The last seizure Robbie had on February 2 was a scary time for all of us, as he had been two years seizure-free and we thought he was ready to come off the medication.
It was a big set back and he had to go right back on the medication. Since then he has gotten back into a new normal with the meds again and he recently had an in-home EEG to see exactly what was going on.
Today we received the results of the EEG and it was a tough one for us to swallow. Unfortunately, Robbie is having nocturnal seizures. During the study, he had about 4 of them. Thankfully they are not lasting long, but he is having multiple ones at night. We had a feeling this was happening, but we just weren’t ready to hear it. His neurologist will be doubling his medication in hopes to slow down and stop the seizures.
We are very sad to hear the news that our little fighter is indeed having seizures and multiple ones a night.
We are also staying positive that the medicine increase will help stop them and he can once again push through this like he always does.
He will have a repeat EEG in a couple months to evaluate the meds and see if they are helping.
He is such a strong little boy and we are so so proud of him. He keeps us strong that’s for sure.
When we explained it all to him, he told us that it’s ok for more medicine if it will take the booboos away from his brain. He is our superhero and will keep on fighting every day.
We are thankful for the support system we have to help us through the difficult times and celebrate the joyous times! We will keep fighting and we ask that you keep fighting with him! 💜