I had a two-year-old little boy when my daughter was born and I was excited to have a girl. But just days after she was born, I noticed that something was different. She did not act like other babies. Instead, she seemed to be at one extreme or the other.
She either slept all day or not at all. Her body was either floppy and lifeless, or stiff to the point it was difficult to bend her arms or legs. When I held her, she was calm and motionless, or just the opposite where her body would shake and spasm so much, it felt like she could jump out of my arms. I soon became aware that this combination of symptoms is common for babies who eventually experience seizures. I was familiar with the words “seizure” and “epilepsy”, but not until meeting my daughter, did I develop a real understanding of what is like for someone who has seizures.
Before she was a year old, many seizure types developed. Her first tonic clonic seizure occurred when she was seven-months-old. (Tonic clonic seizures were formally known as grand mal seizures). By eight-months, she had up to 22 tonic-clonic seizures a day. She also had “absence” seizures or staring spells that could last between 15 and 30 seconds and occur in clusters. This seizure type does not look as violent as a tonic-clonic, but can be equally as damaging and dangerous, especially when they occur in clusters, causing status epilepticus.
For the next ten or more years, chronic and uncontrolled seizures resulted in frequent hospitalization stays, neurological testing, spinal taps, blood levels, muscle biopsies and new combinations of medications. Each new cocktail of medication seemed to control seizures for a while until a breakthrough seizure occurred. With each breakthrough seizure, the process would start all over again. Our hope was seizure control.
Although medications help to partially control seizures, there can be several unintended side effects. Fatigue, irritability, stress, developmental delays, speech difficulties and feeling sick are common. Some symptoms are a result of the brain recovering from seizure activity (post ictal) while others are caused by the side effects of medications.
It’s impossible to tell the difference.
Not until she was 19-years-old did she receive a diagnosis of KCNA2 Epileptic Encephalopathy. KCNA2 is a rare type of epilepsy caused by a variation in the KCNA2 gene, causing the potassium channel to function improperly. One of the cardinal characteristics of this rare epilepsy is that seizures are difficult to control and multiple medications are usually necessary.
Here are 10 teachable moments that were truly valuable along the way:
- Others may avoid you and your child because they are afraid of seizures, not because they are uncaring.
Watching someone have a seizure is frightening,
regardless of whether it is the first or tenth time you see or hear it. You can decrease fear and increase confidence of those close to your child (brothers, sisters, cousins and close friends) by talking about seizures, medications and “what to do and what not to do” if a seizure occurs around them.
- It’s not necessary to explain your child to onlookers.
Ignore and turn away from random strangers who may point, stare or even glare. Instead, focus your energy on your child and ensure their comfort and safety in the environment, especially out in public where they may experience new places and new social situations. Stopping to explain your child’s challenges to every “random stranger” is not necessary.
- Let your child’s potential, passions and goals define them, not epilepsy.
There were many times when my daughter’s life seemed defined by seizures. For years, we were constantly at the emergency room, doctor appointments, therapies, pharmacies and weeks of hospital stays. I learned to not allow the diagnosis or illness define who she is. Instead, I learned to listen to her ideas, interests, passions and goals. She continues to surprise me with interests I could have never guessed she had. In our case, she decided she wanted to become a dog trainer long before we even had a dog. Eventually, she achieved her goal. By believing in her abilities and not allowing her diagnosis to take center stage, she continues to follow her passions to the best of her potential.
- Connecting with parents who understand and “get it” will prevent you from feeling alone on a deserted island.
Parents with healthy children may not have a clue how to care for and raise a child who experiences seizures, or who has any type of significant disability. Developmental delays, weeks at the hospital, multiple medications and seizures are unimaginable events for some parents. Don’t go it alone. Reach out and connect with others who understand.
If you have a rare condition, put the effort in to find others. Although we did not have a diagnosis for 19 years, once we did, I initiated a non-profit group called KCNA2 Epilepsy, Inc. and so far, have connected 65 families from around the globe.
- Sleep is medicine for a brain that experiences seizures.
Sleep is important. If your child seems to need more sleep, let them. Sleep allows the brain to rest and recover, allowing for better overall functioning. There will be days where allowing your child to sleep in or for most of the day is a good thing. Sleep may be just what their brain needs to heal.
- Don’t waste mental energy worrying about a future you can’t control.
Worrying about the future or ruminating on “What if” questions are a waste of mental energy and can only leave you exhausted. Replace worry and unanswerable questions with a focus on what you can do and control today. Learning this skill will help you focus in a positive and productive direction.
- Accept that there may not be answers.
It’s exhausting to search for treatment options and answers to why your child may be delayed or experiencing symptoms you do not understand. Don’t give up the search. BUT, learn to accept that there may not be answers to your questions. It is possible that the professionals working with you may not understand a child’s symptoms. Accept that some questions may have to go unanswered (today).
- Create, provide and seek out every possible learning environment for your child.
It’s exhausting to think about all the things your child cannot do (yet). And, many environments are packed with over stimulation that your child just cannot handle. You will know it when you see It, and will learn to adjust. Don’t give up. Your child will provide many teachable moments for you to learn and understand what environment and activity is best for them. Seek out the most appropriate learning environments such as play groups, school activities, libraries, parks, pools and playgrounds. Even if you only find one activity that promotes your child’s ability to learn and be included, it’s worth it.
- Be honest with how you feel.
You can’t be a super-parent 24 hours a day. Allow yourself to feel jealousy, anger, pity, frustration and depression in small amounts when necessary. Express and communicate honestly about how you feel to those around you who want to understand. This is an effective way to manage stress.
- Be kind to yourself.
It’s easy to focus on the many tasks that are left to do or the tasks you have failed to do. Be kind to yourself and proud of what you have managed to get done. Take advantage of the days your child is well enough to play and communicate. Choose to play and enjoy your beautiful child. One mistake I never made was to choose “play”. When there is a choice between cleaning up the kitchen or playing with a child, I choose to play every time.
Gain support and share your teachable moments
As parents experience the challenges of caring for and raising a child who experiences seizures, they learn a lot, and often need support. If you are someone with similar experiences who has learned along the way, contact Dr. Musarra and share your experiences.Together, you can compile a list, expanding on the valuable lessons learned along the way.
If you would like support as you manage the challenges of caring for a child with epilepsy, consult with Dr. Musarra through email, nancy@drnancymusarra.com, or call 216-954-5665.
