Hey guys, today I wanted to dive a little bit deeper into what Dravet is. Dravet is not just seizures, it is considered a DEE (developmental and epileptic encephalopathy). A DEE is a type of epilepsy caused by a genetic mutation that causes not just seizures but developmental delays and sometimes loss of milestone skills. Most DEEs, Dravet being one of them, are drug resistant. Drug resistant means that while medication may HELP reduce the frequency or duration of seizures, complete seizure freedom is extremely unlikely. This also contributes to the increased risk of SUDEP (sudden unexplained death in epilepsy). Dravet has a 15-20% mortality rate, which is significantly higher than general childhood epilepsy.
So, let’s talk about it. A good chunk of kiddos with Dravet have some type of speech delay, learning disability, or are nonverbal. Dravet also often goes hand in hand with autism or autism like traits. Every seizure that happens puts kids at risk of regression. One of the harder parts for me to accept is Dravet can also affect motor skills. Most kids develop an abnormal gait in their walk, and some kiddos have low muscle tone. Medications can also increase irritability, heighten emotions and just have some pretty crappy side effects. A lot of you know when Nova’s Onfi levels were high she was getting angry and pulling her hair out in chunks- which is why we decided to protect her hair follicles by cutting it until she was doing better.
I’ve not talked about it with too many of you, but at Nova’s last neuro appointment she was diagnosed with a global developmental delay (a significant delay in two or more areas of development), and it was brought up to us that while her gait isn’t bad yet, she is starting to develop some abnormalities. Even though these are things we see every day, hearing a doctor point it out takes a stab at your mama heart just a little bit.
Sleep problems are another common thing with Dravet. We never really experienced this with Nova, but Denver has very very few times slept through the night in her life. Alot of medications will affect appetite, which can lead to weight loss and/or gastrointestinal issues. Some patients with Dravet require extra nutritional support-whether that’s with something like Pediasure (Nova was on this for a while) or a feeding tube.
Now, something that is SUCH A BIG DEAL with Dravet is illness. Lowered immune systems + cold and flu season = even MORE seizures. Illness is soooo much worse with Dravet. A cold that took you a week to get over could have the girls sick for months. And a simple cold for them can spiral into ear infections, pneumonia, etc. Things get ugly fast with Dravet. The more their bodies are working to fight illness, the less their bodies can fight off seizures. The combo can be brutal.
All of this to say, when I say Denver is 4 months “seizure-free” that does not mean we haven’t had to deal with any other struggles. Also “seizure-free” typically is just referring to tonic clonic seizures. Unfortunately, with Dravet there are so many different seizure types patients experience. The girls both deal with myoclonus and atonic/drop seizures every day. Here is an article on seizure types, most people are just familiar with tonic clonic: Types of Seizures and Their Symptoms. So much goes in to being a caregiver to a child with Dravet, it is truly 24/7 supervision 365 days a year. Things can change in a heartbeat.
Help us raise awareness for Dravet, the more awareness the closer we are to a cure.
Addi Epilepsymama
