Oh how I wished this day wasn’t going to come…
Our sweet Talynn had her first seizure yesterday morning. It was one of the scariest times of my life (the other was back in February when Talynn wasn’t breathing). We always knew Talynn was at risk of having seizures due to two abnormal EEGs, missing of her Corpus Callosum, and Bohring-Opitz Syndrome. We had just prayed that she wouldn’t have them. Well after the seizure yesterday, we were able to be seen by Neurology and they gave us the option of starting daily medication or waiting to see if she had another one. We decided to wait because seizure medicine is just something that is very serious with different side effects. We were prescribed emergency medicine incase she had another one and then we went home.
This morning, Talynn had seizure number 2 and will be starting medication tonight. It may take time before the medicine gets in her system so Neurology said to be prepared for other seizures while we wait to get Talynn worked up to her total daily dosage. These seizures do not hurt Talynn and after they are over she is back to her typical self (unlike Mommy, Daddy, and MiMi). We just have to lay her on her side and make sure they don’t last longer than 5 minutes. They are very hard to watch especially when all you can do is let it run its course. We continue to ask for prayers for Talynn and that this medicine will work with very minimal/no l side effects.
For more information on Eplipsey:
Mommy of BOS ❤️