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Thursday, July 21, 2011

Sabril (Vigabatrin)

We just came from Cardinal Glennon, where we signed the paperwork for starting Sabril.  This is a medication proven very effective in stopping Infantile Spasm seizures.  It has only recently been approved in the US, but has been used in Europe and, I believe, Canada for many years.  We are very excited about beginning this!  I have very good feelings that this will STOP Levi's seizures!!  The paperwork will be faxed to them today or tomorrow, and we will hear from them probably tomorrow, but Monday at the latest.  As soon as they verify our information they will ship out the medication. So we will be starting Sabril by next week!  This is much faster than we anticipated.  We aren't yet sure if we will continue Topomax while on Sabril, or if we will wean it down a bit or all the way.  I kind of hope we keep the Topomax, it really has helped a lot, and I would think the combination of the two would take them away quickly.  Please pray with us that Sabril stops the seizures quickly! One of the possible side effects is loss of peripheral vision, so please pray with us that Levi's vision is not compromised.  He has enough vision problems as it is!

While we were at Cardinal Glennon, we ran into one of the PICU nurses, Sarah.  This was just a God thing!  Sarah transferred to another hospital while Levi was still in the PICU, so she had no idea how well he was doing.  She happened to be there with her son, who is undergoing treatment for lymphoma (please pray for him!).  It was wonderful to see her and show her how far Levi has come since his days in the PICU.  Sarah saw him at his sickest, and she was just amazed at how big he is and how healthy he looks!  We are SO glad we ran into her!

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