Reaching a Crossroads

[eljomom]

what is the craziest thing arial95, is that the culture of the tonsils came back negative!! Is he testing positive ONLY on rapids? I have "heard" (again, total hearsay) that there can be a false positive on a rapid but can't remember what it was.......but then again, if he's also having pandas symptoms, that's a different story. Gosh, so frustrating I can only imagine...

[LNN]

Ariel,

I just posted this on another thread but after refreshing my memory, this might be a good one for you to read. It's very long, but full of info and ideas on what might be keeping that chronic strep around in your DS...

http://bacteriality.com/2008/05/26/biofilm/

it should come as no surprise that the pathogens we harbor are seldom found as single entities. Although the pathogens that cause acute infection are generally free-floating bacteria – also referred to as planktonic bacteria – those chronic bacterial forms that stick around for decades long ago evolved ways to join together into communities. Why? Because by doing so, they are better able to combat the cells of our immune system bent upon destroying them.

 

One treatment protocol against biofilms to antibiotic pulsing. You go off abx for three week, which allows the bacteria to emerge from the biofilms and move about freely. Then you go on abx for 3 weeks - ambushing the bacteria. Then off, then on. The first few pulses are rough, but bring really positive results. We may look at doing this in the coming months.

 

The other tactic is to take something that weakens the biofilm, like NAC or nattokinase, and also take a combo of abx at the same time. So you whittle away the film and then have abx in your system to kill what gets released from the weakened film.

 

In either protocol, detox is critical, because dying bacteria release toxins that can cause as much or more harm than the bacteria itself. If you want more info, you can PM me or post on the lyme forum. Members there probably have experience with both of these and not everyone on there comes to the Pandas forum. This is not to say your son has lyme. I'm only suggesting he may have strep or other bacteria or virus that's cloaked in a biofilm and this article may give you some ideas.

[MichaelTampa]

I also believe kids can have PANDAS without necessarily having an underlying immune def. I think many (most) PANDAS kids don't have a good (normal) immune system against strep. That isn't the same as saying their immune system is deficient overall.

 

Good reminder here. If the antibodies the body is making are busy attacking the brain, perhaps there aren't any/enough actually dealing with the strep.

[airial95]

what is the craziest thing arial95, is that the culture of the tonsils came back negative!! Is he testing positive ONLY on rapids? I have "heard" (again, total hearsay) that there can be a false positive on a rapid but can't remember what it was.......but then again, if he's also having pandas symptoms, that's a different story. Gosh, so frustrating I can only imagine...

 

He does usually come back positive on the rapid, and other times, even when the rapid is negative, he has the other clinical (non-PANDAS) signs of strep - elevated heart rate, "thingies" on the tongue (my totally accurate medical term ), there's one more thing around the eyes my doctor mentioned as clinical for strep, but I can't remember what he called it - but the white parts (again, very technical) get discolored and slightly blood shot and he gets really drawn around the eyes so much so that he looks sick.

[airial95]

I also believe kids can have PANDAS without necessarily having an underlying immune def. I think many (most) PANDAS kids don't have a good (normal) immune system against strep. That isn't the same as saying their immune system is deficient overall.

 

Good reminder here. If the antibodies the body is making are busy attacking the brain, perhaps there aren't any/enough actually dealing with the strep.

 

 

Our immunologist put it to me this way - which I thought was a simplistic, but interesting and understandable way of thinking about it: what his normal bloodwork is showing us is that his immune system may be making the appropriate antibodies, and making them at the right times, so everything looks normal. The problem with PANDAS, is that the antibodies that are being created are broken, so they misinterpret signals. Since the blood work can only identify if the antibodies are being made appropriately, we can't see that they're broken.

 

Of course, she said this pre-T&A when the answers to all of our chronic strep problems were hiding there!

[airial95]

Just a quick update since he tested positive again on Monday, our pediatrician recommended we call Dr. M's office that day to see if they wanted to try something other than the Augmentin he was prescribing - and also in light of the new infection if there were any additional labs they wanted run prior to him starting abx.

 

They initially said no, but called back yesterday afternoon and wanted new titers run and a few other things (I was travelling for work yesterday, so they had to fax the orders directly to the lab so I didn't see what else they ordered). They wanted them done by today at the latest, so my poor little guy got to wake up to a surprise trip to the blood doctors - he wasn't happy about it.

 

He's been at my dad's house today (kept him home from school), and my dad said that he's been sleeping since around 10 AM. Poor guy

 

My post regarding our appointment to the immunologist above reminded me also, that while all of his labs were normal before, he did still have his tonsils, so the first, and most likely cause of chronic infection was likely to be there, now that they're gone, maybe they'll start looking for other things.