Colson had Hundreds of Seizures a Day Until His Surgery at RCH
Colson started having seizures just days after he turned 6 months old, and we spent a week in 2 previous hospitals before coming to RCH where they had a diagnosis for us within 12 hours… Focal Epilepsy and Focal Cortical Dysplasia(located in the Left Occipital Lobe).
We were heartbroken, we didn’t know what this meant or where we would go from here, but our team at RCH answered each question and guided us every step of the way and they still are to this day.
Colson began having hundreds of seizures a day, we tried countless medications to try control the seizures but they didn’t work and we knew he would have to have brain surgery at some point if we couldn’t control them, it was our last option.
We had a good few months with no seizures, then at the end of January 2022 they returned, back to the hundreds a day and taking a toll on his quality of life. Even though he seemed like such a happy bubbly baby he was very miserable, but he still powered through. We knew a surgery date was approaching, it was just a matter of when it would happen – next week, next month.
His surgery was a Corticectomy, Crainiotomy and insertion of intracranial Electrodes, and an Intraoperative Electrocorticography
They had to remove the Dysplasia which was located in His left occipital lobe- the part that controls your eyes/eyesight. So they had to remove part of his occipital lobe, which would in turn affect his eye sight but only very slightly.
His surgery happened on the 5th of April, he underwent hours and hours on the table. His surgery went unbelievably well, they didn’t have to remove as much as they thought and he is recovering so so so well. He is still having some seizures every few days but no where near as many as he was.
RCH has gone above and beyond for us every single time we have been there, we can’t thank them enough. We are forever in debt to them.