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Could it be PANS?


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A little background...Oldest ds, now 15, has always had tics since he was little. Still has them but not as severe as he used to; tics when stressed, reading, watching tv, and driving in the car. Youngest ds, 8, had a sniffing tic since he was a toddler. Within the last couple of months, though, he has developed more complex tics. He stretches his neck back almost like a swan. This has been for several weeks. Prior to this one, he would hold his hand in front of one eye then the other. He now does both. In school, he has been a little more distracted. Not sure if this is because we are so close to summer. This ds had his tonsils and adenoids removed a year ago due to reoccurring infections. Some infections were strep but most were not. I tried to eliminate dairy, though not completely and saw absolutely no change. We eat a clean diet as I am familiar with this because of my oldest. I thought about possibly Lyme disease as he is in the woods and we have found deer tics but I have not seen any indication that he is infected. In looking at the PANS info, he doesn't seem to fit the profile, if there is one. There has not been a sudden change in behavior. I'm stumped. I don't know what to do. I'm so stressed and upset. I fear that I am headed down the same path as the oldest. I don't know what to or how to help him. Any advice or insight would be appreciated.

San
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PANDAS/PANS is becoming a murky diagnosis as more and more people are showing evidence of neurological symptoms due to infection or immune compromise. So I can understand your confusion. By definition, PANDAS is caused by strep, and PANS is caused by anything. The first flare is classically an abrupt onset but often people miss the first onset and a wax and wane pattern can be seen. So I would not rule out PANS at this point. I think it's very reasonable to go ahead and investigate the possibility.

 

Your first step would be to visit the PANDAS network site and find a provider that could assist you. That provider would likely order a slew of tests to determine if indeed there were any active infections, including lyme, mycoplasma, strep.... Obviously there are indeed other triggers besides infections- micro/macro nutrients could be out of whack due to the environment, mold, or other genetic issues (sometimes supplements meant to help kiddo -- can actually make them worse). Allergies are huge player as well. Gluten and dairy as you mentioned can be pro-inflammatory and even if there is not an immediate response-- removal can sometimes ease the burden on the immune system. There are a host of gut issues that could be addressed as part of this process.

 

This journey is about peeling the layers to find root causes. It's exhausting but not without hope. So many people have indeed been helped!

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