Hi I am new to this site, I only wish I knew about this three and a half years ago when my daughter was first diagnosed with SCLS. She has had treatment with Prednisone initially, however, I learned about all the side effects of this and asked her doctors if there were any other options and she has been treated successfully for the last two and a half years or so with IVIG. Our story is very similar to yours, she had recurrent episodes of edema and such, that we were told were viral or they would just go away, we were told for months that the swelling was due to allergies but come to find out that was not the case. So here we are 4 years later. We will keep you posted on her progress. Hope you do well.

Thank you so much for letting us know about yet another unusual pediatric case. We pray that your daughter will outgrow her SCLS, or at least be able to keep her illness under good medical control with the monthly IVIG infusions. There are very few patients in the United States who are getting IVIG, because it is very expensive and most insurance companies refuse to pay for it , so it is invaluable to get yet another report that IVIG seems to be working. The more evidence we gather, the easier it will become to get insurance coverage for all of us who need it because other medications have not worked, or have not worked as well or as long. Please encourage your daughter's doctor to write (for publication in a medical journal) a case report on his (so far successful) experience with IVIG for a pediatric case of SCLS. Nobody has done it as of yet.

We brought our son home froma recent hospital stay last Monday (12/28). he returned to school today only to have the nurse call me to tell me has a fever, productive cough and chills. This is how his most recent attack (12/18) occured. Can there be attack this close? We are in the process of figuring out what course of treatment to take with him. we were a day away from IVIG during the last hospital stay. When we meet with his DR tomorrow I will have all the info about treatments for kids from this website with me to show him. thanks for info. Hope your daughter continues to do well.

I see you post only today. Hope everything is ok now for your son.