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It's been a long while since we checked for myco-p, strep and the usual culprits and it is probably time we get them all checked again. ( STILL trying to get hold of Dr T., but that's another story) Anyway, I wonder, can you have no infection generally and still be left with the PANS, severe OCD symptoms? Really, since my DD's original exacerbation in 5/2012 she had all the classic PANS symptoms, the frequent urination, the OCD, the separation anxiety, the deer in the headlight look, etc.

 

Now we are left with severe intrusive thought OCD of the worst kind. But I wonder if it is possoible that there is NO infection anymore, just a wacked out immune sytem that left us with this yuck. Ok.. not a scientist here,but is EVERYBODY on this board assuming that we must have some type of infection, strep, lyme, myco etc for PANS symptoms to continue?

 

THANKS!!

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No, not true. My DS6 reacts with a flare d/t being around someone who is infected, but he does not get infected himself. His antibodies respond to the outside stimuli. In addition, he has some minor symptoms that have never gone away, even when he is healthy with no infection of any kind in his labs, and when he is not exposed to sick people. Other people may say that Lyme or something similar may be hiding out, which is possible, but he has always been classic in his response to Strep. I will see a flare start, then get a call from the school a day later telling me that a class mate has Strep. He does not get ill and is on major protective abx. Pretty sure this is what they refer to as the "freight train leaving the station". In theory, a disconnect betw. the antibodies and immune system according to Dr. B.

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That's interesting Beeskneesmommy. Our DD also shows strong symptoms when people in the home are sick. And even the apparent common cold! I recenly took her off the abx after 2 yrs and 4 months of it, b/c the OCD and suffering were still so strong while on it. It was a high dose too. Now that she is off of course, there are many colds in our home and she got one too. Worse OCD and sorry if TMI, but while everyone has regular goobers, hers are a starburst orange color.... :wacko:

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I can speak only from my experience and it's probably sadly outdated. My DS, now 22, had his first exacerbation at 6.5 following chicken pox--constant erasing and rewriting because it wasn't perfect. That lasted several months. When he was 7 he had strep treated with conventional 10 days of antibiotics and there followed a couple of months where he repeated one nonsense word over and over. Then at 7.5 he had strep again, treated conventionally, and had a huge cascade of tics, OCD that lingered on for at least a year and a half. At 9.5, another strep and another cascade. We found a ped who put him on daily abx (amoxicillin and probably not strong enough), and did a year and half of ERP starting at 11, when NIH dx'ed him but thought him too chronic for their study. He didn't really recover until he was 13.5. Even then, I now suspect stuff lingered on, but they can become quite skilled at hiding OCD.

 

So my jaundiced view is that in the scheme of Pandas, still having symptoms after four months is par for the course. But I am not sure how relevant it is if you've been very aggressively treated the exacerbation when it happened. Sadly, my experience in that is limited.

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From what I have read, it seems that it is quite possible that the autoimmune response of PANS can continue even after the infection has subsided. The inflammation is the main initial culprit, from what I understand, as it allows the antibodies to cross the blood brain barrier and mistake basal ganglia cells for strep. If the antibodies mistake the basal ganglia for strep (or some other infectious agent) then it is possible that they will continue to reproduce auto antibodies and the inflammatory process will continue - even after the initial infection is gone. The body thinks there is still an infection. I know this is an overly simplistic view of things, but it is my way of making sense of it.

 

If symptoms continue even after all major infections are gone, then I think you need to:

 

1. Check for infection in family and friends as the child can produce antibodies in response to the threat of infection (others have mentioned this_

 

2. Be sure to check for difficult-to-find infections, such as lyme.

 

3. Do whatever you can to reduce inflammation, including diets, some antibiotics, and other supplements.

 

4. Ask the doctor about a course of steroids (if there is no infection), as steroids can stop the autoimmune process.

 

5. Consider IVIG if all else fails and the child continues to have a severe autoimmune response.

 

Just my thoughts on this... Best wishes!

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ABSOLUTELY pandas/ pans can an will continue even after infection is cleared. In fact, somewhere it was studied that pandas symptoms can start up to 8 weeks after infection!

 

For my kids, they typically are symptom free (or 97%). When they get an infection (strep, cold, flu, etc) they recover from infection normally, and then pandas symptoms appear overnight, and start to snowball. Typically they do not recover from pandas flare up unless we do some immune/ inflammation dampening (ie steroids).

 

Of course, ongoing infection would be a major problem- but, if you have taken all reasonable steps to clear infection and test for infection, and symptoms are present, I would focus on immune treatments.

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Wellif you have a good relationship with your vet explain the situation. see what they say. Depending onwhat you want, youcan ask just to treat the dogs in the house without testing or test. For testing, yourdog will need anesthesia. Itsnot a cheap endeavor but I am so glad I know it was my dog. It is not possible to get a culture from a dogs throat while awake. They will doit while under. They send it to the lab. If it comes back positive it also comes with a sensitivity test which tell the vet which antibiotics will work. my dog did over 10 weeks amoxi. There is another way that I havent tried. There is a lab called zoologix that you can have a blood test sent to them and they check for the DNA of strep pyogenes. its about $80 and you actually dont need a cet to sign off. I wasa tech soI can draw my own blood and send it. I want to say that it cost about $350-$400 to have the culture under anesthesia. I am not sureI trust the blood. I might do both at the same time just to see.

 

If your vet has q's I am happy to explain it,but I am sure they can figure it out. I would even fax my dogs result so your vet would see its possible. Tell him its reverse zoonosis. We give the strep to the dog and they carry it. My dog had no symptoms at all.It was a hunch I went on.

 

If your broke just treat all the dogs. if you have a few bucks culture the dog. PM me if you need help

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from our experience, i definitely think so. at initial onset, my ds had high titers and an active infection. we went on to discover multiple other infections, bacterial and viral. we've done well with eradicating - or downgrading - them. still seem to have some issues with parasite but seem to be working well on that, too.

 

last year, with infecitons looking good, ds had 2 harsh exacerbations. i believe one in the fall due to extreme stress at school horiible situation resulting in home teaching for rest of the year. in the spring, another one i believe due to an allergic reaction to sunscreen. -- i know sounds crazy, but he had a rash reaction that lasted about a week and all signs lined up timewise. each was probably about a 4-6 week exacerbation.

 

it stinks but i think once it's begun, any challenge to the immune system can bring out symptoms. we recently added a new dr to our team b/c i believe this but also realize we can't live in a bubble. we're currently working on a zinc deficiency/copper imbalance to try to help balance things out.

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