Confused about autoimmune response

[Missmom]

I am new here and I know most of you understand this way better than I do so I thought I would see if any of you could help me understand this better. As I read all the info regarding pandas they'll talk about how the body creates antibodies to fight off the infection (o.k. I get that). Then the antibodies mistake the healthy tissue on the basil ganglia for the strep bacteria and starts fighting off or attacking the basil ganglia. (still I get that). Here is where I get confused.... Once the child takes an antibiotic to kill off the strep infection and the infection goes away then what happens to those antibodies? Do they continue to attack the BG which in turn keeps the pandas symptoms active? Do the antibodies eventually weaken and die off putting the child into remission until another infection re-exasperates the symptoms? If so why do antibiotics continue to work and why would the child need long term full antibiotics unless there is an active infection? If the infection is cured how long on average would it take before the the antibodies start to weaken. Instead it seems like the child's symptoms seem to keep lingering or getting worse once the active infection is gone. Is there an article anywhere I can read about this in so called. "laymans terms"? Thank you all in advance for any input you might have.

[HT's Mom]

Welcome to the forum. Your question is a very good one, as it sounds like you have done your research and are asking the logical questions, which I too have asked the PANDAS doctors we have worked with. I know there are much better informed parents on the forum than me who will chime in soon, but just to get you started, you can look at the information on the "Helpful Threads" post at the top of the forum, and under that, "Frequently Asked Questions." There is information about antibiotic treatment, and about intercellular strep that will help answer your question. The PANDAs doctors I have talked with say it is not known completely why prophylactic antibiotic works, but it is believed it is protective of the brain and preventative against future infection and even against infection hiding in cells that can be released as cells die off.

 

Hope that helps. Can you tell us about your child's situation?

[MomWithOCDSon]

I know it may not be ideal for clarity, but you are likely to get possibly a dozen different answers to your question. Most of us wonder the same things, and, truthfully, if anyone tells you that they know 100% why and what role the antibiotics play in treating PANDAS, I'd be suspect. There's just too much nobody knows yet. And, unfortunately, that's one of the reasons we're having trouble getting a treatment concensus among the doctors and researchers who recognize PANDAS but feel that there are different courses of action that are most prudent. As I understand from Dr. Swedo's lectures and papers, for one, she is not a "believer" in long-term antibiotics for PANDAS herself, despite the fact that many families (including mine) have found great benefit to it.

 

My understanding of the basic mechanics behind PANDAS is similar to yours. As to why antibiotics may be helpful beyond the 10- to 30-day "curing" of the active infection, there are a number of postulates. Some think that there may remain some "intracellular" strep or infection lurking deep in biofilms, sinuses, etc. that continue to trigger antibody production well past the "death" of the more obvious, classic infection that sent you to the doctor in the first place.

 

Others think that your first PANDAS exacerbation is, in fact, a "straw that broke the camel's back," and that your child's immune system has probably been suffering from an auto-immune assault for some time, just finally getting to the overload that results in the PANDAS behavior set and finally tips you off to the problem. That being said, though, once over-loaded, the immune system may continue to be triggered by other microbes and allergens and thus continue to be over-active in terms of antibody production, and/or under-efficient (immune deficient)and fail to beat back the infections sufficiently that the immune system gets the "stop" sign to reduce antibody production. Long-term treatment dose antibiotics may successfully keep all these nasties at bay and/or help "calm" the immune system.

 

Then, there's the other qualities of antibiotics that could be part of the picture. Some antibiotics are thought to be anti-inflammatory, thus assisting in closing the permeability of the blood brain barrier and helping fight inflammation in the gut, as well. Other antibiotics are thought to be glutamate-modulating, which can help with the behavioral side of the equation.

 

Our journey has been similar to Sammy Maloney's of "Saving Sammy" fame. We started with Augmentin XR, a beta-lactam antibiotic, for 30 days. But when the 30 days were over and we took him off the abx, the behaviors that had subsided or disappeared entirely began to come back or increase in intensity. Our DS had never been classically "positive" for strep (culture) anyway, so culturing him again wouldn't have provided an answer. It occurred to us that he might have a deep-seated sinus infection of some sort or strep in the gut or something like that because he's suffered from allergies and some sensitive gut issues over time, but exhaustively testing for all that was daunting, especially in the face of a skeptical pediatrician. But the ped was willing to renew our Augmentin prescription, so we took it; within about 5 days of going back on the abx, his behaviors began to subside again.

 

We went through this pattern several times over the next 9 months or so; each time we tried to remove or even cut back on the antibiotic, his behavior would regress again. This was the same pattern Sammy experienced, as well. So, finally, we were able to convince (or tire out) our ped and get a series of renewals. In the end, we kept him on treatment dose XR for 2 full years, and then began to wean him off of it very slowly over another 3 months. That timing finally "worked."

 

Sorry to ramble, but I hope some of that rings a bell for you. I'm sure others will have similar . . . and discrepant . . . stories to share!

[Missmom]

I posted about a week ago with my story. I think you could still find it. My ds 12 starts with tics overnight when he gets a strep infection. We went two years between each infection but this time seems worse. He also gets moody, hyperactive, and argumentative. He has improved by about 90-95% so far on augmentin but I am so scared when it runs out that it will all return. I do also have 6 mos of keflex prophylactic. Hoping it is enough.

[peglem]

I am new here and I know most of you understand this way better than I do so I thought I would see if any of you could help me understand this better. As I read all the info regarding pandas they'll talk about how the body creates antibodies to fight off the infection (o.k. I get that). Then the antibodies mistake the healthy tissue on the basil ganglia for the strep bacteria and starts fighting off or attacking the basil ganglia. (still I get that). Here is where I get confused.... Once the child takes an antibiotic to kill off the strep infection and the infection goes away then what happens to those antibodies? Do they continue to attack the BG which in turn keeps the pandas symptoms active? Do the antibodies eventually weaken and die off putting the child into remission until another infection re-exasperates the symptoms? If so why do antibiotics continue to work and why would the child need long term full antibiotics unless there is an active infection? If the infection is cured how long on average would it take before the the antibodies start to weaken. Instead it seems like the child's symptoms seem to keep lingering or getting worse once the active infection is gone. Is there an article anywhere I can read about this in so called. "laymans terms"? Thank you all in advance for any input you might have.

I'm told by the immunologist that antibodies last @ 3 weeks. But, the immune system doesn't just make antibodies when there is active infection, it also makes antibodies in response to exposure. Further, if the immune system is tricked into reacting to the self tissue that the autoantibodies cross reacted to...that could also trigger stuff. Just a few possibilities that I can think of..But, nobody really knows for sure.

[dut]

Hi - some drs believe that the B cells, that should stop pumping out the antibodies once the threat is over, instead keeping making antibodies in some of these kids...

 

what has me stumped tho is this.. we have seen the three week half-life of antibodies very obviously in action when our dd had a serum sickness reaction to augmentin. As predicted, her reaction stopped at 20/21 days, the half-life of the antibody that was combining with the antigen and causing deposition of immune complexes in her skin and joints. When our dd has taken steroids (2 times)to quell flares that looked to be getting really bad, she had at least a 70% response within 12 hours of the first dose.

 

If the culprit is autoreactive antibodies attacking the basal ganglia and the effect of steroids is to decrease inflammation and to maybe help the integrity of the BBB, I'm surprised that with the half-life of the antibodies still hanging around in the brain being 20 odd days that her response has been so fast and so nearly complete (full, lasting remission with 5 day burst within 4-5 days the 1st time and 90% remission again within 4-5 days the second time).

 

I can see how the anti-inflammatory effect could do this but would it last the 3 weeks that the antibodies should last even if no more are able to get thru the BBB... dunno.. ...

[Missmom]

I know it may not be ideal for clarity, but you are likely to get possibly a dozen different answers to your question. Most of us wonder the same things, and, truthfully, if anyone tells you that they know 100% why and what role the antibiotics play in treating PANDAS, I'd be suspect. There's just too much nobody knows yet. And, unfortunately, that's one of the reasons we're having trouble getting a treatment concensus among the doctors and researchers who recognize PANDAS but feel that there are different courses of action that are most prudent. As I understand from Dr. Swedo's lectures and papers, for one, she is not a "believer" in long-term antibiotics for PANDAS herself, despite the fact that many families (including mine) have found great benefit to it.

 

My understanding of the basic mechanics behind PANDAS is similar to yours. As to why antibiotics may be helpful beyond the 10- to 30-day "curing" of the active infection, there are a number of postulates. Some think that there may remain some "intracellular" strep or infection lurking deep in biofilms, sinuses, etc. that continue to trigger antibody production well past the "death" of the more obvious, classic infection that sent you to the doctor in the first place.

 

Others think that your first PANDAS exacerbation is, in fact, a "straw that broke the camel's back," and that your child's immune system has probably been suffering from an auto-immune assault for some time, just finally getting to the overload that results in the PANDAS behavior set and finally tips you off to the problem. That being said, though, once over-loaded, the immune system may continue to be triggered by other microbes and allergens and thus continue to be over-active in terms of antibody production, and/or under-efficient (immune deficient)and fail to beat back the infections sufficiently that the immune system gets the "stop" sign to reduce antibody production. Long-term treatment dose antibiotics may successfully keep all these nasties at bay and/or help "calm" the immune system.

 

Then, there's the other qualities of antibiotics that could be part of the picture. Some antibiotics are thought to be anti-inflammatory, thus assisting in closing the permeability of the blood brain barrier and helping fight inflammation in the gut, as well. Other antibiotics are thought to be glutamate-modulating, which can help with the behavioral side of the equation.

 

Our journey has been similar to Sammy Maloney's of "Saving Sammy" fame. We started with Augmentin XR, a beta-lactam antibiotic, for 30 days. But when the 30 days were over and we took him off the abx, the behaviors that had subsided or disappeared entirely began to come back or increase in intensity. Our DS had never been classically "positive" for strep (culture) anyway, so culturing him again wouldn't have provided an answer. It occurred to us that he might have a deep-seated sinus infection of some sort or strep in the gut or something like that because he's suffered from allergies and some sensitive gut issues over time, but exhaustively testing for all that was daunting, especially in the face of a skeptical pediatrician. But the ped was willing to renew our Augmentin prescription, so we took it; within about 5 days of going back on the abx, his behaviors began to subside again.

 

We went through this pattern several times over the next 9 months or so; each time we tried to remove or even cut back on the antibiotic, his behavior would regress again. This was the same pattern Sammy experienced, as well. So, finally, we were able to convince (or tire out) our ped and get a series of renewals. In the end, we kept him on treatment dose XR for 2 full years, and then began to wean him off of it very slowly over another 3 months. That timing finally "worked."

 

Sorry to ramble, but I hope some of that rings a bell for you. I'm sure others will have similar . . . and discrepant . . . stories to share!

[Missmom]

Wow, I read that book-my heart goes out to you for all that you have been through. So glad you never gave up. You and moms like you are paving the way for future generations. Thank you for your response. I feel better knowing that at least there are many people out there trying to find answers.

[Missmom]

Hi - some drs believe that the B cells, that should stop pumping out the antibodies once the threat is over, instead keeping making antibodies in some of these kids...

 

what has me stumped tho is this.. we have seen the three week half-life of antibodies very obviously in action when our dd had a serum sickness reaction to augmentin. As predicted, her reaction stopped at 20/21 days, the half-life of the antibody that was combining with the antigen and causing deposition of immune complexes in her skin and joints. When our dd has taken steroids (2 times)to quell flares that looked to be getting really bad, she had at least a 70% response within 12 hours of the first dose.

 

If the culprit is autoreactive antibodies attacking the basal ganglia and the effect of steroids is to decrease inflammation and to maybe help the integrity of the BBB, I'm surprised that with the half-life of the antibodies still hanging around in the brain being 20 odd days that her response has been so fast and so nearly complete (full, lasting remission with 5 day burst within 4-5 days the 1st time and 90% remission again within 4-5 days the second time).

 

I can see how the anti-inflammatory effect could do this but would it last the 3 weeks that the antibodies should last even if no more are able to get thru the BBB... dunno.. ...

[Missmom]

You bring up a good point. I wish I had an explanation for you. Maybe someone else could reply their thoughts.