If you want to know what a caregiver does, the answer is in the name. The people in this role — including parents of children with rare forms of epilepsy — care fiercely and give constantly to ensure their children have the best lives possible. Unless you’ve been there, it’s hard to understand the stress, exhaustion, but also the joy that comes with it.
Actor Greg Grunberg knows this well, and in a new online series, “The Care Giver,” he’s giving back to parents like him. Known for his work on popular TV shows and movies, Greg has been outspoken about his own son’s journey living with epilepsy. Now, he’s on a mission to take care of fellow caregivers — celebrating their accomplishments, engaging them in meaningful conversation, and giving them a special day. It can be hard for caregivers to find time for themselves, but Greg helps them take time to recharge and reflect on their journey. Through personal connection, love, and lots of laughs, Greg highlights both the inspiring and difficult moments that come with caring for a loved one with epilepsy.
A Moment of Me-Time
Jon is a car buff, so when Greg brings this caregiver to a garage full of vintage cars, a smile crosses his face that only gets wider when they get into a car and start revving the engine. Greg shares with Jon his love for trucks and talks about how he shares that hobby with his family.
“Do you feel that?” Greg says, as they sit down to have a chat inside the garage. “It’s called me-time.”
Jon’s 17-year-old son Cameron was diagnosed with Lennox-Gastaut syndrome (LGS), a rare form of epilepsy characterized by multiple types of seizures that begin early in life. Jon didn’t know anything about epilepsy until his son started experiencing seizures and had to learn about the condition in real-time. The same was true for Greg and his son.
Jon was desperate to find a treatment that worked for his son. They tried special diets and different medicines, but nothing seemed to work. He was exhausted all the time and still having dozens of seizures a day. When Jon read cannabidiol was reported to help people with certain types of epilepsies, he told Cameron’s doctor he had briefly considered growing it himself, just for the possibility to get his son some relief.
Instead, his son’s doctor was able to get Cameron in a clinical trial for a plant-based, highly-purified form of cannabidiol (CBD) medicine that showed promise for reducing seizure frequency in certain conditions. This medicine, EPIDIOLEX® (cannabidiol), was approved in 2018 by the U.S. Food and Drug Administration (FDA), making it the first and only prescription CBD medicine approved for the treatment of seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC) in patients 1 year of age and older.
Jon told Greg that when Cameron first started on EPIDIOLEX, their healthcare team discussed possible side effects with them. In the first few weeks, Cameron was lethargic, and his liver enzymes went up because of interactions with another medicine. They worked with their care team and were able to quickly resolve these challenges.
Taking one of the convertibles out for a spin, Jon and Greg discuss dad-to-dad how life has changed after Cameron started EPIDIOLEX. Because Cameron is having fewer seizures, he’s more attentive and is better able to retain things he’s learned. “We’re able to worry less,” Jon shares with Greg. “It’s improved not only for Cameron, but for all of us.”
IMPORTANT SAFETY INFORMATION
Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment.
Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information.
Please see additional Important Safety Information & Indications below.
The Healing Power of Art
In another segment of “The Care Giver” we meet Leslie, whose daughter Kelley had her first seizure when she was only 4 weeks old. At two months, Kelley was diagnosed with tuberous sclerosis complex (TSC), a rare, multi-symptom condition that can cause tumors to grow in the brain and other vital organs such as the kidneys, heart, eyes, lungs, and skin. For Kelley, the condition causes cluster seizures — or multiple seizures over a short time. For Leslie, Kelley was her first child, so she became a caregiver and a parent at the same time.
When Greg comes to meet Leslie, she reveals that like many caregivers, she’s a “do-er” – someone who’s always giving to others, but never herself. To give Leslie an opportunity to put herself first, Greg surprises her with a trip to an art studio, where they meet with an art therapist and spend the day talking about their caregiving experiences while creating art.
Leslie found EPIDIOLEX when Kelley was continuing to have seizures, despite a cocktail of medicines. After starting on EPIDIOLEX, Leslie shared that she knew EPIDIOLEX was helping the first time her daughter was able to get through the night without having a seizure. Since starting EPIDIOLEX, Kelley has fewer seizures which helps her better connect with people – and the world gets to see more of what Leslie’s vibrant daughter has to offer.
As with Jon, Greg and Leslie also discussed important information that her healthcare team brought up when Kelley started taking EPIDIOLEX, including some potential side effects Kelley might have like increase in liver enzymes, sleepiness, diarrhea, or loss of appetite.
At one point in the art studio, Leslie makes a comment about her “imperfect” art, which Greg reminds her is a great metaphor for caregiving: like in art, caregiving has no handbook, and at the end of the day, it’s about figuring out what works for you. They laughed, knowing that even though their paintings might not sell, they will remain priceless to both Greg and Leslie, as they are a reminder of their time together.
A Garden of Hope
Walking through a beautiful botanical garden, Greg shows his next caregiver, Gloria, her surprise — a tea party set up for just the two of them. One of Gloria’s dreams is to travel to Europe, but being a caregiver to her daughter, Grace, can make traveling hard.
Grace had her first seizure when she was 4 months old. Terrified, Gloria and her husband rushed their daughter to the hospital, only to be sent home after being told Grace probably wouldn’t have another seizure again. Two months later, she did. Grace was then diagnosed with a rare form of epilepsy called Dravet syndrome and, at one point, was having over 400 seizures a day.
“Everything I learned about being a mother, I had to throw out the window,” Gloria shares with Greg.
To take care of herself, Gloria started a garden at her home. “Gardening brings me peace and helps me to relax,” she says. “I feel like if I can bring life into this world and preserve it and keep it beautiful… maybe if I can do that for a plant, I can do that for Gracie.”
Gloria said Grace did not experience common side effects on EPIDIOLEX, such as sleepiness, diarrhea, and raised liver enzymes, although she has her levels monitored regularly. She knew EPIDIOLEX was helping for Grace after a string of beautiful firsts: The first time she didn’t have a seizure out of excitement when her dad got home from work. The first time she was able to kick a soccer ball across the room. The first time they were able to have a conversation… Grace’s way. Grace still has limited speech, but, with reduced seizures, is able to find ways to communicate and connect with her family.
At the end of their day together, Greg takes Gloria back home where her family is planting flowers. She shares that while she can’t predict Grace’s future, she’s going to continue to do everything she can to help her family flourish.
“I have to take care of myself in order to do that for them,” she tells Greg. “That really means a lot, and Greg… you’ve helped me realize that.”
To watch these inspiring stories and learn more about their journeys to diagnosis, the challenges and joys of being a caregiver, and impact of treatment with EPIDIOLEX, visit TheCareGiverSeries.com
*Greg Grunberg is a paid spokesperson for Jazz Pharmaceuticals.
*Jon, Leslie, and Gloria are paid EPIDIOLEX Ambassadors.
Important Safety Information & Indications
What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)?
EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. In some cases, EPIDIOLEX treatment may need to be stopped. Call your doctor right away if you start to have any of these signs and symptoms of liver problems during treatment with EPIDIOLEX:
- loss of appetite, nausea, vomiting
- fever, feeling unwell, unusual tiredness
- yellowing of the skin or the whites of the eyes (jaundice)
- itching
- unusual darkening of the urine
- right upper stomach area pain or discomfort
EPIDIOLEX may cause you to feel sleepy, which may get better over time. Other medicines (e.g., clobazam) or alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how EPIDIOLEX affects you.
Like other antiepileptic drugs, EPIDIOLEX may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call a healthcare provider right away if you have any signs of depression or anxiety, thoughts about suicide or self-harm, feelings of agitation or restlessness, aggression, irritability, or other unusual changes in behavior or mood, especially if they are new, worse, or worry you.
Take EPIDIOLEX exactly as your healthcare provider tells you. Do not stop taking EPIDIOLEX without first talking to your healthcare provider. Stopping a seizure medicine suddenly can cause serious problems.
What Else Should I Know When Taking EPIDIOLEX?
The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections.
EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX 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, herbal supplements, and cannabis-based products.
What Additional Information Applies to Women?
If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant.
If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy.
Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX.
What is EPIDIOLEX (cannabidiol)?
EPIDIOLEX is a prescription medicine that is used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex in patients 1 year of age and older.
It is not known if EPIDIOLEX is safe and effective in children under 1 year of age.
Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information.
You are encouraged to report sihttps://www.epidiolex.com/IFUde effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You may also contact Jazz Pharmaceuticals at 1-833-424-6724.