After a few more episodes of the Infantile Spasms, the neurologist went ahead and ordered a new medication called vigabatrin. It just recently was approved for use in the U.S. and because of potential serious side effects on vision, it is very tightly controlled. So, we had to fill out paperwork and order it. It will be mailed to us. The issue with it is that it is common to cause peripheral blindness. So, Waverly will have regular check ups with the eye doctor to monitor that. However, even if that were to occur, it's better than battling the IS continually and the effects that they would have on her.
In the meantime, she is starting back on prednisone to try to keep the IS under control until we can get her started on the vigabatrin. We hope to get it by early next week, and then we'll wean her off the prednisone.
She ended up having a bout of IS last night at 11:30 (she woke up from sleeping to have them...), then again this morning. She had a 17 minute episode at lunch time that was really hard on her, and then slept the rest of the day until dinner. So far this evening she's been awake and happy with no seizures, so we pray that that will be the case through bedtime and overnight.
I think of you all and pray for you often. I can't even imagine the range of emotions that you deal with every day. You have no idea what an inspiration you are to others. I'm so thankful that the Lord has given you guidance and a hopeful outlook in the midst of such difficulty. I hope you find some peace at the thought that this life is such a fleeting moment and one day sweet Waverly (and the rest of us) will be free of all pain and able to rejoice together. Until then, I will continue to pray for her health and your strength.
ReplyDeleteAsking for a restful night for you and your sweet baby.
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