Meet the Tuholskys
An Inspiring Family’s Story of Managing Their Son’s Epilepsy
SK Life Science, Inc. is an innovative global pharmaceutical company focused on developing treatments for central nervous system disorders. Learn about the Tuholsky family’s journey with their son Kyle’s epilepsy and message to the epilepsy community on remaining positive and advocating for better seizure control.
This post is part of the Epilepsy Blog Relay™. Follow along all month!
This blog post was submitted by SK Life Science, Inc., the lead sponsor of the Living Well With Epilepsy blog.
Why is Kyle Moving His Eyes Like That?
Joanie and Kent Tuholsky were getting ready for their daughter’s fifth birthday party when they noticed their one-year-old son Kyle was sitting in his highchair with his eyelids fluttering. Something was wrong. They immediately rushed to the emergency room.
After several days in two different hospitals, doctors diagnosed Kyle with infantile spasms, a type of seizure that occurs in babies and often hinders brain development. The Tuholskys were heartbroken, and unsure of what life would look like moving forward.
Eventually, the intensity of Kyle’s seizures began progressing, to the point where he was experiencing multiple severe episodes a day. On top of the constant attention Kyle needed, Joanie and Kent still had two young daughters to care for, and it was hard to maintain a sense of normalcy.
“The circumstances were anything but ordinary. It’s hard for people to understand what life is like. It’s not just the seizures. It’s that you can’t trust the absence of seizures because your timing is unpredictable. You can never relax.” – Kent Tuholsky
Growing Up With Kyle
Despite his epilepsy, Kyle in many ways was just like any ordinary kid. He was rambunctious, full of energy, and loved to run and climb. But “Where is Kyle?” became the Tuholskys’ mantra. They all needed to know the answer to that question at any given moment to keep him safe – and for their own sanity.
Kyle’s parents and sisters have always been his best friends, primary caregivers, and biggest advocates. Being non-verbal, Kyle communicates with his body and eyes, so everyone in the family learned his language and how to interact with him. “Get down Kyle” were his little sister’s first words.
Joanie and Kent vowed to always put their children first, never favor one over the other, and do their best to keep things positive. They made sure to balance life out with joy no matter what was happening with Kyle’s care. His sisters remember going to museums and parks during his hospital stays. They also remember how they enjoyed simply hanging out in his room and doing everything as a family, while learning how to make the best of any situation.
Life After Treatment
Finding the proper treatment for Kyle took the Tuholskys to California, Texas, and finally Atlanta where they met the neurologist who introduced them to the medication XCOPRI® (cenobamate tablets) CV when Kyle was 18. XCOPRI® is indicated for adults with partial onset seizures.
Since starting treatment with XCOPRI®, the frequency of Kyle’s seizures has been significantly reduced. Kyle even began playing baseball for the Miracle League last year.
“There’s a level of peace in the house that we haven’t felt as a family in a really long time.” – Jenna Tuholsky
The Tuholskys are extremely grateful for the direction that Kyle’s journey has taken and the path they’ve been on together. He’s taught them how to be resilient, how to remain positive despite their adversities, and how to never give up advocating for the ones you love.
Learn more about the Tuholsky family’s story and Kyle’s experience with XCOPRI® here.
Everyone’s epilepsy is unique, and treatments work differently from person to person. Like Kyle and other XCOPRI® patients, SK life science encourages people with epilepsy and their caregivers to advocate for themselves and never settle for a treatment regimen that isn’t helping them reach their goals.
If you have partial onset seizures, know you are not alone in your fight toward zero seizures. Speak with your healthcare professional to learn if XCOPRI® is the right treatment for you.
For more information about XCOPRI®, please visit https://www.xcopri.com/.
INDICATION AND IMPORTANT SAFETY INFORMATION FOR XCOPRI® (cenobamate tablets) CV
XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age.
Please see additional patient information in the Medication Guide. This information does not take the place of talking with your healthcare provider about your condition or your treatment.
DO NOT TAKE XCOPRI IF YOU:
- Are allergic to cenobamate or any of the other ingredients in XCOPRI.
- Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart.
XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:
Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.
QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting.
Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood.
Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.
Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.
Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus).
XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
PREGNANCY AND LACTATION:
XCOPRI may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use.
Talk to your health care provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org.
Talk to your health care provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI.
COMMON SIDE EFFECTS:
The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired.
These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at http://www.fda.gov/medwatch.
XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law.
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.