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  1. My 14 y.o. son has had PANS for about 5 years. Fortunately he has been the mildest of my three kids and the easiest to manage. Initially, we only needed to treat the initial illness and his OCD and anxiety symptoms would resolve. For a few years he only had a mild low level anxiety and OCD that was what we considered "manageable", especially considering what we were dealing with the other 2 children. About 2 1/2 years ago it got a little worse where the anxiety was more consistant. So I took him to our PANDAS specialist and got long term antibiotics and more testing done. The antibiotics didn't seem to help and his Lyme test was highly sugestive. So off we go to the lyme specialist where his sister had already been. At that time he was diagnosed with lyme and most likely bartonella and started treatment which seemed to help him right away. During this time we had also started him on low dose Lexapro while waiting to get into the LLMD because his OCD was so bothersome and we had to wait a while. With all the treatment, things settled down and he had been doing really well since that time. He is wonderfully sweet boy who makes straight A's. He is in the gifted program at school, plays sports, is very social and never ever a problem for me. About 3 weeks ago he told me he felt his anxiety was coming back. I talked to his LLMD and she recommended a herbal supplement for anxiety. This didn't help at all. I tested for strep and it was negative. About a week later he comes and tells me that for the last month he just doesn't have any real feelings....can't feel happy or sad, just feels disconnected from everyone. Said things that used to make him happy, don't make him happy any more and he just can't get excited about doing things with his friends anymore. So I call his doctor and we increase the lexapro. 3 days later he tells me he feels like he has no reason to live. OK...another call to the doctor and she say back off the lexapro and lets call psychiatry. Meantime, I'm still talking to the LLMD who has me asking him questions about physical issues. He denies any physical changes and the LLMD doesn't think it's a Lyme/bartonella/PANDAS flare. I have an appointment with a Psychiatrist on the 27th. I have no idea if he is PANS friendly or not. Frankly I don't need validation at this point, I just need someone to save my son. I won't allow anyone to take him off his antibiotics. I just need help to titrate him off the lexapro and start a different SSRI. I have a good friend who is a physician (my next door neighbor). In talking, we both believe this is most likely a side effect of the lexapro. He says he has seen it in his practice where people complain that the lexapro makes them feel numb, without feelings. However, because of his extreme anxiety and some of the feelings he has expressed to me lately (feeling extremely overwhelemed with moving to the high school, etc), I am very worried about just abruptly stopping it all together. I have decreased the dose but it hasn't seemed to make a difference. I talk to my son every day and he is usually so happy. Last night he cried so hard and it broke my heart. I made him promise he wouldn't hurt himself. He says he isn't thinking about anything like that but how do you know for sure? I don't know what to do to help him. This is so out of character for him. He always worries about doing things right and pleasing people but he is usually the happy one in the family. This is just killing me. Does anyone have any ideas on how to get us through the next week? Dedee
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