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I Go With My Gut To Care for My Child With Severe Epilepsy

Jolene Vanuto’s son has Dravet syndrome, which is a severe form of epilepsy. Watch how she manages his schedule to avoid seizure triggers, and find out her lifesaving advice about calling 911.

Transcript

00:00:00:01 - 00:00:41:22
Jolene
As a caregiver, it's important to always follow your gut instinct. If you feel something’s wrong, tell the doctor, and if the doctor doesn't do anything about it, find another doctor, and find somebody who will listen to you. Saber has Dravet Syndrome, which is a rare genetic epilepsy. Also, he is autistic. In order to get more control over seizures, I have to make sure that he takes his medication on time, that I take him to his appointments, that I get his EEGs regularly, and that I avoid all the seizure triggers, like avoiding things that make him excited, avoid any kind of temperature changes.

00:00:41:22 - 00:01:04:02
Jolene
For example, with my son, I have to stop giving him baths because every time he would get out of the bath, he would seize because of the temperature change, but I wipe him down with baby wipes and that's how we get baths. Once in a while I will give him a bath, but it's rare, and I know it sounds horrible, but you got to do what's best for your child.

00:01:04:19 - 00:01:35:01
Jolene
Now he can walk, but I put him in a wheelchair sometimes because when he starts running or playing or getting hot or spinning, this triggers seizures. Although sometimes I take him to Chuck E. Cheese, even though the excitement makes him have seizures, I feel that it's important to let him be a kid too. I have to call 911 six or seven times a year.

00:01:35:01 - 00:01:56:17
Jolene
As long as I'm avoiding his seizure triggers, then right now it's a lot less than it was when he was first diagnosed with epilepsy. If you have to call 911, you need to be prepared. You have to know what seizure first aid is and know how to give the rescue medicine. My son had a seizure. He vomited and there was throw-up all over him, and he went unresponsive.

00:01:56:17 - 00:02:21:18
Jolene
I called 911. They tell me, "Lay him flat and start CPR." As a nurse I knew he would aspirate. Just because 911 tells you to do something, you have to do what is right by your child. If you have to take your child to the hospital, grab the medicines because you don't know if they'll be in stock because it's so rare. You need to have a list of your child's medication.

00:02:21:18 - 00:02:47:14
Jolene
Know what times that they take the medication. You need a list of what doctors the child has, and especially you need the neurologist’s phone number and address. Practical things that I do while I care for my son: I drink a hot cup of coffee. I get up early and just sit outside. I read a book. I watch TV.

00:02:47:14 - 00:03:06:00
Jolene
At least once a month, I go with my sister shopping, and if I'm really stressed out and I have a really, really bad day, I just take a long, long, hot shower. My name is Jolene Venuto. I'm a mom and a nurse. My son has severe epilepsy called Dravet, and I am a member of MyEpilepsyTeam.

Jolene Vanuto is a dedicated nurse who has spent her career caring for others. When her son, Saber, was born with Dravet syndrome — a severe and rare form of epilepsy — she found herself using her nursing skills in a whole new way. She became not just a mom but also her son’s most important caregiver.

Dravet syndrome often begins in infancy and can cause frequent, sometimes prolonged seizures. Because the condition is rare, it can take time for families to learn how best to manage it. In Jolene’s case, her medical training helped her immediately understand what Saber needed. She knew that included closely monitoring him for any signs that a seizure might be coming on, sticking to a daily routine, and taking steps to avoid potential seizure triggers.

Triggers vary from person to person, but they may include factors such as bright lights, temperature changes, or overexcitement.

Timing and Teamwork

Jolene’s routine involves giving Saber his medication at the right times each day. She also observes his behavior and records any patterns she notices, such as when seizures happen and how long they last. This helps her and Saber’s doctors decide whether to make changes in his care. Jolene has learned that teamwork is vital, so she stays in close contact with his medical team, including neurologists and other specialists, who guide her on which treatments and strategies can help minimize Saber’s seizures.

Dravet syndrome can lead to unexpected emergencies, so Jolene emphasizes the importance of being prepared to call 911. Seizures lasting longer than five minutes or causing breathing difficulties can become life-threatening if not addressed promptly. In these moments, Jolene relies on both her nursing experience and her instincts as a mother to stay calm.

Jolene emphasizes that it’s always better to be cautious and call for help if you’re worried. She also reminds people to keep important details such as medication lists, doctors’ phone numbers, and any special instructions easily accessible. That way, emergency responders have all the information they need right away.

A Balance of Joy and Safety

Balancing Saber’s safety with everyday life can be challenging, but Jolene tries to keep his routine as normal as possible. For example, simple family activities allow Saber to enjoy the world around him without feeling isolated. Even small outings can feel risky, but Jolene believes that making memories and experiencing life are just as important as being cautious.

Jolene’s main message to other parents and caregivers is to trust themselves and speak up for what their child needs. She knows it can be scary to navigate a serious condition like Dravet syndrome, but she encourages people to ask questions, seek help, and never hesitate to call 911 in a true emergency. Jolene’s journey shows how a combination of professional knowledge, maternal intuition, and unwavering love can allow a child with severe epilepsy to live as fully and safely as possible.