steroid burst

[chrisw]

My son began a steroid burst on Mon. night to continue thru tomorrow morning. The last 3 days have progressively gotten better. I actually had some really good extended conversations with him where he maintained his train of thought throughout. How refreshing! He is more focused, more like himself, less hyper, less tics, less urinary frequency, and less anxiety. He brought home 3 tests today that he took this week....all A's. Those of you whose kiddos have done this, how long did this last for you? It has been so nice. Have any experienced long term results (symptoms alleviated) from the steroids?

Thanks,

Christie

[amy s]

I have heard that it can last anywhere from 2-3 days to up to 90+ days. However, when my dd did her steroid burst the positive benefit lasted only as long as she took the steroids and was over immediately after it ended. Good luck! Hopefully you will have long lasting results for your child and now you have a more definitive treatment plan! (Being that if the steroid burst works...you have a better chance of IVIg working!

Take good care!!!

[T_Mom]

Hi Chris,

That is great news-- Just wanted to add that from our experience, with an older child (11), it can take a little longer to see the full effects after a steroid burst. (Dr. K. had told us this prior to our first burst this summer--and he was correct.)

 

We just did one (second one) and our daughter had a very good response about 3 weeks after the steroid burst started. She is about 98% clear. Dramatic change in drop of OCD, clear thinking, and focus.

 

A dramatic change was seen at school. A week ago her teacher told me that our daughter was able to do her schoolwork once more, math and writing were done correctly and in class. We see a dramatic difference in her handwriting. She has not been this clear for months.

[chrisw]

Thanks for the replies. I guess it is different with every child. I haven't put this out there yet, but we are scheduled for IVIG with Dr. K for next week. He will have his infusions on the 17th and 18th. My son is 9 and will be 10 in Sept. and we just didn't want to wait any longer. His most debilitating symptom is separation anxiety and fears in general, although he has MANY of the other PANDAS symptoms, they are on a more moderate level. I am very hopeful and trusting God for a good outcome. I will definitely post of our experiences in Chicago.

Christie