Caeden's doctors said not to panic when he had his first seizure at only 9 months old. It's not uncommon for young children to have a seizure and usually it doesn't indicate a serious health problem. But they raised the red flag when he had several more.
Genetic testing at his local hospital revealed that Caeden had a rare and severe form of epilepsy known as Dravet syndrome. His parents Jennifer and Mike got the news while Caeden was in the ICU after a particularly severe seizure.
The couple learned that children with Dravet syndrome can experience frequent, intense seizures. Some have trouble walking or speaking, and may not reach developmental milestones at the same rate as their peers.
"Reading about the condition and how it could affect our son really scared us," Jennifer says. "But a medical student reminded us that Caeden is unique and that his story hadn't been written yet. That helped us focus on the present rather than fixating on the ‘what ifs' and unknowns."
Building a custom treatment plan for Dravet syndrome
Jennifer learned that Children's Health was home to a leading Dravet syndrome expert, Deepa Sirsi, M.D., Pediatric Neurologist, Medical Director, Comprehensive Level IV Epilepsy Center at Children's Health and Associate Professor at UT Southwestern Medical Center.
She was reassured to learn — at Caeden's very first visit — that Dr. Sirsi wasn't just a highly regarded physician. She was also a mom who Jennifer knew from their community.
"It turned out that Dr. Sirsi's daughter was in swimming lessons with my oldest son and I'd been chatting with her for weeks at the pool," Jennifer says. "It was such a small world moment and it made me feel this instant connection with Dr. Sirsi and Children's Health."
Dr. Sirsi adjusted Caeden's medications to a regiment that's most effective in children with Dravet. She also connected Caeden with physical therapists, speech therapists, and other specialists at Children's Health who could help him thrive.
Two children with a rare condition
Dravet syndrome is incredibly rare, affecting fewer than one in every 20,000 children. It happens because of a change in a gene called SCN1A. Sometimes kids inherit that gene from their parents. Other times, the change happens randomly as a child is developing in the womb. Both of Caedan's parents took a test to find out if they carried the gene for Dravet. Neither of them did.
When they welcomed their third son, Breccan, into the world, the odds were in their favor — it was extremely unlikely that they'd have another child with Dravet. But around 3 months old, Breccan had a seizure.
"I called Dr. Sirsi and we did the test for Dravet right away," Jennifer says. "We were devastated when it came back positive."
On the upside, they knew exactly what was causing Breccan's seizures and could start epilepsy treatment tailored to Dravet syndrome immediately.
"That was really helpful because Dr. Sirsi had a plan and we could start treatment quickly," Jennifer says. "We were able to start Breccan's other therapies really early too, which has led to a better outlook."
A caring community for Caeden and Breccan
Now, Caeden is 16 and Breccan is 8. Jennifer describes Caeden as the most loving and outgoing kid you'll ever meet. He loves Chuck E. Cheese and anywhere that has characters in costumes. Breccan is more of a rascal. He loves running around, kicking a ball and having as much fun as possible.
Dravet syndrome affects their lives in many ways. Both boys experience speech delays, cognitive delays and difficulty sleeping. Caeden wears a brace on his leg to help him walk. Both boys continue to see Dr. Sirsi for ongoing care and monitoring, and also receives physical, occupational and speech therapy at Children's Health.
"Having everything at Children's makes it so much easier to get all of the services they need," Jennifer says. "I can easily see all of their appointments online, and all of their doctors have access to all of their records. We've even been able to do some visits virtually which is so helpful since they have so many appointments."
Having two children with complex medical needs isn't easy, but Jennifer's family takes it in stride. She says it's helped her and her husband learn to live in the moment and appreciate the small things in life. For her oldest son, Emmett, who does not have Dravet syndrome, she says it's helped him grow into a kind and thoughtful young adult.
"For years, we've had a routine when someone has a seizure: one parent gets the oxygen, the other gets the medication bag and Emmett is on 9-1-1 duty. He explains what's going on and opens the door for the EMTs," Jennifer says. "Uncontrolled seizures are just part of life with Dravet. But it has really made us look at life differently and not sweat the small stuff. We live for the fun everyday moments like swimming, playing basketball or going to the park."
Their family is also involved in their local chapter of the Dravet Syndrome Foundation, where they connect with other families and fundraise for new research and cures. This foundation has played a key role in funding research into innovative new treatments like gene therapy. Jennifer's advice to any families impacted by Dravet syndrome is to find an expert care team and seek out places to connect with others experiencing similar circumstances.
"Know that you're not alone and there's hope," Jennifer says.
Children's Health is home to a team of pediatric specialists with deep expertise in even the most complex forms of epilepsy. Learn more about our leading-edge Pediatric Epilepsy Center offering care in Dallas, Plano and Prosper.
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