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Remind me how "expousre" causes symptoms


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I'm going crazy here. Can someone please remind me why "exposure" to strep causes my PANDAS daughter to react? My dd6, just had her 3rd IVIG on 1/17. She was doing so well after IVIG #2 in Nov 2010, but started to backslide the days leading up to #3 last week. Well, I found out on Tuesday that my son has strep and then found out today that a child in dd's classroom was dx with strep throat last night. So...she's clearly being exposed. The question I have is that if she's on 500 mg of Azith, why is she being affected? Is it simply that the bacteria is getting into her body, setting things in motion, even though the abx is helping her to NOT get the infection?

 

I want to believe that her current symptoms are due to this exposure.

Edited by worriedmommy
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I'm going crazy here. Can someone please remind me why "exposure" to strep causes my PANDAS daughter to react? My dd6, just had her 3rd IVIG on 1/17. She was doing so well after IVIG #2 in Nov 2010, but started to backslide the days leading up to #3 last week. Well, I found out on Tuesday that my son has strep and then found out today that a child in dd's classroom was dx with strep throat last night. So...she's clearly being exposed. The question I have is that if she's on 500 mg of Azith, why is she being affected? Is it simply that the bacteria is getting into her body, setting things in motion, even though the abx is helping her to NOT get the infection?

 

I feel like I'm going crazy here. I want to believe that her current symptoms are due to this exposure.

When microbes enter the body, the immune system responds with antibodies to destroy the invaders before they can cause infection. In our kids those antibodies produce PANDAS symptoms.

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Yes, this is really hard to grasp. I STILL have difficulty believing it happens! But then I think of how easy it is to become "exposed" to pathogens- they are EVERYWHERE at all times! When I was a working biologist, I did some work with cultures- growing microbes on a petri plate for educational purposes. It was nearly impossible to keep plates from being contaminated no matter how diligent my "aseptic technique" was. I was NOT working in a sterile, environmentally controlled laboratory, but in classrooms, where there were bazillions of different microbes floating everywhere in the air and on surfaces. The plates always grew stuff that we didn't intend! I'm sure strep was there among the other bugs, but just the sheer number of things growing on plates even with the precautions that microbiologists use. Just lifting the lids for too long, or accidently touching the very tip of a needle against the lab bench, etc. Now, if you were to PURPOSELY inoculate a petri plate by touching an unwashed hand ever so briefly onto the growth medium in the dish, there would be, within half a day, colonies of bacteria of every color growing there! This helps me remember that it is SO EASY to get exposed! Now, the reaction to exposure is definitely not our imagination. As soon as a few pathogenic cells enter the mouth, or nasal membranes, the body is put on alert, and signals are sent by cells, and then immune cells are copied and sent out into the body's circulation. As soon as this happens, other signals are also sent out that cause inflammation. It doesn't take long for the cascade of effects to take place. There doesn't need to be an "infection" for there to be an immune response. Every time your body encounters pathogens (and sometimes when cells are NOT pathogenic) your immune cells, as well as other defense responses, are sent out "on patrol" to limit the number of potentially harmful invaders. The immune response keeps these invaders in check, but sometimes the negative effects happen too, especially in the case of chronic disease where an autoimmune response has been started. If there are already circulating immune cells that have targeted "self" cells (such as heart, joint, brain tissue), then an increase in immune response, triggered by a pathogen, may spill the bucket so to speak. It is an erroneous immune response that involves "mistaken identity." This is the whole issue of molecular mimicry- whereby for some reason, some in-coming cell surfaces look like the surfaces of cells of the body. Because antibodies target certain antigens, and those antigens resemble the surface of a brain cell, or whatever, those antibodies will accidentally work on the brain cell too. There is much known about this phenomenon with the m-proteins of certain bacteria and human tissue. Uhhhh..... does that help?

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Gosh phasmid--that was about the most clear explanation i have heard yet!! SEriously! So the kid does not even have to "get sick" but just being exposed triggers the immune (well, autoimmune) response...I wonder then if this autoimmune thing can get "stuck"---as dd has had the ocd for a couple years, but the major, many tics started in July, and have not stopped. Can you help me make sense of why she is still symptomatic in lieu of what you explained??? She's been on abx for over 2 months now.....thanks!!

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Thanks so much for the replies. It makes sense...but when I try and explain it to people (without PANDAS kids), I feel like I sound nuts!

 

I want nothing more than for this current downslide to be related to strep exposure...at least I'll have a reason! I'm constantly analyzing each and every aspect of dd's life, trying to find a cause for every PANDAS symptom. Last week when she started to have an increase in tics, I was dumbfounded. I was almost giddy when the Dr. told me my son had strep, as it seemed so clear as to what was happening to dd. Then to get the info today on her classmate, was even more confirmation.

 

I'm just hoping that as those with strep get better, dd's symptoms will subside. I'm a bit unsure about that, however, as her worst exacerbation every happened last February when she had 11 classmates with strep. We've been battling that episode ever since...and it was JUST starting to get better, when this hit.

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Well, I can try, but I am GUESSING... okay?

 

My GUESS is that when the memory B cells are copied, the "clones" get the same "orders" that the original "soldiers" received from "headquarters." Rather than calling in all the soldiers and explaining that a mistake has been made, that they no longer need to go after stuff that looks like certain cells, the next watch of soldiers gets the same bad information. The faulty offensive continues and the self cells, those which the immune cells are supposed to be protecting, are harmed in some way. Since antibiotics do not have any effect on these faulty immune cells, but mainly work on bacteria (couple of different mechanisms), these immune cells continue to circulate.

 

Here is where I mention something I told myself I wouldn't mention, because I have only second hand information right now, and I have been trying to get the mom who has direct experience to post here...

 

There is a physician, Dowain Wright, M.D. at Children's Hospital of Central California, who has performed a new therapy wherein these "bad antibodies" responsible for keeping the autoimmune process active, to treat PANDAS. It is a form of B cell ablation- wiping out the B cells using chemo drugs. I'm sure this would be reserved for only horribly incapacitated children for obvious reasons. I won't say anymore about this until this mom post's on this herself.

http://onlinelibrary.wiley.com/doi/10.1002/art.10476/pdf

 

 

Gosh phasmid--that was about the most clear explanation i have heard yet!! SEriously! So the kid does not even have to "get sick" but just being exposed triggers the immune (well, autoimmune) response...I wonder then if this autoimmune thing can get "stuck"---as dd has had the ocd for a couple years, but the major, many tics started in July, and have not stopped. Can you help me make sense of why she is still symptomatic in lieu of what you explained??? She's been on abx for over 2 months now.....thanks!!

Edited by Phasmid
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Guest pandas16

Thanks so much for the replies. It makes sense...but when I try and explain it to people (without PANDAS kids), I feel like I sound nuts!

 

I want nothing more than for this current downslide to be related to strep exposure...at least I'll have a reason! I'm constantly analyzing each and every aspect of dd's life, trying to find a cause for every PANDAS symptom. Last week when she started to have an increase in tics, I was dumbfounded. I was almost giddy when the Dr. told me my son had strep, as it seemed so clear as to what was happening to dd. Then to get the info today on her classmate, was even more confirmation.

 

I'm just hoping that as those with strep get better, dd's symptoms will subside. I'm a bit unsure about that, however, as her worst exacerbation every happened last February when she had 11 classmates with strep. We've been battling that episode ever since...and it was JUST starting to get better, when this hit.

 

 

I used to do that too- try and track every little thing every time my PANDAS symptoms or OCD got worse. Truth be told, it's an endless battle, been doing it for 13 years. Yes, hypothetically PANDAS can go away completely. However, there is so so much stuff that triggers it and if you think about all the bacteria/allergens that we live with, plus hormones it will never be completely gone and you'll never really know what it is. If doctors haven't figured it out, you probably won't either- that's what my mom always said. I don't mean it in a condescending way and its not necessarily a bad thing. I really believe that PANDAS makes me a much stronger person. I just stopped obsessing over everything and accepted that I'm probably going to have a low level of OCD/Tics/Anxiety when I get sick and when I'm stressed. I go to behavioral cognitive therapy to find ways to deal with my OCD and when safer immune drugs come out I'll just use that as a band aid. If something terrible were to happen, have a doc in place who can treat you.

 

As a teacher, I was just exposed to strep in December from a co-worker. My symptoms ramped up for about two weeks, however I was also on clarithromycin which caused herxing so I'm not sure what exactly it was. Either way it was about two weeks (if that helps)

 

I see exacerbations due to exposure like this ( I could be wrong)

 

If there is no current infection in the body, it's not logical that there would be an increase in antibodies in my opinion. You typically don't see positive IGMS with exposure, only active infections. I do think however that kids with PANDAS and adults (myself) probably always have a low level of antibodies being produced against the brain and when they are exposed it causes inflammation, (production of cytokines & macrophages) weakens the blood brain barrier and allows the already existent antibodies to get across and cause problems. I think this is why exposures are usually short lived. It's not an increase in antibodies, it's just the immune system being "activated."

Edited by pandas16
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Well, I can try, but I am GUESSING... okay?

 

My GUESS is that when the memory B cells are copied, the "clones" get the same "orders" that the original "soldiers" received from "headquarters." Rather than calling in all the soldiers and explaining that a mistake has been made, that they no longer need to go after stuff that looks like certain cells, the next watch of soldiers gets the same bad information. The faulty offensive continues and the self cells, those which the immune cells are supposed to be protecting, are harmed in some way. Since antibiotics do not have any effect on these faulty immune cells, but mainly work on bacteria (couple of different mechanisms), these immune cells continue to circulate.

 

Here is where I mention something I told myself I wouldn't mention, because I have only second hand information right now, and I have been trying to get the mom who has direct experience to post here...

 

There is a physician, Dowain Wright, M.D. at Children's Hospital of Central California, who has performed a new therapy wherein these "bad antibodies" responsible for keeping the autoimmune process active, to treat PANDAS. It is a form of B cell ablation- wiping out the B cells using chemo drugs. I'm sure this would be reserved for only horribly incapacitated children for obvious reasons. I won't say anymore about this until this mom post's on this herself.

http://onlinelibrary.wiley.com/doi/10.1002/art.10476/pdf

 

 

Gosh phasmid--that was about the most clear explanation i have heard yet!! SEriously! So the kid does not even have to "get sick" but just being exposed triggers the immune (well, autoimmune) response...I wonder then if this autoimmune thing can get "stuck"---as dd has had the ocd for a couple years, but the major, many tics started in July, and have not stopped. Can you help me make sense of why she is still symptomatic in lieu of what you explained??? She's been on abx for over 2 months now.....thanks!!

 

 

Phasmid, I actually talked with a doctor down at Hopkins using low dose chemo & stem cells. Chemo therapy does in fact wipe out the bad antibodies but b-cells still remember so if strep were to happen again the same reaction would occur. Same as plasmaphersis, IVIG, etc.

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Wow---this is all very interesting---and making it clear. What about cases where there appears to be a "cure" from IVIG, or PEX? Like Diana P.'s son.....So IVIG gives extra antibodies, to hopefully "eat up" the bad ones??? and PEX flushes the bad ones out??? then what happens? sorry, just trying to wrap my head around this...wondering if it's worth doing IVIG if only to need it again, and again, and again....

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With low dose IVIG, there is a "replenishing" of the troops, in continuation of the same analogy, where before there weren't enough to fight.

With high dose IVIG, there is a message sent to the troops that they can take it easy, and there is a temporary cessation of antibody production. With plasma exchange, the patient's blood is filtered, and new antibodies added. With plasmapheresis, the blood is filtered, with bad antibodies removed, but new antibodies are not added.

 

Still, it is not fully understood how PANDAS symptoms are helped by IVIG. With plasmapheresis/exchange, the removal of autoantibodies results in reduction of symptoms. I don't know exactly how.

 

Wow---this is all very interesting---and making it clear. What about cases where there appears to be a "cure" from IVIG, or PEX? Like Diana P.'s son.....So IVIG gives extra antibodies, to hopefully "eat up" the bad ones??? and PEX flushes the bad ones out??? then what happens? sorry, just trying to wrap my head around this...wondering if it's worth doing IVIG if only to need it again, and again, and again....

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Guest pandas16

I'm not sure who Dianna is, but when you say "cured" did her son get strep again and not have an abnormal immune reaction?

Edited by pandas16
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Well, Diana P.---pandasnetwork.com.....I am pretty sure (not POSITIVE) but fairly certain that she claims that over time, he has been less and less responsive to strep---I believe he had IVIG (maybe PEX, but think IVIG) twice. She may also give abx when exposed. This sounds very wishy-washy, but in a nutshell, she has given me reason to believe that there are kids out there how get IVIG and get on with life....most of us probably wouldn't be hanging out on this forum if our kids were "cured", so we just rarely hear about it here???

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Gosh phasmid--that was about the most clear explanation i have heard yet!! SEriously! So the kid does not even have to "get sick" but just being exposed triggers the immune (well, autoimmune) response...I wonder then if this autoimmune thing can get "stuck"---as dd has had the ocd for a couple years, but the major, many tics started in July, and have not stopped. Can you help me make sense of why she is still symptomatic in lieu of what you explained??? She's been on abx for over 2 months now.....thanks!!

 

From my understanding of inflammation, once it gets sky-high (like an exacerbation that went on for a long time untreated or not treated "hard" enough) it needs to be knocked down with something like IVIG or a steroid taper. Adding antibiotics may not be enough to get that chronic level of inflammation down. After the inflammation is brought down, then one needs to be vigilent when strep hits, start antibiotics ASAP before inflammation has a chance to get too high again. So prevention is what it's all about. Having a script on-hand ready to go when you think strep is in the picture.

 

With all that said, I'm not quite sure how you do that when you don't know if it's just exposure or an actual infection. Personally, I think it depends on the severity of symptoms. There are times when I would bet my life on the fact that one of my boys has strep and I am usually right (pos strep culture). I think it just takes time and experience to fine tune your instincts on this. According to one of our pandas docs, you can't take the chance on waiting for a 48 hour culture to come in b/c then the brain is just sitting getting inflammed. Once you think there is step, you start the antibiotic.

 

 

 

Wow---this is all very interesting---and making it clear. What about cases where there appears to be a "cure" from IVIG, or PEX? Like Diana P.'s son.....So IVIG gives extra antibodies, to hopefully "eat up" the bad ones??? and PEX flushes the bad ones out??? then what happens? sorry, just trying to wrap my head around this...wondering if it's worth doing IVIG if only to need it again, and again, and again....

 

This is just my 2cents, taking into account what our pandas docs have explained. Once you get the inflammation down, say with IVIG, you learn to keep it down by being vigilent with starting antiboitics the second strep hits, etc. Also, the use of other anti-inflammatories (we use spironolactone, LDN, and when necessary, steroids). Early intervention/prevention is key.

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Well, Diana P.---pandasnetwork.com.....I am pretty sure (not POSITIVE) but fairly certain that she claims that over time, he has been less and less responsive to strep---I believe he had IVIG (maybe PEX, but think IVIG) twice. She may also give abx when exposed. This sounds very wishy-washy, but in a nutshell, she has given me reason to believe that there are kids out there how get IVIG and get on with life....most of us probably wouldn't be hanging out on this forum if our kids were "cured", so we just rarely hear about it here???

 

 

I'm not sure, but if she has to give him abx when he is exposed, then he is not cured. It was drilled over and over to me that B-Cells remember! I know that when I was originally very sick, every exposure I had was awful because my antibodies were already high. As I got better, exposures affected me less and less but that's normal because my antibodies weren't high and there was less overall inflammation in my body.

Edited by pandas16
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Stephanie prevention is definitely the key! I've been on abx since my original diagnosis. The only time I got strep was when I was diagnosed. I rotate them every 5 years. First I was on Penn, then Zithrom, now Augmentin. I always keep a couple drugs as my safety drugs like levaquin or clindamycin too.

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