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Brain Inflammation?

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Does PANDAS cause brain Inflammation? If so what should we be using to treat it? None of the Doctors that we have spoken believe that brain inflammtion is a factor with the PANDAS.

 

Thank you!

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Are you seeing a PANDAS specialist? Many children here respond positively to anti-inflammatories (steroids - not in the case of bacterial infection please, ibuprofen, curcumin, japanese knotweed in our case), which would point toward inflammation as one cause of symptoms.

 

 

Edited by rowingmom

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Strep doesn't cause inflammation - my very simple explanation (that I give to teachers and strangers) is that its the immune system's attack on the brain that is causing it. I relate it to someone repeatedly punching you in the arm non-stop for days and weeks on end...eventually that constant attack is going to cause inflammation/swelling at the site of the attack. Same thing with PANS.

 

Is it really more complicated than that - absolutely. But folks seem to understand that analogy. And if your doctor is saying the PANDAS/PANS is not related to inflammation, then they don't have a very good grasp of the basics.

 

Our "wonder drug" is actually ibuprofen. It can pull my kids back from the brink during a flare and keep them functional. We also try to boost their diets with Omega 3 and foods that are natural inflammation reducers (fish, blueberries, etc...)

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The idea of PANDAS/PANS is that neuropsychiatric problems manifest after infection, and are caused by immune processes like inflammation. I don't think PANS is mature enough where doctors can pinpoint what is occurring in the body, when, and where, and there is much research trying to answer those questions. Generally it is suggested that the Basal Ganglia in the brain is involved in immune processes, and those processes cause neurological dysfunction.

 

I agree with Airial95. If your doctor doesn't believe brain inflammation is involved with PANS, then they know little to nothing about the disease.

Edited by msimon3

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Brain inflammation, kids with Pandas, how does it happen: It is believed, as with Rheumatic fever, Strep, being a highly sophisticated bacteria goes thru a process called "mimicry". In short, Strep being undiagnosed and living in the body for so long is able to mutate and surround itself with a protein that is much like the specific protein that surrounds the cells in the part of the brain called the Basil Ganglia. So the immune system, which is able to produce antibodies that are specific to different viruses and bacterial infections, also attacks that part of the brain. The antibodies think that the cells in the basal ganglia are strep! Simply put, that is what happens. I don't know what your doctor is talking about. Clearly she is not on board with Pandas, and it's etiology....Pandas in similar to Rheumatic fever in this way. There is no controversy over what occurs with Rheumatic fever, so.....if she can't understand this, you need to consult with somebody who can.

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From everything I have read and heard from our doctors is that the answer is not truly known. (I could be wrong, but thus is what I have interpreted from my own research) there are those experts that believe the nueronal antibodies cross the blood brain barrier and attack basal ganglia, causing inflmation. However, experts such as dr t don't buy that explanation. They don't believe that such a huge cell could ever cross that barrier , instead cytokines are what crosses the BBB. Either way, it is difficult to prove the inflammation theory as SED rates in blood work are not shown to be elevated in PANDAS patients. Perhaps MRI or other scans would show, but most of us those tests are not indicated and therefore would not be covered by insurance. Dr Swedos current study is having pts undergo such scans both before and after IVIG treatments. Perhaps when her results are released we will have some cold hard facts. Until then, its anyone's best guess if inflammation is really the cause of the symptoms. Who knows? Maybe this will all bring about new information about how Motrin work. Our neurologist explains that many drugs do mysterious things for reasons we have no idea, and for conditions the drugs were not intended. Until the research is complete, at least many if us know that Motrin does help our children. We can deduce that's because there in inflammation for now.

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To some degree it's semantics, I suppose, but I don't think I'd be too quick to rule out many, many potential causes of inflammation. While I realize that keeping it simpler is probably better when attempting to explain the PANDAS phenomenon to the uninitiated, my current philosophy is "never say never"!

 

I know that it is generally Swedo's take that it is the antibodies that cause inflammation, but since illness of all ilks can cause inflammation in various parts of the body, it seems possible that the mere illness . . . strep, myco p, lyme, etc. . . . could, even absent antibodies, inspire inflammation all on its own. I mean, what about those who are immune deficient, for whom sufficient antibodies are not present, whose various titers do not appear as elevated, but they're still suffering from these symptoms and behaviors? And anti-inflammatories are helpful? Certainly, they, too, are dealing with inflammation inspired by something, but if the antibodies aren't even present, then they're not behind it.

 

JoyBop, just FYI, Swedo already has in hand one exemplary brain scan set (before PEX and after PEX) from one of her first patients that shows inflammation in the caudate nucleus and putamen of the brain prior to PEX, and then reduction of the inflammation after PEX. I think the current IVIG study is in the interest of finding out if similar impacts can be made by IVIG, and not just PEX, but the inflammation "theory," though certainly in a position to be strengthened and expanded upon, already has some empirical "roots," if you will.

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Momwithocd, yes, I realize that brain imaging has been done in Swedos study and is being repeated in the ongoing IVIG study. But as patidnts, unless we are having these imaging tests done ourselves, there's no way to clearly illustrate that our child has it. I agree, its semantics, but it also comes down to insurance issues. A doctor may put a code on a bill stating the patient has encephalitis and refer a patient for a specific treatment. But the insurance company will Likey audit that request and ask to see proof. Most ICUs dont have that proof, only the evidence from Swedos studies and the theories that surround them. Sorry, not trying to be controversial. I'm looking at things at face value for what its worth. The bottom line is, there are no answers right now as to what the source of inflammation is.

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