It has been awhile since our last update and with the recent events we wanted to make sure all of you knew what was going on with our little Grace.

We had weaned her off 1 of her 2 anti-seizure meds last November and it went extremely well. We decided to wait a couple of months and then began to wean her slowly off the last anti-seizure medication in late December of last year. By June she was down from 3.5ml 2x per day to 1.5ml 2x per day when we began to an increase in Grace acting out and subsequent “timeouts”. At the time we accounted this behavior to the fact that less meds in her system were allowing her to feel the full extent of emotions which she’s really never had the opportunity to feel before or after surgery. Prior to surgery these extreme emotions (happiness, stress, startling, anger) would typically result in a seizure and since the HH was removed and not acting as a catalyst for the gelastic seizures and subsequent partial complex seizures the anti-seizure meds have been helping Grace control her emotions and keep them within ‘normal’ range.

We chalked these new episodes to normal behavioral issues children go through growing up but that Grace never experienced because of all the past seizure activity.

In mid-July we completely eliminated the anti-seizure medication and things got completely out of control. Grace was having aggressive and violent outburst. She was constantly trying to strike anyone near her or throw items. Meal time was especially difficult. Once she finished her meal she would try to knock everything off the table to floor. These episodes would escalate to the point timeouts were no longer working and when Grace was sent to her room she’d do her best to completely destroy it by pulling out the drawers in the dresser, knocking things off the shelves, etc. About 1.5 weeks into this we called the neurologist and asked if this change in her personality could be the result of having withdrawals from the anti-seizure med. He said it wasn’t a withdrawal issue, but more likely sub-clinical seizures or behavioral issues. He agreed we should put her back on the med and see if things improved. Within 2 days things were dramatically better. Grace was still having these episodes, but they were much more controllable and no longer escalated beyond the point of return.

Grace started kindergarten on August 17th. The week leading up to the first day we had a meeting with her IEP team at the school and let them know about the aggression we were seeing in Grace. We wanted to make sure everyone was on the same page and we had a plan for addressing any issues that might happen while she was at school. Of course, everyone was hoping Grace wouldn’t show any of these behaviors at school, but the first day of school proved us all wrong. She had several of these episodes which involved hitting, aides and classmates. That night I talked with a past teacher of Grace’s who had observed her during the school day and had been on the receiving end of her attacks. The teacher told me what she witnessed was not behavioral issues and that Grace was not in control. She said it looked very familiar to epileptic episodes of rage she’s seen before. After talking with the teacher I immediately called the neurologist and told him what had happened. He said it definitely sounds like there could be seizure activity going on and told us to put her back to the full dosage of the anti-seizure medication and plan on coming down to Sacramento for a 3 day 24hr video EEG in attempt to verify what Grace is experiencing and to ensure the medications she’s taking are correct. The good news is the increase of meds has definitely helped. It hasn’t completely eliminated the episodes, but as Grace’s teachers have said it’s like night and day from the first day of school.

We have come to believe that these episodes are 20% behavioral and 80% some form of seizure or rage attack like she had prior to surgery. They come on, usually, w/o warning. This seems to leave her very confused, sad and crying. The house has been walking on eggshells not knowing when she will go off. This is definitely not our sweet little Grace and we’re very anxious to find out what is going on and how we can help her.

This has been a very hard update to write since our news is not good news. We knew there were no guarantees for a completely seizure free life after surgery, so we’re doing our best to take each day as it comes.

Please keep our Grace in your prayers and we will post another update when we have some more news.