Parenting Kids with KCNA2 is a Life-Long Journey
How to Care for Yourself from a KCNA2 Mom
by Nancy Musarra Phd
Nancy and her daughter Giana
Some parents say they “just knew’ something was not quite right with their child, but did not know what. Other parents noticed that their child was not developing like others when they did not walk or talk when expected. Still other parents had no doubt that something was wrong, when their child turned blue because of a cluster of seizures that required immediate medical care.
Regardless, none of these parents expected their child to be diagnosed with a rare seizure disorder like KCNA2. Almost all of us were surprised when we began this long journey. We found ourselves frantically having to learn about KCNA2, a genetic mutation that most doctors know little about.
Parents of children with KCNA2 are often their child’s source of strength. Trial and error teach us how to evaluate the effectiveness of medications, identify how much sleep our child needs and to figure out what triggers cause our child additional stress, seizures and regression. We remain strong for our child (diagnosed with KCNA2) while supporting our other children.
Life is different. This journey is not temporary. It’s not like a headache that will find relief with two Tylenol or stitches that will heal in a few weeks. Instead, it’s a permanent change of life as we know it.
For now, there is no quick fix or cure.
Rather, it’s a marathon.
Here are 15 ways to care for yourself from a KCNA2 mom.
1. Accept that anxiety is a part of the package. Since the diagnosis of KCNA2 is fairly new, many neurologists, therapists and primary care physicians are unfamiliar with this rare epilepsy. Parents often find themselves in the role of teacher, having to provide information about KCNA2 to doctors, therapists and teachers.
Even when they find a professional who is familiar with KCNA2, there are many unanswered questions about the symptoms, prognosis and treatment. With this uncertainty comes anxiety and fear about developmental delays and seizure control to name two. Anxiety can cause inner turmoil for parents resulting in feeling nauseous and changes in sleep or eating patterns. Since there are no easy answers to the challenges of KCNA2, feeling anxious is inevitable.
MY THOUGHTS: Pace yourself. Deal with challenges as they come. You will feel worried, scared and annoyed when questions go unanswered. Continue to move forward. Anxiety does not have to take away your strength.
2. Control anticipatory anxiety or it will control you. Anticipatory anxiety is different. Anticipatory anxiety is when you worry about things that have not happened yet, but may have happened to others diagnosed with KCNA2. Still, this type of anxiety can be exhausting because, each child is different and so is their response to KCNA2. Try to stop negative thoughts that lead you to worry about the future. Since it is impossible to predict the future or control the unknown, try to spend your energy on what you can control.
MY THOUGHTS: Control anticipatory anxiety by learning how to interrupt, stop and replace these thoughts. As soon as negative thinking starts, interrupt yourself. Clap your hands, snap your fingers, stand up, move or snap a rubber band on your wrist. Do whatever it takes. Replace negative thoughts with encouraging and productive thoughts. This new habit will help you control anticipatory anxiety and stop it from controlling you.
3. Staying organized will give you control. Stay organized. KCNA2 involves many aspects of your child’s life. From medication schedules, doctor appointments, therapy visits, caregivers and many specialists you may encounter, find an organization method that works for you. This will help you keep track of your child’s care and progress.
MY THOUGHTS: Looking back, I remember when my daughter was four years old thinking that one day, I would not have to organize her medications, hospitalizations, therapy appointments and academic/work schedules. That was over 20 years ago. As I write this, I still organize each day. Finding a method that works is key to how you will manage your child’s care and the progress they will make.
4. Accept that you are supposed to take care of yourself. Many parents struggle to keep up with work schedules and the daily schedules of their children. Having a child diagnosed with KCNA2 can add to the already task filled day that can include homework, school events, music lessons, sport events and doctor and dentist appointments. Parents of “typical” children cannot even imagine adding the extra layer of KCNA2 to their schedule.
What is the extra layer? For KCNA2 parents, it can include multiple therapy visits, appointments with specialists, tube feedings, daily medications and hospitalizations that can last from days to weeks. It's no surprise that KCNA2 parents can feel tired, run down and rarely find time for themselves. Still, it is essential to schedule (for yourself) and follow-up with annual doctor appointments and screenings for breast/colon/skin cancers, blood pressure, diabetes and cholesterol.
MY THOUGHTS: Yes, it’s easier said than done, but it's essential for parents to take care of themselves. Taking care of yourself and following through with preventive health appointments can prevent your immune system from becoming weak, causing serious health consequences. KCNA2 parents need energy to think on their feet and spontaneously handle the next unexpected situation. Accept that you deserve to stay as healthy as possible.
5. Self-care is a list. Do the list. There are many ways you can stay strong and keep your mind and body healthy. Make a list of what self-care activities you enjoy doing (or used to do) and begin working them into your schedule: exercise, stretch, hydrate, sleep, eat healthy and practice deep breathing exercises to relax your body and your mind. Give your mind (and eyes) a break from reading and researching on the computer.
MY THOUGHTS: DO what is on your list. Commit to yourself. Begin with activities that do not require extra time such as hydrating, eating vegetables, stretching and deep breathing. Work your schedule around when your child is in the care of others (if possible). You can use this time to relax or exercise.
For example, when my daughter is attending physical, occupational or speech therapy, I use this time to exercise. I plan ahead, bring running clothes and while she is in session, run three or four miles outside of the hospital or facility. This allows me to stay strong, relieve stress and re-energize for the next day. Start with small steps toward your self-care goals. Be consistent and build from there.
6. Have fun without guilt. Taking time-out to relax, re-energize and connect with friends is difficult when your child is struggling. For parents caring for children with KCNA2, weeks or even months may go by with poor seizure control, making it impossible for parents to find time for themselves to regroup and relax. However, when your child IS stable, allow yourself time to decompress by spending time with family and friends, away from child care responsibilities. Time away will help you cope, relax, re-energize, connect with friends, relieve depression and strengthen important relationships.
MY THOUGHTS: Give yourself permission to take a break. Enjoy time with friends and family without feeling guilt. This may be the most difficult part of your journey, knowing how much your child struggles. Stay mindful of how important having fun and taking a break is to your physical and emotional health.
7. Remember that you and your spouse (or parenting partner) are on the same side of the table. Raising children can be stressful for any parent. However, raising a child with the extra layer of needs, related to medications or developmental challenges can cause even more stress for parents. The key is learning how to work together. When couples do this, they can actually become closer as a couple and learn to support and appreciate each other. However, when partners do not work as a team, the relationship can shatter.
MY THOUGHTS: Begin by acknowledging that many of the challenges of KCNA2 do not have answers or clear-cut solutions. Position yourself to work together. Sit on the same side of the table with your partner and put the KCNA2 challenge on the other side. Communicate as a team. Focus on listening to understand. Share your fears and ideas. Together you can approach the next challenge and celebrate your child’s success.
8. Stop blaming yourself for not preventing this situation. Many parents of children with KCNA2 have asked themselves if they are responsible for their child’s diagnosis. Blaming often begins with “What if?” • “What if something I did while pregnant caused KCNA2? Or, • “What if I could have prevented this? These questions are unproductive and waste mental energy.
MY THOUGHTS: Self-blame will only exhaust your body and mind. Focus on what you can do and steps you can take to move forward.
9. Stop blaming yourself for not being able to fix or cure your child. Regardless of how many therapists, doctors and researchers you talk with about KCNA2, you will not be able to fix or cure this rare condition. Answers are not yet available. Accept that unanswered questions and challenges may continue and will always be a part of your child’s life. Blaming yourself or constantly feeling defeated is wasted energy.
MY THOUGHTS: Finding answers, relief and a cure for your child is something the KCNA2 Epilepsy Global Connection is all about. Join and participate in our groups. Ask questions and share your ideas with other KCNA2 families. Spend your mental energy communicating with your doctors. The more they learn about KCNA2, the more they can help your child. Encourage local doctors to participate in the KCNA2 Natural History Study and future research.
10. Accept your emotional reactions, thoughts and frustrations. As you watch your child accomplish goals, while overcoming significant challenges of KCNA2, you may experience many emotions such as joy, anger and frustration. Thoughts and emotions may flood your mind as you watch your child struggle with tasks that may seem automatic to most children their age. Feeling unsettled is a part of this journey.
MY THOUGHTS: Allow yourself to experience emotions as they come, both pleasant and unpleasant. Expressing how you feel is not a sign of weakness. It’s a way to cope.
11. Know your people and connect with them often. People will surprise you. Some family and friends will support, listen and want to understand the stress you experience related to the diagnosis of KCNA2. Others will disappear. They may not answer calls, or invite you to the same playgroups or parties you have attended in the past.
Excluding you and your child may not be a sign of poor character, instead, they may be uncomfortable with the special needs of your child. Once they become more familiar and comfortable, they may reconnect with you and your child. Unfortunately, not everyone will.
MY THOUGHTS: Give friends and family a chance to understand KCNA2. Help them get to know your child so they see beyond the diagnosis. For those who continue to exclude you or your child, let them go. Don’t waste time or energy on those who may never understand. Gravitate toward those who want to be in your circle.
12. Know when to push back and when to back down. Sometimes people may shock you by the rude and nasty things they DO or SAY about you or your child. Negative behaviors may be passive and subtle while others may be overt and obvious. Either way, your child may feel bullied, sad and excluded. Fortunately, many of these situations will provide opportunities for others to learn about and gain an understanding of our children.
MY THOUGHTS: Over time, you will become confident about how to respond to the negative and rejecting comments or behaviors of others. Express your thoughts. Set healthy boundaries. Sometimes, saying nothing at all is effective. Silence can be heard loud and clear. Have faith that in time, you will learn when to push back and when to back down.
13. Celebrate each step forward as you teach others how to be inclusive. Every skill your child develops is a step forward. Others will celebrate with you as they watch your child learn and feel pride about their accomplishments at school, social groups, church, sports and family events. Those who want to be inclusive will follow your lead and include your child.
MY THOUGHTS: Celebrate big and small victories. Every step is a step forward. If your child needs accommodations for sensory issues, seizure control or physical limitations, others will follow your lead and they too will encourage your child to participate and be involved, regardless of their challenges.
14. Focus on the CAN DO’s. Parents worry when their child’s development falls behind their peers due to KCNA2. Regardless of whether your child has a gain, loss or gain/loss mix of potassium channel function, learning age-expected skills may be delayed. Parents are often concerned about the skills their child cannot do. However, over-focusing on what your child cannot do can be a non-productive.
MY THOUGHTS: Focus on what your child CAN DO. This will allow you to use your mental energy productively and decrease anticipatory anxiety. Anticipatory anxiety tends to increase when we focus on things we cannot control. Remind yourself that the skills your child cannot do “now” are skills they cannot do “yet”.
15. Listen to the wisdom of other parents and caregivers who have been in your shoes for a while. They get it. There are many parents who have been on this journey for a while who understand the challenges, stress and triumphs of KCNA2. Reach out to other parents. Connect with parents who are also focused on solutions for their child and how to best manage the stress of parenting a child with special needs.
MY THOUGHTS: You are not alone. Actively seek out others and learn from their wisdom. Take care of yourself on this unexpected journey.
Become a part of the KCNA2 family by joining the KCNA2 Private Family Facebook Group for families with a confirmed diagnosis.
Together, we can support our children and talk through the many unknowns that accompany the unfamiliar medical and emotional challenges of KCNA2. We understand this marathon and the importance of staying strong and healthy. To learn more about KCNA2 go to our website at www.kcna2epilepsy.org.
If you have a child diagnosed with another KCNA gene, including KCNA2, please join the KCNA Gene Support Facebook Group.
**This article was adapted from the article: Parenting Kids with Special Needs is a Marathon, Here’s How to Care for Yourself from a Mom Who Knows, published by Musarra, N., (2021)
Nancy Musarra (KCNA2 Mom of a 24-year-old)
Founder of KCNA2 Epilepsy, Inc