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there was a mention on another thread that kids on abx can/may test negative to strep but still be having an active infection. i couldn't find it so am not sure i am saying it right. i don't understand this.

 

what do you then do? can you assume an active strep infection isn't the problem and something else has triggered either an immune reaction or opening of the BBB? does that mean strep could be hiding out somewhere and you should actively go after it?

 

how do you treat? throw everything at it - higher abx, ibuprofen, steroids and hope something works?

 

if you see results by ibuprofen - i think judging by improvement and then 'wearing off' at the appropriate time (so can you draw the conclusion you'd see that also with steroids?) - can you assume it's more of a brain inflammation problem and could have other triggers than the strep bacteria?

 

my head is spinning - can anyone enlighten me? i'm not even sure my words are making sense!

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if you see results by ibuprofen - i think judging by improvement and then 'wearing off' at the appropriate time (so can you draw the conclusion you'd see that also with steroids?) - can you assume it's more of a brain inflammation problem and could have other triggers than the strep bacteria?

 

This is actually a good question, smarty. .... It makes me wonder now if antibody response the only thing that can cause inflammation? are there other 'causes' of brain inflammation for those of us that are not really dealing with strep infections presently? I know the reason many naturopathic health practitioners believe in fish oil, as it is helpful in reducing inflammation (wether that is specific to brain or just the whole body in general, I'm not sure). (altho for us and many, fish oil seems to increase tics, so not sure what that indicates).

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there was a mention on another thread that kids on abx can/may test negative to strep but still be having an active infection. i couldn't find it so am not sure i am saying it right. i don't understand this.

 

what do you then do? can you assume an active strep infection isn't the problem and something else has triggered either an immune reaction or opening of the BBB? does that mean strep could be hiding out somewhere and you should actively go after it?

 

how do you treat? throw everything at it - higher abx, ibuprofen, steroids and hope something works?

 

if you see results by ibuprofen - i think judging by improvement and then 'wearing off' at the appropriate time (so can you draw the conclusion you'd see that also with steroids?) - can you assume it's more of a brain inflammation problem and could have other triggers than the strep bacteria?

 

my head is spinning - can anyone enlighten me? i'm not even sure my words are making sense!

Strep is not the only thing that triggers the symptoms with my son- any infection, viral and bacterial infections.

The strep can also be somewhere other than the troat- I am assuming that your strep test is a throat swab. (it can be in the sinus, intestines, skin, vagina, ect.)

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I look forward to a response from others too. I've been on this health journey for a year now with my daughter who is 8 and a half. She has a waxing and waning of "tics" -- still, unsure what to call them. When they appeared full-blown, she had a negative throat culture. Until then, I'd never heard of PANDAS or even knew strep could cause these things. After a couple months, a neurologist who we couldn't get in to see right away (b/c I wasn't fast-tracked by my pediatrician) prescribed an antibiotic as he wanted to be sure that IF it was strep causing the tics, that it didn't go to her heart. The day after finishing the round of antibiotics, my daughter complained of a sore throat which turned out to be positive strep -- remarkable b/c up to this point she'd never had one. She was given a higher dose of antibiotics and by day 2 the tics were gone. They stayed away for a few months. Everyone I've talked to said that this was a fluke b/c she didn't have the positive throat culture the week before she started the antibiotics. They insist strep will only colonize in the throat. This includes my pediatrician, an infectious disease specialist at Boston Children's and the neurologist who specializes in tic and movement disorders at Children's. Meanwhile, her tics, although mild, have returned and no doctor will give antibiotics without a positive throat culture. I'm convinced there is something bacterial going on, but getting someone to help me find it has been difficult. Just last week I emailed Dr. Cunningham who, as you may know, is doing research as to what's happening in the brain in relation to PANDAS. If my doctors aren't willing to take it upon themselves to find out what is causing all this (they tell me not to worry, tics come and go in kids), I want to request specific tests to be able to rule out strep as the cause. She told me to have her throat, stool and vagina tested for streps A, B, C and G -- who even knew there were so many?? It is my hunch doctors don't check for all. I hope this helps you (although I know it isn't the info you're looking for) as it sounded like you may be headed down the same frustrating path I'm on with my daughter who doesn't have positive cultures from her throat and doesn't fall into a PANDAS diagnosis without the positive throat cultures.

 

Sidenote: Over the last year, I learned about functional medicine, doctors who look at the body as an interconnected system. We had all kinds of tests done (hormones, toxicity, etc.) My daughter, who has a peanut allergy and been to Boston Children's twice to be seen by an allergy specialist there never did IGg testing on her. The functional medicine doc did and the results showed high for gluten and dairy intolerance. My understanding is that although the intolerance may not be the cause of what's going on, it is possible that the body is working so hard on a daily basis to fight what it recognizes as toxic that when it needs to fight real sickness, the body goes into overdrive to fight and sends the nervous system out of whack. It has made me wonder what the correlation could be with kids who have PANDAS and other immune failure in the system with things like with food allergies. But that's another discussion thread..... I mention all this as I wonder if it would be worthwhile for you to explore functional medicine. http://www.functionalmedicine.org/about/whatis.asp I started with Dr. Hyman's book, The UltraMind Solution, which explains why and how we need to bring the body to optimal physical health for neurological and psychological health. That they are intimately related.

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Oh goodness,

 

Of course strep can colonize elsewhere than the throat. Impetigo is one such condition, Intertrigo is another. http://pediatrics.aappublications.org/cgi/reprint/112/6/1427

 

Erysipelas is yet another, and of course the great atopic dermatitis. Let me know if you really need references as this is classic red-book material.

 

In terms of the exacerbations due to viral or other bacteria infections. There are three explanations I have heard:

  1. The anti-neuronal antibodies are still in the blood stream and the viral/bacterial infection is just causing further inflammation of the BBB causing leaking of the pre-existing anti-neuronal antibodies (i.e., its been < 6 weeks since GABHS exposure).
  2. There still remains some strep in the system (perhaps intracellular) and this keeps the antibodies active
  3. There is something superantigen from the viral/bacterial infection having nothing to do with strep causing antibody proliferation

#1 and #2 make the most sense to me.

 

Buster

 

I look forward to a response from others too. I've been on this health journey for a year now with my daughter who is 8 and a half. She has a waxing and waning of "tics" -- still, unsure what to call them. When they appeared full-blown, she had a negative throat culture. Until then, I'd never heard of PANDAS or even knew strep could cause these things. After a couple months, a neurologist who we couldn't get in to see right away (b/c I wasn't fast-tracked by my pediatrician) prescribed an antibiotic as he wanted to be sure that IF it was strep causing the tics, that it didn't go to her heart. The day after finishing the round of antibiotics, my daughter complained of a sore throat which turned out to be positive strep -- remarkable b/c up to this point she'd never had one. She was given a higher dose of antibiotics and by day 2 the tics were gone. They stayed away for a few months. Everyone I've talked to said that this was a fluke b/c she didn't have the positive throat culture the week before she started the antibiotics. They insist strep will only colonize in the throat. This includes my pediatrician, an infectious disease specialist at Boston Children's and the neurologist who specializes in tic and movement disorders at Children's. Meanwhile, her tics, although mild, have returned and no doctor will give antibiotics without a positive throat culture. I'm convinced there is something bacterial going on, but getting someone to help me find it has been difficult. Just last week I emailed Dr. Cunningham who, as you may know, is doing research as to what's happening in the brain in relation to PANDAS. If my doctors aren't willing to take it upon themselves to find out what is causing all this (they tell me not to worry, tics come and go in kids), I want to request specific tests to be able to rule out strep as the cause. She told me to have her throat, stool and vagina tested for streps A, B, C and G -- who even knew there were so many?? It is my hunch doctors don't check for all. I hope this helps you (although I know it isn't the info you're looking for) as it sounded like you may be headed down the same frustrating path I'm on with my daughter who doesn't have positive cultures from her throat and doesn't fall into a PANDAS diagnosis without the positive throat cultures.

 

Sidenote: Over the last year, I learned about functional medicine, doctors who look at the body as an interconnected system. We had all kinds of tests done (hormones, toxicity, etc.) My daughter, who has a peanut allergy and been to Boston Children's twice to be seen by an allergy specialist there never did IGg testing on her. The functional medicine doc did and the results showed high for gluten and dairy intolerance. My understanding is that although the intolerance may not be the cause of what's going on, it is possible that the body is working so hard on a daily basis to fight what it recognizes as toxic that when it needs to fight real sickness, the body goes into overdrive to fight and sends the nervous system out of whack. It has made me wonder what the correlation could be with kids who have PANDAS and other immune failure in the system with things like with food allergies. But that's another discussion thread..... I mention all this as I wonder if it would be worthwhile for you to explore functional medicine. http://www.functionalmedicine.org/about/whatis.asp I started with Dr. Hyman's book, The UltraMind Solution, which explains why and how we need to bring the body to optimal physical health for neurological and psychological health. That they are intimately related.

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In regards to a viral reaction or even to a vaccine or allergy, I think I remember you once explaining that every time the immune system kicks in, some of those bad strep antibodies are released too. I understood (or misunderstood) that was the case even though the strep was erradicated.

 

In other words, just because your child has a reaction to a virus does not mean they have active strep hiding somewhere.

 

 

Oh goodness,

 

Of course strep can colonize elsewhere than the throat. Impetigo is one such condition, Intertrigo is another. http://pediatrics.aappublications.org/cgi/reprint/112/6/1427

 

Erysipelas is yet another, and of course the great atopic dermatitis. Let me know if you really need references as this is classic red-book material.

 

In terms of the exacerbations due to viral or other bacteria infections. There are three explanations I have heard:

  1. The anti-neuronal antibodies are still in the blood stream and the viral/bacterial infection is just causing further inflammation of the BBB causing leaking of the pre-existing anti-neuronal antibodies (i.e., its been < 6 weeks since GABHS exposure).
  2. There still remains some strep in the system (perhaps intracellular) and this keeps the antibodies active
  3. There is something superantigen from the viral/bacterial infection having nothing to do with strep causing antibody proliferation

#1 and #2 make the most sense to me.

 

Buster

 

I look forward to a response from others too. I've been on this health journey for a year now with my daughter who is 8 and a half. She has a waxing and waning of "tics" -- still, unsure what to call them. When they appeared full-blown, she had a negative throat culture. Until then, I'd never heard of PANDAS or even knew strep could cause these things. After a couple months, a neurologist who we couldn't get in to see right away (b/c I wasn't fast-tracked by my pediatrician) prescribed an antibiotic as he wanted to be sure that IF it was strep causing the tics, that it didn't go to her heart. The day after finishing the round of antibiotics, my daughter complained of a sore throat which turned out to be positive strep -- remarkable b/c up to this point she'd never had one. She was given a higher dose of antibiotics and by day 2 the tics were gone. They stayed away for a few months. Everyone I've talked to said that this was a fluke b/c she didn't have the positive throat culture the week before she started the antibiotics. They insist strep will only colonize in the throat. This includes my pediatrician, an infectious disease specialist at Boston Children's and the neurologist who specializes in tic and movement disorders at Children's. Meanwhile, her tics, although mild, have returned and no doctor will give antibiotics without a positive throat culture. I'm convinced there is something bacterial going on, but getting someone to help me find it has been difficult. Just last week I emailed Dr. Cunningham who, as you may know, is doing research as to what's happening in the brain in relation to PANDAS. If my doctors aren't willing to take it upon themselves to find out what is causing all this (they tell me not to worry, tics come and go in kids), I want to request specific tests to be able to rule out strep as the cause. She told me to have her throat, stool and vagina tested for streps A, B, C and G -- who even knew there were so many?? It is my hunch doctors don't check for all. I hope this helps you (although I know it isn't the info you're looking for) as it sounded like you may be headed down the same frustrating path I'm on with my daughter who doesn't have positive cultures from her throat and doesn't fall into a PANDAS diagnosis without the positive throat cultures.

 

Sidenote: Over the last year, I learned about functional medicine, doctors who look at the body as an interconnected system. We had all kinds of tests done (hormones, toxicity, etc.) My daughter, who has a peanut allergy and been to Boston Children's twice to be seen by an allergy specialist there never did IGg testing on her. The functional medicine doc did and the results showed high for gluten and dairy intolerance. My understanding is that although the intolerance may not be the cause of what's going on, it is possible that the body is working so hard on a daily basis to fight what it recognizes as toxic that when it needs to fight real sickness, the body goes into overdrive to fight and sends the nervous system out of whack. It has made me wonder what the correlation could be with kids who have PANDAS and other immune failure in the system with things like with food allergies. But that's another discussion thread..... I mention all this as I wonder if it would be worthwhile for you to explore functional medicine. http://www.functionalmedicine.org/about/whatis.asp I started with Dr. Hyman's book, The UltraMind Solution, which explains why and how we need to bring the body to optimal physical health for neurological and psychological health. That they are intimately related.

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This is from Swedo's 1st 50 cases paper. It explains why PANDAS kids react to non-strep triggers.

 

....not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

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I should add that there are at least a couple of members (Diana Pohlman of pandasnetwork is one) whose kids had negative throat cultures...but when they did an MRI there was evidence of a SINUS INFECTION. Strep can definitely hide out in the sinuses (where it is difficult to culture).

 

We saw a rheumatologist at Stanford who said she thinks that "Strep is hiding out" in these PANDAS kids. I suppose this means it's hiding out in non-throat places ...which are hard to detect/culture.

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I should add that there are at least a couple of members (Diana Pohlman of pandasnetwork is one) whose kids had negative throat cultures...but when they did an MRI there was evidence of a SINUS INFECTION. Strep can definitely hide out in the sinuses (where it is difficult to culture).

 

We saw a rheumatologist at Stanford who said she thinks that "Strep is hiding out" in these PANDAS kids. I suppose this means it's hiding out in non-throat places ...which are hard to detect/culture.

 

We have never had a positive throat culture. I believe ours was and is in the gut. My son is not only on zith but we have to watch what he eats. We never had this problem before his explosion. My son has to drink alot of "good" water, no juices now, no milk. No sugar, candy, anything artificial. We were doing bettter until H1N1. Kathy

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Of course strep can colonize elsewhere than the throat. Impetigo is one such condition, Intertrigo is another. http://pediatrics.aappublications.org/cgi/reprint/112/6/1427

 

MythBuster! You just solved one of Allie's great medical mysteries!!!!!! That armpit rash that she had for years (would also frequent neck creases in infancy, crook of elbow and belly button) and that didn't go away no matter what the doctors said to rub on it (so must just be another one of those autistic allergies <_< ) was intertrigo!!!! It did finally go away when she started profilactic abx. YOU ROCK, buster!

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You're having a good week, huh? First that study you found that proved what your doctor thought, then the immunologist, now the intertrigo. Good things are coming your way!

 

 

MythBuster! You just solved one of Allie's great medical mysteries!!!!!! That armpit rash that she had for years (would also frequent neck creases in infancy, crook of elbow and belly button) and that didn't go away no matter what the doctors said to rub on it (so must just be another one of those autistic allergies <_< ) was intertrigo!!!! It did finally go away when she started profilactic abx. YOU ROCK, buster!
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You're having a good week, huh? First that study you found that proved what your doctor thought, then the immunologist, now the intertrigo. Good things are coming your way!

 

 

MythBuster! You just solved one of Allie's great medical mysteries!!!!!! That armpit rash that she had for years (would also frequent neck creases in infancy, crook of elbow and belly button) and that didn't go away no matter what the doctors said to rub on it (so must just be another one of those autistic allergies <_< ) was intertrigo!!!! It did finally go away when she started profilactic abx. YOU ROCK, buster!

 

Yes, and this also sorta confirms that she had strep in infancy- we thought it was a rash from teething drool getting into her neck creases (wouldn't surprise me if the drool is what spread the strep to the neck crease, actually). This is important, because it is believed her autism symptoms started in infancy...not proof, but I don't buy the coincidence thing, either.

 

'Bout time I have a good week!

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"Erysipelas is yet another, and of course the great atopic dermatitis"

 

Sorry i don't know how to quote just a section of a post. Can someone help?

anyway, the "atopic dermatitis" jumped out at me. Isn't that eczema? I'm sure that's what a dermatologist once told me was under my eye. I frequently get a dry, reddish patch under my eye, sometimes both but the right seems to be more affected. Are you saying STREP causes that, or the rash is actually a strep rash?? Got me thinking now......

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"Erysipelas is yet another, and of course the great atopic dermatitis"

 

Sorry i don't know how to quote just a section of a post. Can someone help?

anyway, the "atopic dermatitis" jumped out at me. Isn't that eczema? I'm sure that's what a dermatologist once told me was under my eye. I frequently get a dry, reddish patch under my eye, sometimes both but the right seems to be more affected. Are you saying STREP causes that, or the rash is actually a strep rash?? Got me thinking now......

 

To quote a section:

Copy and paste what you want to quote, highlight it and select the little word bubble from the top of the reply box. Voila!

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