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PANDAS without tics or OCD


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Background: My 9 y/o son has not been diagnosed with PANDAS as of yet but I've had many people tell us that this could be his issue.  He has be diagnosed with first anxiety, then intermittent explosive disorder, and then oppositional defiance disorder... the diagnoses just keep piling up with no end in sight. All from a sweet, well mannered, loving, introverted kid. He doesn't seem to have any tics and his ocd tendencies are so small that I'm not sure if I'm just seeing things.  When I research this it seems that most people describe PANDAS as a person with either OCD or tics and also the issues my son has.  I feel like I'm grasping at straws and I don't want to go down the wrong path if I need to spend my time researching and better understanding his known conditions. 

Also, I do have a pediatrician appointment coming up in a couple weeks in which I will ask for blood work and I have an appointment schedule with Dr. O'Conner in Charlotte in April.  I'm being proactive about it but I'm just wondering if there are any other kids who symptoms are similar to my sons and they also didn't present with tics or OCD initially. 

Thanks in advance. 

 

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Techically, if they don't have OCD or tics specifically with strep as a suspected cause, it isn't called PANDAS.  But you could still call it PANS, if he has either OCD or restricted eating, and two of 7 other symptoms, per http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/

But, these clinical boxes that they create are specific and sometimes more narrowly defined that is the truth, either because they were first defined with research in mind, or they just didn't know enough about how it worked to include other things that have the same mechanism.  That's the way the definitions are - they are not necessarily perfect.  Take for example, all the diagnoses that keep piling up ... are they really all correct, and totally independent of each other?  No, they likely have the same root cause in common - PANS could explain that (and other symptoms) as one cause.

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I have two kids with Pandas that were diagnosed 9 years ago by Dr. L. Both have very different cases and symptoms. My son (who was 5 at the time) sounds just like yours with symptoms. He also has a Lyme co-infection found later. No OCD symptoms at all but a lot of aggressive behaviour , lashing out and definitely anxiety. We couldn't get him out of the car or into school for quite a while. He definitely had strep with titers and strep test confirmed it and was caused it at the time of PANDAS.  Yes you can have PANDAS without OCD. Both my kids are doing pretty well now. It was a couple of very rough years but now manageable. Good luck. Feel free to contact me if you would like.

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