By Jennifer Hudson Taylor
It's very different being the parents of a teen with epilepsy than of a younger child. When they are young, parents have more control. We establish their routines, give them their meds, protect their environment, choose activities that will be age appropriate and safe, keep them around responsible adults, and make medical decisions for them.
As our children grow into teens, it's our responsibility to teach them independence and to start taking on the role of caring for themselves, making good decisions and using logical judgment. This can be hard when they don't have any medical issues, but for a teen with epilepsy, diabetes, Autism, Asperger's Syndrome or some other condition, the boundary lines can blur. In our case, Celina has both Epilepsy and Asperger's Syndrome.
This is where we are right now, trying to find that balance--and the balance seems to slide down the scale at times, depending on the situation, her moods, her stress levels, and how her day is going. Routines are highly important to her.
Our daughter started having seizures again at age 14 after being seizure-free for 10 years. She didn't remember her infant/toddler seizures and so the whole situation was a new experience for her and scary since she would lose consciousness and couldn't remember having it.
During the first few months, she didn't want to be alone. She feared sleeping by herself in case she had a seizure in her sleep. She feared falling, hitting her head and waking up to injuries and pain. When she had her first seizure, one minute she was running on the track and the next she woke up in the hospital with all these wires, in pain from her injuries, sore all over her body, and a migraine that made her head feel like it was on fire. The short term memory issues and disorientation were a problem for the next three days.
How Epilepsy Has Changed Our Lives
- We moved to a one-level home so she wouldn't be risking going up and down stairs to her bedroom.
- We put a video monitor in her room so we could hear and see her at night.
- We no longer felt comfortable leaving her at home alone to run errands.
- She had to postpone Drivers Ed.
- She is an excellent swimmer and had planned to take lifeguard lessons. We put them on hold. She can only swim when we know her seizures are under control.
- She had limited activity and had to sit out at gym at times.
- They advised her to take showers instead of baths. This way if she had a seizure and fell, she would be less likely to drown.
- They advised her to never lock the door to her bedroom or bathroom.
- They advised her to take elevators when possible rather than stairs.
- She went on seizure meds and had to deal with side effects and adjustments.
- We met with her high school to set up a safety plan. This became a HUGE battle that caused all of us a lot of stress, including Celina. She felt like a burden to them, but was concerned enough to want an escort from one level to another and to unfamiliar places on campus for special events.
- We wrote letters to teachers, the school nurse, the principal, vice principal, her resource teacher, the superintendent, called IEP meetings, and kept fighting for her to have the resources she needs to feel safe in school.
- We called the Epilepsy Foundation. They referred us to the ECAC and they guided us on what actions to take with the school.
Changes in Family Interaction
- Celina is now responsible for taking the right meds on time. She has two weekly pill cases and we have taught her how to fill it up and how to keep up with her meds. If she goes anywhere for an extended period of time, she must take her meds with her. We worry she might forget and may try to remind her. So far, she's okay with it.
- We try to find that balance so we aren't bothering her or being overprotective, but if I haven't heard anything from her in a while, one of us might call out to her and ask if she's okay. Sometimes she's fine with it. Other times, she sighs and we get that tone that we are annoying her.
- The meds caused severe mood swings that made us unsure how to talk to her, when to approach her, if we could comfort her. There are times when hugs are okay and times when she just wants to be left alone.
- She is constantly asking what time it is, or checking the time on her phone, computer or tablet. She does this because she worries she will miss taking a dose. Unlike some teens, we don't have a problem with her not taking her meds as a serious issue. She fears having another seizure because she doesn't like how she feels afterwards--the memory loss, the groggy state, the fatigue, the painful migraines, and the days of recovery.
- As a parent, I'm not always sure about my boundaries. There are times when she doesn't want to be alone, but she doesn't want me talking either. We may work on separate projects or watch TV, while sitting next to each other.
- She likes going for walks, and this is when she will open up and talk.
- Every morning, she asks us how she looked while sleeping. She wants to know if she had any epileptic activity.
- It's hard for us to buy tickets to events or plan things ahead of time, because by the time that day rolls around, Celina may be having a migraine or not feeling like herself and she may not want to go. It has even made attending church activities hard to do, so we often have Bible studies at home.
- If Celina goes a few minutes past the time she usually eats, she gets a migraine and will be very moody. The moment she eats, she is fine. She now carries snacks with her at all times. Her blood sugar stays on the low side and we have a machine where we can monitor it. If it gets too low, it can trigger a seizure.
- Celina's seizures are triggered by hormone imbalance, thus the reason she was able to go for 10 years without seizures until the teen years hit. When she's having mood swings, we watch her more closely, even if it means dropping activities, projects, or attending other events.
- Other things that trigger seizures are lack of sleep and stress. Her pediatric neurologist wants us to try and manage this as much as possible. If homework becomes too much, we make her stop and email her teachers.
- Celina's meds seem to be working and it has been a little over three months since her last seizure. She shows less epileptic activity in her sleep. As each month passes by with no seizure, we feel more hopeful that her seizures are under control, and we can give her a little more independence.
Please share the purple ribbon on your blog, website, Facebook, Twitter, etc to raise awareness about Epilepsy. Visit www.epilepsyfoundation.org, www.epilepsyadvocate.com, and www.epilepsy.com for more information.
Do you know anyone who has epilepsy? Has it impacted your life?