I want to share with you with an SCLS experience for a child, using this fantastic and useful website. My daughter has been diagnosed SCLS in May 09. She has 4 years old and I know that it is a very rare case that SCLS has been diagnosed to a child. Since May my daughter's doctors, thanks to the help of dr. Greipp, set up a therapy based on theophilline and verapamil.
She had 4 SCLS attacks, the first one in February 08, the last one in April 09. Every attack was triggered by a common flu with fever. In that period, every time she had fever, she had a SCLS attack.
From April to now, under theophilline and verapamil somministration, my daughter had flu two times (first one in August and second one in October) and nothing happened. This is very good for us and for the doctors that have her in care. I know that is not definitive result, but it is a fact that something has changed, in better.
Furthermore, we decided to don't vaccine her against H1N1 flu. Thank you dr. Greipp, for your help, for your dedition, for you research on this syndrome. Sincerely, A. Lapenna