tics worse even after IVIG

[momofgirls]

Faith,

Dr Bouboulis has suggested monthly ivig for six months. He typically doesn't do as high of a dose as Dr K but feels ivig over a longer period of time is beneficial and is willing to up the dose periodically if needed. Yes, we saw relief in symptoms after each steroid burst.

This is the 3rd steroid burst. He did a 5 day then tapers the dose over time. He is a very good doctor and not extremely aggressive and felt the steroids were harmless in short term use to help get us through the rough spots. I don't think he would prescribe them otherwise.

 

 

 

So the steroid helped the bumpy time after the first IVIG? why did you go with another IVIG? was it planned that way or the doctor felt another would be beneficial?

 

I don't know anything really about steroids, but is it okay to do 4 in one year? are these 5 day bursts?

[faith]

momofgirls,

how is your daughter doing? Are the tics still there, have they settled at all, any change? when is your next IVIG,?

 

 

-Faith

[momofgirls]

Hi faith thanks for asking. She is much better! I hate to say that in fear of jinxing her but the past few days she started improving. Today was a very good day for her. I have a few ideas why this has happened but am not sure which is correct. Can't post on it at his time.

 

momofgirls,

how is your daughter doing? Are the tics still there, have they settled at all, any change? when is your next IVIG,?

 

 

-Faith

[faith]

good to hear that. (did you mean 'why it happened' or 'why it got better'??) update us when you can.

 

Faith

[momofgirls]

Both.

Her next ivig is wed next week. I will upadate when I can.

Thanks again for asking.

 

good to hear that. (did you mean 'why it happened' or 'why it got better'??) update us when you can.

 

Faith

[sf_mom]

I am thrilled to hear your daughter is doing better and I will add the Corsa continues to do well!! We had a strange '4 hour' flair of TICS yesterday. It was only clearing of throat/coughing softly but it was fairly consistent in the afternoon (morning he was fine no tics) but once he ate dinner they went away (he hadn't had much for lunch). It was very strange and it had me worried yesterday that things were slipping. TODAY back to baseline if not better!!!!!! He is happy, happy, happy.

 

-Wendy