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Update from the newbie


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Well my son just started a second round of steroids. He is also on a daily dose of Bactrim. His first round of steroids was a burst, first day was Tuesday 12-23 and we had not seen improvement until that Saturday. He finished the burst that Sunday. Then on Thursday the 1st, his tics started flaring up again, but not all the way back to their pre-burst level. On Tues the 6th we started with the same steroid, but only once a day, in the morning at 4mg. I know he can't be on it too long for the sake of his pituitary and adrenal glands. By that same night the tics reduced dramatically. I would say its now at about a 70-80% reduction. I will update again later, once we come of the steroid again and see how it goes afterwards...

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Most don't use steroids as an ongoing treament for PANDAS (too many side effects) but just as a tool to see if IVIG will work. We found Ibuprofen to help (with the Azith), but you can't do it with the steroids. We did try Aleve (Naproxen) early on...don't think it worked as well as ibuprofen.

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How much Ibuprofen were you using? I wasn't seeing any effect with motrin, but it was the OTC dose. I had planned on asking my Dr about naproxen, but hadn't yet. Does anyone know anything about budesonide? I read that it is used in place of steroids like prednisone, since it has less side effects...

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We just gave 200mg (1 OTC tablet, dd was 45-50 pounds) once daily. I don't think it did anything for tics (not our biggest problem) but noticed she would often fall asleep after a dose, ate better (our biggest problem), and seemed more "normal". I wonder if there was some synergestic effect with the Azith. and Ibuprofen...both are anti-inflammatory and these kids have very inflamed brains.

 

The difference with the ibuprofen wasn't huge, but noticeable...maybe 20%.

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I should probably add that we could have given the dose 2-3 x daily to get round the clock coverage but decided to only give it in the am. I was a little worried about GI side effects (from the combo of prozac and ibuprofen) so erred on the side of caution. We gave it in the morning so it would be in effect when she was eating/etc. during the day. If she had trouble sleeping at night (like a lot of PANDAS kids do) I think we would have given one at nightime too.

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