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bluevalentine

Question on Pandas symptom presentation

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HI, THis is my first post and I will try to stay on topic and make it quick. My DS has a list of different dx which ultimately equal behavior problems and self control issues. The mommy red flag has always had me looking hard at Pandas as a possiblity. With all his other issues it is difficult to extrapolate the multitude of behaviors, but for the raging I wonder if this is part of it;. My question is that while he's a quirky little guy, when he is off the chain, he is truly off the chain.....but is capable of pulling himself together in between bouts of raging. Is Pandas something that is a constant uninterrupted problem, or can it be somewhat intermittent but with a "backdrop" of elevation. He definitely has a negative tilt but when he has the slightest fever or known exposure to strep he is completely non-compliant and aggressive. Not sure if I am making sense :-(

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From what I have gathered from this site, it is my belief that what you are describing is normal for a PANDAS patient. I was/am skeptical of my PANDAS diagnoses because mine seems to linger on and on, while most like your son seem to only react when strep is active, but from what I have gathered age has something to do with my situation.

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I've been trying to decide which tests to do for him. Believing that there has to be a natural way to help him and not all the anti-psychotics that are being offered. I just notice that his behaviors are much worse when he has even a tiny fever and almost always when he has been around a strep infection. He has an autonomic dysfunction also so he doesn't have the physical signs of illness like most. My daughter had a very high fever when she had strep. So for now I am trying to out two plus two together. He really struggles at school and I am terribly frustrated trying to get them to understand that even a 99 fever will cause him to rage. So "defeated" is definitely a word for how this all makes me feel, so I can only imagine how my son feels.

Pretty much decided that the Cunningham Panel will be my first "off the norm" test for him.

 

Thank you for your reply :-)

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From what I have gathered from this site, it is my belief that what you are describing is normal for a PANDAS patient. I was/am skeptical of my PANDAS diagnoses because mine seems to linger on and on, while most like your son seem to only react when strep is active, but from what I have gathered age has something to do with my situation.

And from what I have read it is different for so many that this diagnosis is about like his autism diagnosis. So varied in presentation. Ugh!

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From what I have gathered from this site, it is my belief that what you are describing is normal for a PANDAS patient. I was/am skeptical of my PANDAS diagnoses because mine seems to linger on and on, while most like your son seem to only react when strep is active, but from what I have gathered age has something to do with my situation.

 

I feel the same - the fact that it's always thre (although it does go up and down, but it's always very much there) makes me feel that it can't be PANS. That about it being relater to age seems as if it could partly make sense of it. How old are you? I'm 26 and developed these symptoms when I was 13.

Edited by Wombat140

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From what I have gathered from this site, it is my belief that what you are describing is normal for a PANDAS patient. I was/am skeptical of my PANDAS diagnoses because mine seems to linger on and on, while most like your son seem to only react when strep is active, but from what I have gathered age has something to do with my situation.

I feel the same - the fact that it's always thre (although it does go up and down, but it's always very much there) makes me feel that it can't be PANS. That about it being relater to age seems as if it could partly make sense of it. How old are you? I'm 26 and developed these symptoms when I was 13.

I am 19. I developed this at 18 after Scarlett fever. Anxiety has gotten better but my thoughts haven't. Really feeling hopeless.

Edited by DC24

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