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norcal mom -- you mentioned something about BBB in another thread and i've been thinking. . .

 

ds7 had a big exacerbation in nov following a MAJOR stressful time at school. we weren't so much on it at first b/c it seemed likely to have some reaction to this trouble. then it got worse and more pandas-like. we treated with intense 'motrin therapy'. that and a little time and he's back to his 'normal'. i pretty much rate him at 90-95%. major issues are overreactions and quick reactions, anxiety avoidance that can be worked with through ERP.

 

he had sudden onset 3 yrs ago -- so now it's mostly a muddled mess of what could be remaining pandas symptoms, what is poorly learned coping and lacking skills from having brain affected for ages 4-7, and what may be general personality issues he'd have anyway.

 

i think i may have been lulled into a sense of feeling he was in a good state of healing. now i question if his body is actually at the same state immunologically and it's mostly due to BBB permeabiltiy or not that we see remission of symptoms -- he always has the autoantibodies circulating and they sometimes get through to the brain; or if it is actually possible to clear the autoantibodies.

 

it is possible his body was also reacting to contact of something at school -- b/c it was fall and there was flu vac day, he was not in school that day but the day after. i don't think he was sick -- i really feel it was the stress. but i guess you can never know.

 

so, ivig clears the autoantibodies, right? but i've never understood how it can do that more than temporarily. . . i just don't get the 'rebooting' theory.

 

where are we with BBB thinking? is it generally thought 50/50 BBB and immune reaction?

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Hey Smarty --

 

I know this was directed, at least firstly, at norcalmom, and I'll be very interested to hear her perspective, as well, along with some others here who are much better versed in the immunological side of things than I am.

 

But I did remember having this paper abstract in my "research arsenal," and thought if you hadn't come across it yet, it might be useful to you; perhaps someone here will even have access to the full paper to share:

 

Stress-Induced Permeability in BBB

 

In our own experience, DH and I have discussed whether or not the BBB permeability level might not've been a bigger player in DS's condition that we'd originally given it credit for. Basically, for a long time, it seemed as though there was this self-perpetuating cycle in which DS's overall anxiety would ramp up, and then it would feed on itself, his OCD would increase; we would know he'd been exposed (his best friend at school had strep, or a kid who'd come over to play computer games walked into our house with a nasty cold), but at the time he was still on antibiotics; he was mounting antibodies to viral and microbial triggers, but he really wasn't catching anything, not even the viruses.

 

Once we agreed to some more extreme measures to try and get a grip on the basic, underlying stress/anxiety (therapeutic and pharmacological), everything else seemed to follow suit and we finally got off the "merry-go-round" of that self-perpetuating cycle. We began to consider the concept of the stress itself contributing to the BBB permeability, thereby allowing these antibodies he has, and likely always will have on some level, to get in where they don't belong. The hope is that, in breaking that stress link for s sufficient period of time, the BBB could close up more, to a more "normal" level of permeability, and the healing would continue, rather than getting stopped in its tracks by yet another inevitable re-exposure to something, and an immune response that, if not for its ability to break through the BBB, might not cause any increase in behavioral symptoms whatsoever.

 

Nothing empirical to suggest that this hypothesis on our part has any merit, but it is an appealing one and, based on some of the literature I've been able to read (and understand at least to an 8th-grade level! ;) ), it just might be part of our picture.

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Once we agreed to some more extreme measures to try and get a grip on the basic, underlying stress/anxiety (therapeutic and pharmacological), everything else seemed to follow suit and we finally got off the "merry-go-round" of that self-perpetuating cycle. We began to consider the concept of the stress itself contributing to the BBB permeability, thereby allowing these antibodies he has, and likely always will have on some level, to get in where they don't belong. The hope is that, in breaking that stress link for s sufficient period of time, the BBB could close up more, to a more "normal" level of permeability, and the healing would continue, rather than getting stopped in its tracks by yet another inevitable re-exposure to something, and an immune response that, if not for its ability to break through the BBB, might not cause any increase in behavioral symptoms whatsoever.

 

MomWithOCDSon... HOW DID YOU DO THIS??? DO TELL, DO TELL!

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MomWithOCDSon... HOW DID YOU DO THIS??? DO TELL, DO TELL!

 

Knock on wood . . .

 

1. We went with some techniques in "The Explosive Child" so that we could literally downgrade the tension and arguments in our home over what behaviors were or were not borne out of OCD (DS constantly arguing that he was making certain choices out of reason, rather than compulsion or obsession, and DH and I being 99% certain that the OCD was calling the shots). Fewer power struggles = fewer arguments = fewer meltdowns = calmer, more peaceful home environment = less stress on DS.

 

2. We all went to CBT weekly with DS and worked together for strategies that would permit us to simultaneously fight the OCD while not necessarily fighting with DS, since that always either went nowhere or just fed him getting ramped up and increasingly anxious.

 

3. We advocated heavily at school, and got lots of help, in terms of keeping academic stressors at a minimum . . . working at the edge of capability (challenged but not overwhelmed), and so long as he put forth an honest effort and demonstrated a grasp of the concepts, homework completion was not mandatory for success in a class since, though he loves school itself and can ace pretty much any test just by virtue of classroom attentiveness and participation, homework is frequently an issue with respect to time-management.

 

4. For us, I think this has been key, though it is not the answer for everyone: we introduced lamictal into DS's pharmacological interventions. Lamictal (lamigotrine) is an anti-convulsant, anti-seizure medication that is also a mood stabilizer . It is thought to help modulate brain glutamate because it works on sodium channels at the receptor sites (as best I understand the literature). At any rate, it was a turning point in DS's recovery. With the lamictal, he's been able to "see the forest for the trees," instead of instantly getting worked up over a typical stressor or permitting the OCD to get him worked up because he's forced or encouraged to forego a ritual or compulsion. He's less "married" to the OCD emotionally, so he doesn't get so worked up. And when he doesn't get worked up, things don't tend to spiral out of control and melt down like they used to. We hope he won't be taking it for an extended period, but for now, it is definitely very supportive, so we'll continue.

 

So, overall, even in the face of triggers, typical stressors and/or stressful situations, DS has been able to maintain, to keep his cool, to think rationally through the problem, the potential solutions, and the best answer in that moment. Previously, at the first sign of "trouble," he would fold like a cheap suit . . . give in entirely to the anxiety, OCD and give up his rights and/or ability to reason out a solution. Then that stress and meltdown inevitably led to another one and another one, until he was in an almost constant state of anxiousness.

 

Like I said, knock on wood, we've been in a pretty good place since about August, despite a small bump in behaviors in early January following exposure (we think, given a best friend with strep). Our new motto is "Keep calm and carry on." ;)

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norcal mom -- you mentioned something about BBB in another thread and i've been thinking. . .

 

ds7 had a big exacerbation in nov following a MAJOR stressful time at school. we weren't so much on it at first b/c it seemed likely to have some reaction to this trouble. then it got worse and more pandas-like. we treated with intense 'motrin therapy'. that and a little time and he's back to his 'normal'. i pretty much rate him at 90-95%. major issues are overreactions and quick reactions, anxiety avoidance that can be worked with through ERP.

 

he had sudden onset 3 yrs ago -- so now it's mostly a muddled mess of what could be remaining pandas symptoms, what is poorly learned coping and lacking skills from having brain affected for ages 4-7, and what may be general personality issues he'd have anyway.

 

i think i may have been lulled into a sense of feeling he was in a good state of healing. now i question if his body is actually at the same state immunologically and it's mostly due to BBB permeabiltiy or not that we see remission of symptoms -- he always has the autoantibodies circulating and they sometimes get through to the brain; or if it is actually possible to clear the autoantibodies.

 

it is possible his body was also reacting to contact of something at school -- b/c it was fall and there was flu vac day, he was not in school that day but the day after. i don't think he was sick -- i really feel it was the stress. but i guess you can never know.

 

so, ivig clears the autoantibodies, right? but i've never understood how it can do that more than temporarily. . . i just don't get the 'rebooting' theory.

 

where are we with BBB thinking? is it generally thought 50/50 BBB and immune reaction?

 

I too would be interested in any information out there on how to heal the BBB and close it back to what it should be. That seems to be the key in some way to stop the reaction from happening in the first place! I have seen first hand how the Ibuprofen (we use Advil) makes a huge difference, and according to what I have read, the reason it does is because it decrease the BBB inflammation.

 

I am also wondering about the IVIG and how it works long term down the road. My ds8 is now 1 year into it, 50 days ABX and going strong, starting a tapering off next week very slowly to see where we are at now. I would say we are at 97% right now, so I am nervous about the taper but know he has to come off ABX and we need to see if we have cleared the stuff. He is diagnosed Sero negative PANS- meaning he makes NO antibodies to strep. So with the IVIG i am researching now as I feel this may be our next step if he cannot hold his own once off ABX. We have been lucky in that his symptoms are not as bad and milder than some I have read about. So an info or experiences with IVIG would be appreciated as well. I have read what is on here so far on it, but am wondering the success rate long term.

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MaggiesMoons---when you say "sero negative strep PANS" do you mean that your son doesn't get elevated titers after strep, or that his s. pneumonia titers were all low (immunodeficient)?

 

I, too, don't get the "rebooting" thing and sometimes wonder about these terms...if they are just ONE particular pandas doc who coined the term to explain what is hoped to happen in a very non-scientific way (ie., giving a scientific-sounding word to a slightly educated crapshoot)....

 

norcal mom -- you mentioned something about BBB in another thread and i've been thinking. . .

 

ds7 had a big exacerbation in nov following a MAJOR stressful time at school. we weren't so much on it at first b/c it seemed likely to have some reaction to this trouble. then it got worse and more pandas-like. we treated with intense 'motrin therapy'. that and a little time and he's back to his 'normal'. i pretty much rate him at 90-95%. major issues are overreactions and quick reactions, anxiety avoidance that can be worked with through ERP.

 

he had sudden onset 3 yrs ago -- so now it's mostly a muddled mess of what could be remaining pandas symptoms, what is poorly learned coping and lacking skills from having brain affected for ages 4-7, and what may be general personality issues he'd have anyway.

 

i think i may have been lulled into a sense of feeling he was in a good state of healing. now i question if his body is actually at the same state immunologically and it's mostly due to BBB permeabiltiy or not that we see remission of symptoms -- he always has the autoantibodies circulating and they sometimes get through to the brain; or if it is actually possible to clear the autoantibodies.

 

it is possible his body was also reacting to contact of something at school -- b/c it was fall and there was flu vac day, he was not in school that day but the day after. i don't think he was sick -- i really feel it was the stress. but i guess you can never know.

 

so, ivig clears the autoantibodies, right? but i've never understood how it can do that more than temporarily. . . i just don't get the 'rebooting' theory.

 

where are we with BBB thinking? is it generally thought 50/50 BBB and immune reaction?

 

I too would be interested in any information out there on how to heal the BBB and close it back to what it should be. That seems to be the key in some way to stop the reaction from happening in the first place! I have seen first hand how the Ibuprofen (we use Advil) makes a huge difference, and according to what I have read, the reason it does is because it decrease the BBB inflammation.

 

I am also wondering about the IVIG and how it works long term down the road. My ds8 is now 1 year into it, 50 days ABX and going strong, starting a tapering off next week very slowly to see where we are at now. I would say we are at 97% right now, so I am nervous about the taper but know he has to come off ABX and we need to see if we have cleared the stuff. He is diagnosed Sero negative PANS- meaning he makes NO antibodies to strep. So with the IVIG i am researching now as I feel this may be our next step if he cannot hold his own once off ABX. We have been lucky in that his symptoms are not as bad and milder than some I have read about. So an info or experiences with IVIG would be appreciated as well. I have read what is on here so far on it, but am wondering the success rate long term.

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My theory (I dunno that I can call it mine, I'm sure it is just a jumble of what I've read over the years) is that based upon the fact that all kids make more anti-neuronal antibodies when they get strep. They ALL do. median strep cam K is 135 - in normal kids. If during that time that these anti-neuronals are elevated, they have something that is causing BBB permeability, (a chronic infection - or something else that opens up the BBB) or a STRESSFUL event (since the researcher give the mice in the studies the equivalent of adrenaline (or some other human stress hormone?) in order to open the BBB (see, the experiment does not work unless they open the BBB) .

 

When those autoantibodies cross the BBB - they find the tissue that they fit. neuronal tissue. and they attack it. The immune system thinks its doing a good job - it found the antigen, and it asks for more of that type of antibody. So the body makes more of that one, and more, and more...which is why our kids cam K goes way higher than the normal range when they get strep. Its a learned response as well - so the first couple of times the immune system doesn't make that many of these antibodies, and not as quickly, but pretty soon, it makes them when exposed to any virus/bacteria - because it has always gotten a positive reinforcement.

 

Some have said that this may happen - but that the BBB would close. I don't know how long it takes for the BBB to close after a stressful event, but I know that my child was in a state of flight or fight - horribly stressed -for weeks - and I'm thinking that will create a cycle of producing more and more stress hormones (because of the attack on the brain - the fear and stress is part of every day and night) So, I think it would take a long time to close on its own. ITs a cycle. Stress opens the BBB, the antibodies go through, and they make your kid stressed out, which opens the BBB....

 

How to close it? Well, for us we found DS has mycoplasma. Which can cross the BBB and I'm assuming also create inflamation in the BBB. So we are working on shutting that down. Also we do some NAC and curcumin (this crosses the BBB) and fishoil - also anti-inflamatory.

 

I think once it closes, the system will "right itself" it will no longer find the antigen, and therefore will not create autoantibodies in over abundance.

 

The IVIG floods the body with 2x the antibodies you normally walk around with (or 1.5 if you do that does) so, your system does not need to make any new antibodies - AND the donor antibodies theoretically are sending back the correct signals when they find an antigen - they are asking for the correct antibody where as before they were asking for auto-antibodies because they learned they always found them, so your body stops being told to make the other ones. Its also suppossed to be anti-inflamatory. Thats the theory - but I don't think they know for sure how and why it works.

 

Strep is the trigger because it mimics our own neuronal tissues and incites the body to make those auto-antibodies int he first place. And of course if you have a chronic infection - inflamation will keep the BBB in a permeable state, and they will keep crossing.

 

But I think for a number of "lucky" kids - that only have strep, no other infections, no immune issues, one IVIG can cure them. Especially if they get treated early - before their immune systems "learn" to make these autoantibodies for all kinds of exposures (PITAND).

 

We've had some good reaction to the Doxycycline his is on. He is no longer reacting when he gets a cold, and we've seen a couple minor things disappear. I don't know that titers can always tell you if you had mycoP (DS's Igg elevated - no Igm - but I had them retest Igg - and bingo - it was rising) (it was really really high - dispite 2 + years on full does azith and 2 IVIGS - which really did help in alot, but with every cold post IVIG, I could see him slip backwards a little more - exacerbations longer, more symptoms added ..) the only symptom he ever had was - he had a long lasting dry cough a couple times a few years ago when this started. And he had pneumonia when he was 6 years old (10 when he had first major exacerbation following perianal strep).

 

I'm reading an very interesting book about antibiotic resistance, which sort of explains how some kids initially get better on antibirotcs, but then they stop working. This could be a sign of a chronic infection. According to this author, the worst thing you can do is give a minimal does of antibiotics to someone you know has an infection - because that is exactly how the bugs become resistant. So, for example my sons colonies of mycoplasma were probably initially reduced alot with azith, but because I had him on prophylactic does at the beginning, and because it isn't a great antibiotic for mycoplasma to begin with, it killed off a bunch of the colony, but the ones that it couldn't kill took over. I just hope the Doxy takes care of it. Doc says wait at least 4 months to retest titers.

 

Have you tried swtiching antibiotics?

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I couldn't agree more. My daughter's neuropsychiatric disease/movement disorder, OMS is caused by antibodies to neuroblastoma, the most common childhood cancer. But only 2% of children with neuroblastoma will get OMS, they have the same anti-bodies, but only in the children with OMS, do the anti-bodies make it into the brain. A very small percentage of kids with OMS either spontaneously recover, or get better with treatment of steroids alone or with ivig. The others require chemotherapy and other major immunosuppressants. Of those who chronically relapse, chemo will help until it wears off and the b or t cell population regenerates and goes right back battling the brain. In chronic relapsers, any infection or virus will cause an increase of symptoms or relapse. "Resetting" acquired immunity doesn't happen, unless you eliminate it and introduce a new one with stem cell or bone marrow transplant. I believe the difference in severity and course of oms is directly linked to permeability of the bbb. I also think that factors contributing to permeability are possibly genetic but require a virus or exposure to something environmental to "flip the switch" and lead to an endless cycle of Neuroinflammation. Stress can absolutely cause flares in children with OMS, I have often sent the article posted above to parents whose children came out of "remission" after a seriously stressful event.

Here's a link to an article published recently about a newly found protein thought to be a protective mechanism in ms.

http://m.facebook.com/l.php?u=http%3A%2F%2Fwww.doctortipster.com%2F7071-scientists-discovered-new-multiple-sclerosis-protective-mechanism.html&h=eAQH0UWJJ

Hope this all makes sense, I have flu brain. Thanks for letting me lurk and participate.

Rebecca

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My theory (I dunno that I can call it mine, I'm sure it is just a jumble of what I've read over the years) is that based upon the fact that all kids make more anti-neuronal antibodies when they get strep. They ALL do. median strep cam K is 135 - in normal kids. If during that time that these anti-neuronals are elevated, they have something that is causing BBB permeability, (a chronic infection - or something else that opens up the BBB) or a STRESSFUL event (since the researcher give the mice in the studies the equivalent of adrenaline (or some other human stress hormone?) in order to open the BBB (see, the experiment does not work unless they open the BBB) .

 

When those autoantibodies cross the BBB - they find the tissue that they fit. neuronal tissue. and they attack it. The immune system thinks its doing a good job - it found the antigen, and it asks for more of that type of antibody. So the body makes more of that one, and more, and more...which is why our kids cam K goes way higher than the normal range when they get strep. Its a learned response as well - so the first couple of times the immune system doesn't make that many of these antibodies, and not as quickly, but pretty soon, it makes them when exposed to any virus/bacteria - because it has always gotten a positive reinforcement.

 

Some have said that this may happen - but that the BBB would close. I don't know how long it takes for the BBB to close after a stressful event, but I know that my child was in a state of flight or fight - horribly stressed -for weeks - and I'm thinking that will create a cycle of producing more and more stress hormones (because of the attack on the brain - the fear and stress is part of every day and night) So, I think it would take a long time to close on its own. ITs a cycle. Stress opens the BBB, the antibodies go through, and they make your kid stressed out, which opens the BBB....

 

How to close it? Well, for us we found DS has mycoplasma. Which can cross the BBB and I'm assuming also create inflamation in the BBB. So we are working on shutting that down. Also we do some NAC and curcumin (this crosses the BBB) and fishoil - also anti-inflamatory.

 

I think once it closes, the system will "right itself" it will no longer find the antigen, and therefore will not create autoantibodies in over abundance.

 

The IVIG floods the body with 2x the antibodies you normally walk around with (or 1.5 if you do that does) so, your system does not need to make any new antibodies - AND the donor antibodies theoretically are sending back the correct signals when they find an antigen - they are asking for the correct antibody where as before they were asking for auto-antibodies because they learned they always found them, so your body stops being told to make the other ones. Its also suppossed to be anti-inflamatory. Thats the theory - but I don't think they know for sure how and why it works.

 

Strep is the trigger because it mimics our own neuronal tissues and incites the body to make those auto-antibodies int he first place. And of course if you have a chronic infection - inflamation will keep the BBB in a permeable state, and they will keep crossing.

 

But I think for a number of "lucky" kids - that only have strep, no other infections, no immune issues, one IVIG can cure them. Especially if they get treated early - before their immune systems "learn" to make these autoantibodies for all kinds of exposures (PITAND).

 

We've had some good reaction to the Doxycycline his is on. He is no longer reacting when he gets a cold, and we've seen a couple minor things disappear. I don't know that titers can always tell you if you had mycoP (DS's Igg elevated - no Igm - but I had them retest Igg - and bingo - it was rising) (it was really really high - dispite 2 + years on full does azith and 2 IVIGS - which really did help in alot, but with every cold post IVIG, I could see him slip backwards a little more - exacerbations longer, more symptoms added ..) the only symptom he ever had was - he had a long lasting dry cough a couple times a few years ago when this started. And he had pneumonia when he was 6 years old (10 when he had first major exacerbation following perianal strep).

 

I'm reading an very interesting book about antibiotic resistance, which sort of explains how some kids initially get better on antibirotcs, but then they stop working. This could be a sign of a chronic infection. According to this author, the worst thing you can do is give a minimal does of antibiotics to someone you know has an infection - because that is exactly how the bugs become resistant. So, for example my sons colonies of mycoplasma were probably initially reduced alot with azith, but because I had him on prophylactic does at the beginning, and because it isn't a great antibiotic for mycoplasma to begin with, it killed off a bunch of the colony, but the ones that it couldn't kill took over. I just hope the Doxy takes care of it. Doc says wait at least 4 months to retest titers.

 

Have you tried swtiching antibiotics?

 

 

I like your theories!

 

So, if you go along with that (given that even a normal child with strep can have an elevated Cam Kinase), then perhaps another factor that will influence the development of PANDAS (tipping a child over the edge) would also be the NUMBER of strep infections and (maybe more importantly?) the number of UNTREATED strep infections a child has. Remember that Kurlan paper that found that PANDAS kids were MORE likely to get strep infections? Well, maybe it's a chicken and the egg question. Maybe it's the kid who is more prone to strep, with repeated infections, that gets PANDAS in the first place. And then you have the kids (like mine) that tend to get PANDAS without classic symptoms (no sore throat). So, maybe she gets a fever (but the doc doesn't culture b/c it is presumed to be viral) or maybe it is entirely assymptomatic. Either way, there are no antibiotics, and the strep is there, sitting chronically in the throat, triggering more and more CaMkinase, a perfect storm, just waiting for the "right moment" when stress opens the BBB for a big PANDAS explosion.

 

So, it makes a lot of sense to me that while a child is recovering from PANDAS (in the weeks/months post-IVIG for example) that it would be critical to help keep the BBB closed by avoiding infections (hence the importance of antibiotics, and avoiding getting sick with viruses, addressing chronic infections, or even exposure to strep) *AND* also keeping the BBB closed by minimizing stress. Anything that could open the BBB(which you are hoping to close with IVIG) could re-start that cycle of auto-antibodies crossing the BBB. That may account for some of the variability in success...if 1 IVIG will do it or not.

 

I also agree that giving low doses of an antibiotic can promote resistance...just makes sense to me. The low-doses make a situation where there is a chance that "some" of the bacteria might make it, leading to resistance. With full-strength anti-biotics, everything is wiped out, no survivors.

 

What where the prophylactic doses of Azith you were using?

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MaggiesMoons---when you say "sero negative strep PANS" do you mean that your son doesn't get elevated titers after strep, or that his s. pneumonia titers were all low (immunodeficient)?

 

I, too, don't get the "rebooting" thing and sometimes wonder about these terms...if they are just ONE particular pandas doc who coined the term to explain what is hoped to happen in a very non-scientific way (ie., giving a scientific-sounding word to a slightly educated crapshoot)....

 

norcal mom -- you mentioned something about BBB in another thread and i've been thinking. . .

 

ds7 had a big exacerbation in nov following a MAJOR stressful time at school. we weren't so much on it at first b/c it seemed likely to have some reaction to this trouble. then it got worse and more pandas-like. we treated with intense 'motrin therapy'. that and a little time and he's back to his 'normal'. i pretty much rate him at 90-95%. major issues are overreactions and quick reactions, anxiety avoidance that can be worked with through ERP.

 

he had sudden onset 3 yrs ago -- so now it's mostly a muddled mess of what could be remaining pandas symptoms, what is poorly learned coping and lacking skills from having brain affected for ages 4-7, and what may be general personality issues he'd have anyway.

 

i think i may have been lulled into a sense of feeling he was in a good state of healing. now i question if his body is actually at the same state immunologically and it's mostly due to BBB permeabiltiy or not that we see remission of symptoms -- he always has the autoantibodies circulating and they sometimes get through to the brain; or if it is actually possible to clear the autoantibodies.

 

it is possible his body was also reacting to contact of something at school -- b/c it was fall and there was flu vac day, he was not in school that day but the day after. i don't think he was sick -- i really feel it was the stress. but i guess you can never know.

 

so, ivig clears the autoantibodies, right? but i've never understood how it can do that more than temporarily. . . i just don't get the 'rebooting' theory.

 

where are we with BBB thinking? is it generally thought 50/50 BBB and immune reaction?

 

I too would be interested in any information out there on how to heal the BBB and close it back to what it should be. That seems to be the key in some way to stop the reaction from happening in the first place! I have seen first hand how the Ibuprofen (we use Advil) makes a huge difference, and according to what I have read, the reason it does is because it decrease the BBB inflammation.

 

I am also wondering about the IVIG and how it works long term down the road. My ds8 is now 1 year into it, 50 days ABX and going strong, starting a tapering off next week very slowly to see where we are at now. I would say we are at 97% right now, so I am nervous about the taper but know he has to come off ABX and we need to see if we have cleared the stuff. He is diagnosed Sero negative PANS- meaning he makes NO antibodies to strep. So with the IVIG i am researching now as I feel this may be our next step if he cannot hold his own once off ABX. We have been lucky in that his symptoms are not as bad and milder than some I have read about. So an info or experiences with IVIG would be appreciated as well. I have read what is on here so far on it, but am wondering the success rate long term.

 

My ds8 does not make any antibodies to strep, and his pnuemoccocal numbers are borderline. Low IgE and basophils. And from what I am hearing from some expert Dr.s this is a common thread as well in PANS/PITANDs

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