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I've read and it seems pretty common that asymptomatic/uninfected PANDAS children can react to the infections of others close to them. Three of us in the family came down with colds recently which lasted about 1-2 days. No biggie. I seriously doubt any of it was Strep-related. DS15 is on daily abx and Ibuprofen and is showing no signs of illness whatsoever. No fever, no sore throat, no siffles, nothing. As the colds began running their course, he started with a significant (but nothing horrible) increase in compulsive thoughts and associated tics; to the point that we haven't had a full day of school this week. Neuro isn't ready to change abx or increase dosage or even try a 5-day low dose steroid. Says to stay on daily Pen VK (500 mg) and daily Ibuprofen (1200 mg) and to watch over the next "few" days. If we don't get back to prior baseline or if things get worse, it's a second IVIg vs. trying HD abx. Basically thinks it's part of the normal healing process post-IVIg. If it proves not to be, then we act. Says this is one of the most controversial aspects of PANDAS (PANDAS child reacting to infections of others).

 

Have any of you experienced what I'm talking about? Did you treat it? How?

 

If left untreated, was it temporary? How long?

 

Anyone on here understand the pathophysiology of how the above is assumed to work? Why the spike in symptoms w/o the infection?

 

Anyone think this is part of the normal healing process?

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Hey Mike --

 

Yes, our DS14 also reacts to illnesses of people around him. He's been a "canary in the coal mine" for his classmates' strep, and when DH and I came down with the norovirus this past fall, DS never actually actively caught it, but the following week was OCD Ramp-Up City for him.

 

Our pediatrician says that, if exposed, DS will likely mount fresh antibodies because of the mere threat of infection, though he won't actually catch it because he remains on antibiotics. But as the theory is that it is the antibodies themselves that are problematic, "not catching it" is of little solace to me. :(

 

We're currently in another bumpy period, and strep is making the rounds in his school, so I feel certain that's the culprit this time around, once again. It seems to be his Achilles heel. The previous two ramp-ups we've had in the last 16 months, it took him about 2 weeks to level out again. This time though, for whatever reason, it seems worse. I don't know if he's just been under constant assault and he needs a break to recover, or if we need to get more aggressive with treatment.

 

As for the pathopsychology, I'll have to leave that to someone smarter than me . . . maybe Buster, if he's around?

 

I'm not sure it's part of the "healing process." To me it seems like "residual illness," a sign that the recovery of the immune system is, as yet, incomplete. Sorry to be a pessimist in that regard. Perhaps others will have a different perspective and some experience that's more positive.

 

Good luck to you. Hang in there!

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Here's a quick layman's understanding. (Our son is also hitting a rough patch right now, even though he doesn't seem to have an active infection, but his brother and other classmates do.)

 

Once the PANDAS autoimmune reaction is entrenched, anything that causes a ramp-up in the immune system is bad news and will trigger production of the auto-antibodies that target basal ganglia instead of GAS. As Swedo published, any infection caused flares in the PANDAS patients she tracked once the autoimmune cycle had been established.

 

So - for PANDAS kids who are exposed to infection but don't seem to display the traditional symptoms - they may indeed have avoided active infection. But they are still exposed to the pathogen to some degree, and their immune system is "marshaling the troops" to fight it off. That troop buildup includes some of the soldiers that keep injuring the brain with friendly fire, so PANDAS symptoms increase. The immune system may successfully repel the viral or bacterial invaders, but there is collateral damage.

 

Enough war analogies. All our kids deserve a ceasefire!

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WorriedDad--great explanation. But then is there a "cure?" Does plasma exchange take out the bad antibodies and "cure" them? Or will they still be produced when even "exposed" to strep?? Other than keep our kids in a bubble, prophylactic abx then almost seem like a bust. They might prevent strep infections, but kids will still be exposed, and what about viruses?? This is depressing :huh:

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Yeah, it is kind of daunting, eh? Seems like there is some anecdotal evidence that PANDAS kids can "grow out of it" over the long term as their immune systems mature, but nobody really knows. Autoimmune disorders are notoriously hard to cure: I have Crohn's disease, and there is no real cure, only ways to manage symptoms. Based on info from Sammy Maloney and pandas16, it seems like PANDAS kids are still vulnerable as young adults but have milder exacerbations when exposed, as long as they take steps (abx) to mitigate the risk of active or ongoing infection.

 

Personally, I still believe the abx are crucial. Our ds's current "flare" is nothing compared to what he had to live with for the 3 years prior to starting augmentin XR. And this is his 1st noticeable rough patch in about 18 months. Prior to the high-dose abx, he was in the "nightmare zone" on a regular basis, completely crippled and miserable.

 

So I think there's great cause for hope. If PANDAS kids get effective treatment (abx, IVIG, etc.) and are shielded from full-blown GAS infection, I believe they heal. And - over time - there does seem to be evidence that the immune system "calms down" and the autoimmune response diminishes.

 

At least that's what I repeat to myself over and over when I'm tryin' to get to sleep at night!!!

 

 

WorriedDad--great explanation. But then is there a "cure?" Does plasma exchange take out the bad antibodies and "cure" them? Or will they still be produced when even "exposed" to strep?? Other than keep our kids in a bubble, prophylactic abx then almost seem like a bust. They might prevent strep infections, but kids will still be exposed, and what about viruses?? This is depressing :huh:

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Worried dad's explanation is the same understanding I have. That when the body initially detects an antigen but has yet to identify what it is, the body mounts a general defense, sending out many possible antibodies to search and destroy. One antibody has green bullets, one has red bullets, another has blue bullets. Once the body finds the lock and key and matches the right bullet for that antigen (say, green), then the body produces more green bullet antibodies and calls the other colored antibodies back to base (or rather, lets them circulate and die off but does not produce additional blue bullets). This general to specific response may cause strep auto-antibodies to be produced simply from exposure. But once no full fledged response is required, the body should calm down and the circulating antibodies should diminish.

 

There are two more "food for thought" things I want to mention. First, one of the reasons kids are thought to outgrow this, or at least have much milder symptoms as they age, is that the organ that produces T-Cells is the thymus, which is located just behind your breast bone. When you're young, it's a T-Cell mega-machine, churning out antibodies to all sorts of things a young body has never been exposed to. As you hit puberty, the thymus starts to shrink and tho it never completely shuts down, it plays a much smaller role in the body's adult immune system http://en.wikipedia.org/wiki/Thymus So the body is less prone to making renegade antibodies in response to every little sniffle or infection.

 

The second idea to consider - and it is only an idea- held by some in lymeland... some lyme doctors are often asked why some patients with chronic lyme get so sick and others can function fine for years. The theory that's floated around is that some people may carry heavier loads on their immune systems - chronic infections, heavy metals, yeast, poor diet, leaky gut, stress....etc. Then lyme comes along and is the straw that breaks the camel's back. In a healthy person, maybe lyme causes a milder load and the body does a better job of fighting on its own. In a stressed immune system, you reach a point of overload and things start to go awry (and maybe autoimmune).

 

When I was struggling to reconcile Pandas and lyme in my kids, this eventually made sense to me. I can look back to when DS was 3 and had an eye blink tic for a few days around the time he was sick. Then at 4, he had a strange behavior outbust that lasted about 10 days. Then at 5, a tick bite. 4 months later, strep and Pandas. So maybe there were things that were building up until it got to be too much. Maybe his body would've handled strep normally if he hadn't contracted lyme. No way to ever know. But this theory kind of helps me make sense of it.

 

If you can buy into this thinking, then prophylactic abx makes sense because it prevents one more infection from adding fuel to the fire and allows the body to heal from other infections without getting overloaded yet again.

 

Just some thoughts. I don't have any research to support any of this. But it helps me to think of it this way.

Edited by LLM
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I appreciate the line of thinking in this conversation, alot. It feels like a step back and a look at the bigger picture. I always come back to that, this is not a strep infection that is supposed to go away with antibiotics, it is PANDAS, an erroneous response of the immune system to the infection.

 

I also fully agree to the notion that some people already have a larger immune burden (or innate weakness) and that the strep (or lyme...) can simply be the straw that breaks the camel's back, that one last piece that causes the system to crumble or fail. Like you said, LLM, it could be an underlying combination of heavy metals, other infections, toxins, gut problems etc. Thus I also believe its really important to check those things, to do the GI testing, to look for heavy metals, to check for gluten problems and so on, in addition to the regular blood tests for immune/pandas discussed on the forum.

 

A number of the PANDAS kids we see in our practice have big time gut issues, or methylation problems, or ammonia buildup, or celiac issues, nutritional deficiencies, or metals, or other things, that conspire to add up to this threshold effect. My son included. So then add something like strep or lyme on top of that, and the house comes crumbling down.

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hi Texasdad,

 

I agree with LLM and WorriedDad's analogies. I do believe that some kids will eventually out grow PANDAS (just like some kids outgrow peanut allergies), but I wouldn't expect a 100% cure (no antibiotics, no response to future strep) in most kids. I also do believe antibiotics are critical.

 

Just from our experience, we had 1 high dose IVIG just b4 4th grade started (PANDAS dd is in 5th grade now) and she did well until feb. of that year when she got a 1 day fever...then her baseline shifted. We even doubled her antibiotics (to 500mg/day azith) and did a pred burst, which didn't really bring us back to pre-feb status and we eventually did a 2nd HD IVIG towards the end of 4th grade. I wonder if we had done a pred burst sooner after the fever, if that would have made a difference?

 

But, even b4 our first IVIG, it seemed that everytime she got a fever (with 5th's, and H1N1), her baseline would shift. I'm actually guessing she's going to need another IVIG soon....as she has a fever now (the first one in 1 year). :(

 

As far are the topic of "immune burden" or what caused PANDAS to run amuck in the first place...in my dd's situation, I believe her problem was that she had multiple untreated strep infections. She never got a "classic" red sore throat with (what I believe were) strep infections...just fever, +/- vomiting. So, whenever we would bring her in to the doctor when she was sick as a young child, nobody (ever!) offered or suggested a strep test. All fevers were presumed viral b/c of the lack of pharyngitis. It wasn't until she was 7 years old, with full-blown anorexia/severe ocd/bipolar symptoms, and we finally learned about PANDAS, that she ever got a throat culture (we had to demand) which (surpise surprise) was positive.

Edited by EAMom
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As far are the topic of "immune burden" or what caused PANDAS to run amuck in the first place...in my dd's situation, I believe her problem was that she had multiple untreated strep infections. She never got a "classic" red sore throat with (what I believe were) strep infections...just fever, +/- vomiting. So, whenever we would bring her in to the doctor when she was sick as a young child, nobody (ever!) offered or suggested a strep test. All fevers were presumed viral b/c of the lack of pharyngitis. It wasn't until she was 7 years old, with full-blown anorexia/severe ocd/bipolar symptoms, and we finally learned about PANDAS, that she ever got a throat culture (we had to demand) which (surpise surprise) was positive.

 

 

so EAMom -- what are you thoughts -- if the 'average' person will kick a strep infection on their own in about 2 weeks -- do you think the issue is that our kids have multiple strep infections which they do actually rid of the bacteria but it takes it toll or do you think that they have a low-level chronic strep infection that they never get rid of? i guess there's really no way to know and it doesn't really matter -- i just think i'll always wonder b/c ds had known strep at 22 months and 'sudden onset' age at 4 1/2. he was actually treated but, of course, we didn't go back to recheck. i just think i'll always wonder if he had strep brewing for 2.5 years.

 

speaking of that -- why isn't it in the general protocol to go back for a subsequent culture after treatment?

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speaking of that -- why isn't it in the general protocol to go back for a subsequent culture after treatment?

I think the same reason they don't test for strep in symptomless individuals- it is assumed the absence of symptoms means the absence of infection. Seems like a reasonable assumption if you're not looking at it through PANDAS colored glasses.

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why isn't it in the general protocol to go back for a subsequent culture after treatment?

 

The answer is money. My ds first strep symptom is upset stomach and vomiting. No fever. It took me a couple of years to figure this out - after scarlet fever (4 yrs old). Ds didn't have major pandas problems until 7 yrs old. His old ped would lecture me about unnecessary costs when I would ask for a strep test - most of the time I was right. Never argue with doctor mom - I just know when something is not right. It might take me a while to figure it out. B)

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so EAMom -- what are you thoughts -- if the 'average' person will kick a strep infection on their own in about 2 weeks -- do you think the issue is that our kids have multiple strep infections which they do actually rid of the bacteria but it takes it toll or do you think that they have a low-level chronic strep infection that they never get rid of? i guess there's really no way to know and it doesn't really matter -- i just think i'll always wonder b/c ds had known strep at 22 months and 'sudden onset' age at 4 1/2. he was actually treated but, of course, we didn't go back to recheck. i just think i'll always wonder if he had strep brewing for 2.5 years.

 

speaking of that -- why isn't it in the general protocol to go back for a subsequent culture after treatment?

 

Well...my dd (who had FEVER and I found out later, strep in her class in Jan 08...this is when beh. changes started in 2nd grade) still cultured positive 2 mo. later (as did her assymptomatic sister). So, my dd might be considered a "carrier" (since she didn't clear in 2 weeks, although she did have a fever initially, so it wasn't entirely assymptomatic)...I am convinced my dd would have been positive indefinitely if we hadn't demanded testing and gotten abs. OF course there is no way of knowing how long she "carried" strep with her previous infections. She wasn't a kid that got a lot of abs (no ear infections etc)...so I wonder.

 

I also wonder if these sometimes kids might be carrying 1 strain of strep, and then get "hit" with a 2nd strain (or another infection, like mycolplasma) which puts them over the edge.

 

Yup...and your point about rechecking is a good one. Unless a child is checked a few weeks after, there is know way of knowing if that 10 day course of amoxi (or whatever your child got) really got rid of the strep.

 

I think it's not a general protocol to check for strep after antibiotics b/c the medical community thinks if you don't have pharyngitis strep isn't a problem (you know, "just a carrier".) The carrier state is presumed to be benign.

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  • 3 weeks later...

Okay, pretty lame for me to be finally responding to all the posts after three weeks, but we've been in wait-and-see mode. Thanks to all for your feedback and insights.

 

My original post stated that our son had been experiencing exacerbations of symptoms (compulsive thoughts, tics) after a few of us came down with viral URI's although he hadn't contracted anything. Wasn't sure about how that all happens, how long it would last, or what to do about it. Well, here's the outcome, for what it's worth.

 

The day after I posted, DS15 got the same infection and was tested for Strep (swab, blood, active infection, titers) along with his brother. Strep was negative for both. Spoke with his neuro (Dr. Zinser, Dallas) and he wasn't willing to change anything unless we could confirm Strep in any of us, especially DS15. I was also one of those who caught the cold, but wasn't tested. I figured I would if it lingered or if DS15's exacerbation didn't improve or got worse after a week. We did double his Pen VK for one week (increased to 1000 mg daily), but other than that we just stayed with Ibuprofen and vitamins. The day after he contracted the cold, he also started showing symptoms of poison ivy (airsoft in the woods) on his face and torso, which ended up being quite severe. Two 5-day tapered courses of Prednisone were prescribed (low dose, 25 mg first day) to treat the poison ivy. I figured that and the Ibuprofen would do something to significantly reduce his symptoms, especially tics, but they stayed pretty level for a little over two weeks. Of course, I worried every day that it was going to get worse, or we had reached a new baseline, or it would take weeks to get back to our prior baseline, or we'd have to go in for more IVIG, etc. School was spotty (probably the worst thing when they're in high school). Well, the net result was that we toughed it out for two weeks, but he's finally back to his prior baseline and probably a little better than that. It is so nerve-racking to just wait and see and not respond aggressively to everything this disease does, but I now think that sometimes it's okay. I think the best thing that happened in his treatment was the prompt administration of HD IVIG (within 1 week of PANDAS symptoms). I think it's actually working to shut down the mechanisms of this disease, even if it's only a remission as some believe.

 

I thought Dr. Zinser's approach was interesting, even though I didn't agree with it at first. He seems to go with a very classic PANDAS model. Although he understood that anything that spiked his immune response had the potential to also spike his symptoms, he did not agree with treating a viral infection with abx; and steroids, he said, would only weaken his immune system and potentially increase his chances for contracting the really bad bug, Strep. There certainly was Strep going around at the time. He said we would just have to wait it out however difficult it might be, but that he would consider another IVIG treatment (original started 12/1/10) if he didn't improve after a couple of weeks or so.

 

I share all this because I know every little bit of case history could be helpful to someone. Now, whether this was really the right thing to do or if we just happened to get lucky this time, I can't say for sure. Just looking forward to getting out of this cold/flu season and seeing if we can get some sustained 95-100% of pre-PANDAS baseline for a few months, or maybe forever. It looks like he's even contracted another cold, but that seems to be going away after one day and we've had no increase in symptoms so far. Fingers crossed.

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I think the pred helped get your son back to baseline. (We've done pred 2x and both times it took a couple of weeks to see a benefit.)

 

So, the moral of the story is, if your docs are refusing to rx anything...roll your kid in poison ivy and get some pred for the rash! :lol:

 

I'm glad things are doing better. Thanks for the update.

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