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DAY 4 ON STEROID BURST


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On day 3 of steroid burst she raged and then got calmer at night and had less OCD. I though things were looking up, but 2day, which is day 4, her bad thoughts and worries are high and she is aggressive. Is it possible that things wax and wane. My sister said it does not make sense that things don't get progressively better. Can I have ur thoughts?

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PANDAS doesn't heal consistently...so many parents have reported a sawtooth recovery.

 

Listen, this is the brain healing - I don't think you can give a "tin can" answer for how someone's unique brain is going to heal. You can only go with what is generally observed.

 

Don't be alarmed if after three days of calm, you suddenly have a bad rage about something. One of my worst memories of that whole time happened after a few days of calm, she screamed over and over "No mommy no!" and looked sick -- wide pupils, defensive posturing so that she looked like a wounded animal -- the only thing I could do was find a way to compartmentalized my feelings into a different place and go about giving her that bath that she was screaming about. I just kept telling her calmly over and over, "I love you, and your going to get better." But I was thinking to myself, "This child needs to be in a hospital." -- this was in either week 2 or 3 of the first steroid taper for her.

 

Hang in there...I'm sending my prayers and positive vibes for all of our children!

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