Alison Springer
We never really knew what absence seizures were, however, Alison began having episodes where she would not be able to respond to us or she would have times where you would say something to her and we thought that she was thinking of other things or not paying attention to us, but it turns out she was having these absence seizures all along. The best way to describe an absence seizure is that you watch a TV show and you fast forward 20 seconds every few minutes. You would lose things in the show. You wouldn’t lose the entire show, but you lose bits and pieces of the show, and you may miss the most important part. That’s exactly what absence seizures are like, you miss parts of the day, parts of a conversation, parts of a show, parts of a song, etc. Imagine having this happen to you 100+ times a day. That’s what Alison’s days is like. She misses a lot of times that she can’t account for.
We first learned of the absence seizures when one of our family friends said that she had this same thing growing up and it was a form of a seizure called absence seizures. So, we scheduled an appointment with the pediatrician, and we were referred up to Children’s Hospital in Columbus in June 2017. She had an EEG and was immediately diagnosed with absence seizures and immediately started on Keppra (which is one of the most common epilepsy medications) and we were instructed to see how she does with that. Alison didn’t do well on the Keppra having many side effects from it and she was then switched to a different medication. We followed up at Nationwide Children’s for a year with the absence seizures continuing to increase and the medications not helping with them at all.
We then switched to Cincinnati Children’s on 05/16/2018 where we saw two separate physicians, again changing medications multiple times, with multiple side effects and increasing seizures.
On 11/04/19 Alison had her first grand mal seizure. She had a great night, just went into her room to read a book for school and we heard something fall. Her brother checked on her in her room and saw that she was having a seizure on the ground. Her second grand mal seizure was on 2/10/20 when she got up to get ready for school and got into the shower and fell out of the shower with a grand mal seizure. Since that time, she has had numerous other grand mal seizures.
In August 2020 we had requested to obtain a second opinion from Cleveland Clinic, and we transferred care up to that facility. The doctors were initially hopeful that they may be able to do a resection surgery to help with the seizures, as the testing and the seizure activity of her turning her head to the right meant that the seizure activity in the brain was on the left side. We had a panel of 25 doctors reviewing her case with her physician and discussing options. We proceeded to continue to do testing, however, one night when we were out to dinner with friends, Alison had a seizure in the restaurant (this was the first time it had happened not at home) and her head turned to the left, which meant that seizure activity that night was to the right. Therefore, after this seizure with activity on the right, the panel of doctor’s immediately determined that it is not the right time to consider a surgical resection, because of the activity is on both sides, the surgery would not benefit her. And as our doctor explained, we get one shot at doing this surgery, so everything has to align perfectly as we are looking at doing surgery on a very sensitive area that also controls her speech, etc.
At this point, we continue to use different medications to help at least limit her seizures. They are not controlled, and the absence seizures still occur frequently daily. This affects every aspect of her daily living, everything from schoolwork from missing what teachers are saying on what they are teaching in class, to things at home like just taking showers or walking out to our car after eating at a restaurant because if she is having an absence seizure she would walk right in front of a car and have no idea she is doing this. She does have a fulltime aide with her at school to assist in her school day. At this time we have two rescue medications, one for a grand mal that lasts over 5 minutes and one for the absences if she has a cluster of them together that last more than 15 minutes.
Alison’s passion is dancing. Dancing/music has always been an outlet for her. She loves dancing and we are so thankful to have found such a wonderful dance family in Charmion Performing Arts Center. Heidi and her whole staff and the dancers at the studio are so great with Alison. Sometimes Alison is not able to complete her dances, but she continues to move and may do the smaller movements, but even with having the absences seizures, when she comes out of the seizure, she gets right back into the dance and will continue with the dance without stopping. I have sat in the audience at dance competitions and heard other parents that don’t know Alison make comments that she forgot her dance, but little do they realize, that EVERYTIME she gets out on stage and completes a dance, what an accomplishment that is. The fact that she doesn’t get upset that she messed up a move or had an absence seizure on stage and missed a section of the dance, the fact that she continues to complete her dance and her excitement for completing the dance is all that we need. She is definitely one strong girl.
At this time, we continue to take things one day at a time. Some days are better than others, but we have learned to just be thankful for what we have and that things could always be worse. We pray that a new medication will become available, or the right combination of medications will be found to help her, or a new treatment will become available for help her have better control of the seizures.