatever you want to call it. Strep does not have to be the culprit at all with us!

 

I think we have always been behind the curve which is why I have questioned the diagnosis- so a post like yours, this board, going back through my notes always helps me reinvent the wheel and come back to reality.

 

My son defininetly has baseline OCD and anxiety that is present when he is healthy. That makes sense to me because I had it as a child as well. But this is very manageable with low dose SSRI on a daily basis. Any illness will send him into a tailspin. We have always been coming out of the episode by the time we got antibiotics which is probably why I doubted the diagnosis and why we did not have dramatic results.

 

The other reason I have been confused was a cam score of 94. That is not in PANDAS range? Although he was not in full blown exacerbation. Titers have always been low. This past year they had multiplied but were well below range? Myco P. negative. Lyme negative. Just very confusing.

 

I will say that in an episode Motrin helps noticably which is a sign that there is something going on with inflamation. And we do not have a culture result this time but we have started antibiotics. So hopefully we are heading off this episode. He does seem better after 2 low doeses and then being bumped up to the higher does for two doses. I think only time will tell.

 

Of course, I do wonder what the treatment course should be for a virus like the flu? That is what sent him into tailspin last time. There are just so many questions!

 

Again, thanks for the reply and sorry if you took my comment the wrong way. I definitely value the knowledge on this board. I may still be confused but I can only imagine how lost I would be without it!

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MomWithOCDSon- I appreciate your reply and I certainly did not want to strike a chord.

 

Striking a chord is okay! :D You gave me an opportunity for some catharsis! ;)

 

My son defininetly has baseline OCD and anxiety that is present when he is healthy. That makes sense to me because I had it as a child as well. But this is very manageable with low dose SSRI on a daily basis.

 

Yes, mine too. Maybe that's why your post struck such an instant chord for me . . . . because I've been where you are! I've doubted, too. So much so that we waffled on treatment for a while -- using antibiotics, thinking they'd done all they could do, then seeing a decline and going back on the abx, hitting another plateau and repeating the cycle again. But as time goes on and we've now stuck with our treatment protocol for an extended period, plus the science continues to evolve and there's more and more information out there, almost daily, I'm just getting increasingly impatient with the "standard wisdom" that gets thrown out there about OCD. And I know that's what you've been inundated with, too, just as we have been because I've said the same things in the past, echoing the professionals and caregivers in the field.

 

Again, thanks for the reply and sorry if you took my comment the wrong way. I definitely value the knowledge on this board. I may still be confused but I can only imagine how lost I would be without it!

 

I'm a little fiesty ( ;) ), but I didn't take it in the "wrong way." I just recognized a fellow traveler on this road, and I didn't want you to give up, to surrender to the "classical answers" about your son's condition that, however well intentioned, don't, in our experience, tell the whole story. My DS does well on a low-dose SSRI, also, and, unlike many families here who's children's underlying PANDAS/PITANDS infections were caught early and quickly, I'll be thrilled if my DS can completely shake his OCD and anxiety, but I'm not convinced that it can ever happen for him 100%. But he's fulfilling my dreams for his Best Life now by being happy and productive and sufficiently solid emotionally and mentally to fit in reasonably well with other boys his age and therefore have a decent social life. And continuing to have low-level anxiety and/or OCD, in my opinion, doesn't mean that the root of that isn't still auto-immune or inflammatory; it just means that it's become so systemic or "innate" that, either physically or behaviorally, the person is now "programmed" to respond in that way. But that doesn't mean he/she can't be helped, especially during times of illness, by medical (rather than merely psychiatric or psychological) interventions.

 

Thanks for letting me get that off my chest! :P

Edited by MomWithOCDSon
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OCD and anxiety are normally increased with illness as well.

 

 

Just to play devil's advocate here . . . what if the standard "wisdom" regarding OCD and anxiety is more accurately described as "mythology"? What if OCD and anxiety are increased because of the inflammation frequently accompanying illness? Or the excess glutamate that either accompanies the inflammation or is at the root of it? What if the "wax and wane" commonly described of OCD is actually the brain's and body's response to exposure to microbes or other agents (allergens) that contribute to inflammation, exacerbating the symptomology?

 

My son's currently reading some Greek mythology in his English class, and so of late, when I read or hear one of these sorts of "platitudes" about OCD or anxiety, I can't help but be reminded of how the Greeks invented Zeus to explain the natural pheonomenon of thunderstorms, and Posiedon for storms at sea, and Persephone's descent into the Underworld to explain the changing of the seasons. "OCD increases with illness." "OCD waxes and wanes of its own accord." So much easier to just say, "Stuff happens!" and "There's a pill for that!" than to spend the resources to dig down to the "why." Now we think the Greeks were, on their best day, imaginative and, on their worst, incredibly ignorant. I am certain that within 50 years, the civilized world is going to feel the same way about the manner in which our generation is dealing with "mental illness."

 

My son was diagnosed with OCD and anxiety at 6. I asked about the possibility of PANDAS then and was completely waved off . . . it was "controversial," possibly entirely non-existent, the OCD would still require standard OCD responses (therapy and possibly SSRIs), and DS had not had strep (that we had discerned, anyway). At 7 his OCD fairly suddenly (within a period of about 2 weeks) went off the charts, and I asked about PANDAS again and even connived a strep swab out of our pediatrician; the culture came back negative, neither the ped nor the therapist would even entertain PANDAS, and with a negative culture, I figured I was out of options at the time. So we allowed DS to be put on an SSRI. And then at 12, he fell off the edge of the planet again with OCD and anxiety; he became homebound, depressed, completely nonfunctional, despite ongoing therapy and SSRIs, plus the added "heavy-hitter" psych meds he needed just to get a few hours of sleep or take the necessary steps to leave the house to make another doctor's appointment.

 

And then I stumbled across "Saving Sammy," heckled a hospital psychiatrist until she agreed to order the ASO and AntiDnase B blood tests, and took the results along with a copy of the book (his titers were 5 times the high end of the lab's normal range at the time) to our ped and begged for antibiotics. Within 3 days of starting Augmentin, for the first time in nearly 6 months, my son came down and ate dinner at the dinner table. Within a week he would take a shower by himself again. Within 6 weeks, he was working his way back into school one class at a time. The antibiotics accomplished what none of the other "standard OCD/anxiety" interventions did. He still suffers from a low level of anxiety and OCD today, but he's a freshman in high school, attending school daily, taking all honors and AP courses, laughing, learning, sleeping, eating and enjoying his life overall.

 

Now some fairly basic web research will turn up antibiotics (d-cycloserine) being used in conjunction with CBT for combatting OCD. Ibuprofen has been found to alleviate the severity of some OCD symptoms. And antibiotics are being studied for their positive impacts on autism and Alzheimers. And glutamate-modulating substances (in which class beta-lactam antibiotics such as Augmentin are also thought to belong) are being tested for their efficacy in everything from schizophrenia to bipolar to Alzheimer's to MS to OCD.

 

My family lived with "regular OCD" for 6 years before discovering PANDAS and finally getting the kind of help my son really needed. So now, personally, I don't believe there's any such thing as "regular OCD" anymore. The term "OCD," like "autism," is merely a description of a set of behaviors; it's not a true diagnosis with medically or scientifically determined origins. It's a convenient label that signals the end of the line for the medical doctor and a quick referral to a therapist or psychiatrist for your child, but that doesn't make it right or, at this point in time with all the emerging evidence and research, even ethical. It probably does take a combination of genetics (after all, much of immunity is genetic), environment and trigger to result in any of these "conditions," but that doesn't mean it's some unknowable, medically untreatable phenomenon.

 

I'd love to see a trial in which a full contingent of "regular OCD" children and adults are given antibiotics and/or anti-inflammatory therapy and track the results. I'd lay odds that everyone, irrespective of how long they've suffered prior or what, if any, pattern of illness is present, would enjoy some benefits.

 

Sorry . . . I'm on a soapbox today for some reason. I guess your rather innocent statement hit a nerve. ;)

 

Thank you for that post! I found that very hopeful and helpful!

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MomWithOCDSon-

I was thinking over the similarities between our boys based on your story. I was wondering a few things. I assume he was not on abx since no positive culture after his exacerbation at 7? Did he ever get sick in the years between that and the bad one at age 12? And then at 12 did he go on continuous abx? What about ivig?

 

Sorry. Lots of questions. I do thnk my son needs to stay on abx although we battle horrible yeast issues with him. But then I also worry about things like the flu that cause episodes as well.

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MomWithOCDSon-

I was thinking over the similarities between our boys based on your story. I was wondering a few things. I assume he was not on abx since no positive culture after his exacerbation at 7? Did he ever get sick in the years between that and the bad one at age 12? And then at 12 did he go on continuous abx? What about ivig?

 

Sorry. Lots of questions. I do thnk my son needs to stay on abx although we battle horrible yeast issues with him. But then I also worry about things like the flu that cause episodes as well.

 

Lots of questions? S'okay! No problem . . . I'm a "talker!" ;)

 

No, my DS did not go on abx at his second major exacerbation at age 7. My DS is "hyper-immune;" he rarely gets classically ill, and he has significant environmental (dust, mold, pollen, cat dander) allergies, which is also a hyper-immune response. In hindsight, we are hypothesizing that his auto-immune response to strep began back when he was a toddler and suffering from constant, recurrent ear infections. From the time I stopped nursing him at about 14 months until we finally submitted to having "tubes" put in his eardrums to facilitate drainage, he had one ear infection after another. And, of course, they were all met with 10-day courses of antibiotics which probably only served to strengthen the bacteria that lurked about. But once we got the tubes, beyond allergies, he's always been exceedingly physically healthy. In fact, we'd get a note home from his grade school saying that a case of strep had been identified in his class and we should keep an eye on him, but he'd never come down with it; instead, he'd "carry it" passively and pass it on to his dad or me, and we'd come down with a classic, raging sore throat case.

 

It took us about 6 months to bring him out of the "extreme episode" he had at age 7 . . . lots of therapy, TLC and a low-dose SSRI (at the time, lexapro). Then, honestly, he was FINE until the episode in May 2009, at the age of 12! Again, he still had these "quirks" and "eccentricities" that we attributed to the OCD, but the remission was so complete and beautiful that you would not have known him from any other kid his age. The separation anxiety, compulsions, rituals, distraction, emotional lability all disappeared, even without abx. I'm guessing that, at that point, his immune "load" was still somewhat manageable for him, so he recouped and recovered sufficiently in that 6 months.

 

But the crisis at age 12 beat everything we'd ever seen before, and then some. And yes, once we found PANDAS, he did go on abx continuously, with the exception of a couple of short periods where we tried to remove them; but he would regress again (always within 8 to 10 days of having ceased or even significantly reduced the dosage), so we'd put him back on. So, for the most part, he's been on abx for about 2 years now and has steadily improved overall during that time. We have recently been in the process of reducing once again and, thus far (knock on wood), he seems to be holding his own this time without any noticable, consistent regression. Only time will tell, though.

 

We had a consultation with Dr. K. and have considered IVIG, but we've decided it is not for us, at least at this juncture. Since DS is hyper-immune and has no measurable deficiencies, we would not be likely to be able to get insurance to cover it; furthermore, since many families find themselves doing more than one IVIG over a period of time, and I've recently read in a few posts that doctors are now advising that it can take as much as a year following IVIG for the full positive impacts to become manifest, I'm not convinced that IVIG would have any more efficacy, or work with any greater speed, in our case than the abx appear to. The abx have been very beneficial for our DS, and we have not had any negative side effects (yeast, gastro distress, etc.), especially since we've honed in on the best probiotic balance for him.

 

And also "out there," figuring into our decision-making, is that pentultimate example of Sammy Maloney who, in far more distress than our DS has ever been, undertook several years of antibiotics, no IVIG, no pex, and appears to have weathered the storm with flying colors. The other coincidences between Sammy and our DS (12 years of age at major decline, classically asymptomatic for strep, math prodigies outside of exacerbation) have loomed large as we go down this path.

 

So, if DS were to stop responding to abx or suffer another severe decline despite them, would we consider IVIG? Of course. NOTHING is off the table. But if DS can continue to gain ground and then hold his own, with abx and hopefully, eventually (like Sammy), without them, then that's the road we plan to take. I will say, though, that I'm looking forward to some results from NIMH's current IVIG trial since I know many families have been helped greatly by that method. The array of PANDAS/PITANDS cases is so broad in terms of age at onset, speed of onset, pace of decline, immunity status, triggers, etc., I HAVE to believe that there is something other than randomness behind those that respond to abx versus those that respond to IVIG versus those that respond to pex, etc. I'm waiting with baited breath for our great dox and researchers to figure that out!

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Dr T told us strep can be in the cavity around your organs or go intra-cellular. He has an abx combo to blast it out, and not amoxaxillan. Throat cultures are only at best 50% accurate. Thats why the ASO and DNase tieirs are taken so often to look at the antibodies to strep. Actually you want to ee the change in those numbers, rising or falling, not so much the numbers themselves.

 

Our daughter is stuck on her OCD and anxiety. We are trying psychatric meds and CBT now while waiting on more testing (yeast in stomach) and trying to figure out how to get the lyme bartonella test done. We did an ivig in may thru NIH and it helped alot, but only for 3 weeks. So we will have to decide if we want to try another too.

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