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Need Advice - Recent PANDAS Diagnosis


MPatti

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I don't really know a ton about steroids as we didn't do the "confirming" burst for diagnosis. Dr. K diagnosed my daughter. He was worried she had a current infection, so he skipped the steroids and put her on antibiotics. Hopefully, someone else can answer your questions.

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My DD's story is similar to your Son's. She was also diagnosed early and treated with a month of steriods by Dr. L. She didn't have noticable tics but she had a severe behavior and cognitive regression. We saw improvements with the steroids, but it wasn't until the very end of the month that she really dramatically improved. Hang in there. I am eternally grateful she was treated early because we have been able to manage this mostly by steroid tapers.

 

This was about 5 years ago. Now she is going to be 11 yrs old and is doing so well! I won't say she's 100% because we believe she will always have a low level of anxiety, but she deals with it so well. She is the neatest kid, and I'm so grateful that I've been given the privilege to be her mother.

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Karen - so happy to hear your daughter is doing so well! How long after the onset of symptoms did you receive treatment?

 

jenann - thanks for the info about lyme - I will definitely do some research. I have removed ticks from my son before, but I have never noticed a bulls eye rash or an illness after removing a tick. So glad your son is improving so much! By the way, we also have a Boxer - best dog ever!!

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Karen - so happy to hear your daughter is doing so well! How long after the onset of symptoms did you receive treatment?

We knew something was wrong by mid-April, she started prednisone in the beginning of June. By July 4th week she was about 98% recovered with the majority of the recovery happening that last week. It took until Sept for her to shed some minor OCD, but it took about a year for her creativity to return.

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