Hello fellow SCLS patients and family, my grandson Levi who will be 3 in a couple weeks had a severe episode in March 2015 and it was the most frightening thing I have ever experienced, we almost lost him. I am extremely pleased however to state that he has been episode free since. He has had 4 monthly infusions of IVIG and is now going to a 6 week cycle. His only side effects have been fatigue and a little vomiting the next day. We are very encouraged by these results so far and are grateful to all in the SCLS family who have supported us.

Hi kgoldade. I am wondering why you are moving to a 6 week cycle. There is pretty strong evidence that either a 2 or 4 week cycle is best. Just a thought. Perhaps there are other compelling reasons. All the best.