A mother’s love: caring for a child with a seizure disorder

Over the past 20 years, actor Greg Grunberg has played many roles in some of the most popular TV series and movies. Offscreen however, the role which is closest to his heart is being a father, caregiver and advocate for his oldest son, Jake, who is living with epilepsy. 

To raise awareness about seizure disorders, Grunberg has used his celebrity status to become a voice for the epilepsy community. He believes strongly in giving back and empowering those who are living with epilepsy, from fighting the stigma surrounding seizures to supporting caregivers and building a network they can lean on.

In his efforts to outreach, he hosts an online series called “The Care Giver,” in which he explores the challenges that parents and caregivers like himself face in real life. He’s turned the camera on everyday heroes to spotlight their resilience, their determination and their triumphs to help their loved ones thrive.

Caring for a child living with a seizure disorder

In the series, Grunberg hits the road to catch up with families and amazing individuals living with seizure disorders. Among them, he meets Meghan on a pickleball court, where they discussed her role as caregiver to her 5-year-old daughter, Cammy. Since birth, she has lived with tuberous sclerosis complex (TSC), a rare genetic disease that causes non-cancerous tumors to grow in the brain and other areas of her body. At some time in their life, most people with TSC are affected by seizures, according to the National Institute of Neurological Disorders and Stroke.

When Cammy was about 7 weeks old, she started making punching motions with her arm and she would look off in the other direction for about 5 to 10 seconds. When it kept happening, Meghan shared a video of the behavior with Cammy’s pediatrician, who immediately scheduled an appointment with a neurologist. 

“I had never known anyone who’d had a seizure before, but Mike, my husband and Cammy’s father, recognized it,” said Meghan, in an appearance on “The Care Giver.” “It was horrible because the seizures started happening more frequently. When we saw the neurologist, he did a bunch of tests, including an EEG and MRI. A little after midnight, a doctor came in and told us that Cammy had TSC. Our whole lives flashed in front of our eyes. All I could think about was how different it was going to be.”

They met with a TSC specialist the next day, and Cammy was prescribed medicine to manage her seizures. The medication helped with her seizures for a while, but over time the seizures got progressively worse. They tried another medicine, but the seizures kept getting longer and more frequent until she was having a seizure every 10 minutes. 

“TSC has been described as a wave, and you never know when the next wave will hit,” said Meghan. “Nothing stopped the seizures. Every time she would have one, I felt worse and worse. Finding treatment was, sadly, a matter of trial and error.”

One day, Cammy’s seizures just stopped. That seemed exciting at first, but two months later Meghan got the feeling that something wasn’t right. Cammy looked uncomfortable and her personality seemed to have changed—she was almost vacant, explained Meghan. She was also regressing in her developmental skills. The family still had not seen any seizures, but an EEG would reveal that the seizures were back and as frequent as ever. They were desperate to get her some relief. 

They spoke with Cammy’s doctor about their options. She recommended Cammy undergo surgery and start EPIDIOLEX^® (cannabidiol) to reduce her seizures. EPIDIOLEX is the only FDA-approved CBD medication for seizures associated with TSC in patients who are 1 year of age and older. Her doctor also explained the possible risks and benefits of this treatment, including some potential side effects Cammy might have like an increase in liver enzymes, sleepiness, diarrhea or loss of appetite. “We really trust Cammy’s doctor, and if she thought something could help, we would give it a try,” said Meghan. (Results may vary. Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX^®. Please see additional Important Safety Information below.)

Soon after the surgery and the medication switch, Cammy was experiencing fewer seizures. “She seemed less tired and her personality was peeking through again,” said Meghan, who beams as a proud mother. “A light was back in her eyes that hadn’t been there in months. We did experience some breakthrough seizures, but we worked with her doctor to adjust her dosing based on her weight. But, for us, this is where things really began to change for the better.”

Cammy started gaining some movement in her left hand and went from laying down to sitting up by herself. It took some time, but very slowly she was crawling and then she walked on her knees. On Valentine's Day, Cammy was in the kitchen and she stood up and took a few steps, which was incredible for the family. While Cammy still experiences some seizure activity, the family works with Cammy’s doctor to manage it through adjustments to her medication.

Now, Cammy is an active 5-year-old who loves playing with her siblings and always gives them hugs when they're feeling down. When they need cheering up, she’s the one who clowns around with them. “I share my story because I want to show the world that this cute little kid with an even cuter personality has TSC, but is doing well,” said Meghan. “I want people to know that things can turn out OK and I want to offer caregivers the same inspiration and hope they offered me. When I see Cammy playing with her brother and sister, I am grateful for where we are. Cammy’s going to be the best Cammy she can be, and she’s proving that to us every single day.”

To watch more inspiring stories where Grunberg meets other caregivers and loved ones living with epilepsy, visit “The Care Giver” series. In each episode, he discusses their journeys to diagnosis, the important role of caregivers and the impact of treatment with EPIDIOLEX.

*Greg Grunberg is a paid spokesperson for Jazz Pharmaceuticals.

*Meghan is a paid EPIDIOLEX Ambassador.

Important Safety Information & Indications

What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)?

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. 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 side 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 1-800-520-5568.

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