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The Thing Is...

The thing is, before all this, Ewen has been such a joyful person. He is the kid who is up for anything and who other kids like to be around because he loves to play sports and also to learn and participate, especially with science.  He participates in discussions in class and is funny and confident but not annoying. He is kind but not sappy. He has a strong sense of justice but also enjoys snarky jokes. What this PANS seems to have affected the most is his keen awareness of everything around him, his joy and his confidence. If you look at him now he seems like a regular kid...maybe a bit twitchy but he still plays hard and works hard. He socializes. But as his mother I see that he has a new edge to him. He is just not completely happy. He has a wall up that protects him from the world and he is in constant defense mode. He knows that he can be distracted from his dissatisfaction by looking at screens so he does it more now than he has ever done it before. It makes me want to ban all screens and maybe that would reset his brain? But I don't want to cause him a type of distress that I can't understand or know the true depths of because I am not him. I feel like I should trust him and let him do what makes him feel good.

At the same time, CBT was all about doing what is NOT comfortable and challenging yourself and that was amazing for his recovery. So I just don't know what to do. I feel like I work hard to make sure he is happy and as comfortable as can be but maybe what seems like good parenting is actually horrible parenting. Maybe I should take away his computer and his phone and make him be aware of the world around him. Maybe that will help him. I don't know. It doesn't seem right in a way and in another way it does.

For now I will not take his screens away and I will continue to hope that he will come out of this, like he did after the first week of Zithromax for a short while. I had the best mothers day ever because I had Ewen back for that day but his happiness and awareness started to fade again after mothers day.

I suppose I will ask his pediatrician if there is anything else we can do for PANS.

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