What really is Dravet Syndrome? Dravet Syndrome is a rare and catastrophic form of epilepsy for which there is currently no cure.
To my family, it’s a silent monster that came into my house, sneaking up on my daughter Maggie at the age of five months. It not only took my daughter; it took the whole family, our hearts, our life as we know it within weeks of diagnosis.
During the first three years of Maggie’s life she lived in complete darkness. We had to board up windows, turn off lights and cover the TV screen with a sheet because any little bit of light would trigger her seizures. In order to go to the bathroom or cook or do the simplest household task, we had to light a candle and make sure Maggie was nowhere near that little light. In order to go to her doctor’s visits or the emergency room we had to cover her with a sheet to transport her to the van that was already covered with sheets around the windows.
If it rained and only one drop landed on any part of her exposed skin, uncontrollable seizures would ensue, sometimes for long periods of time. Giving her a bath was a challenge because the exposure to water would inevitably set off more seizures. It took two of us to bathe her and we did not do it often. We nearly lost her twice to status seizures and are extremely grateful she pulled through.
The tiniest glimpse of any sort of patterns will send Maggie into Grand Mal seizures. Heat is an issue as well because if her body temperature goes over 97.8 she will start to seize. Just when we think we have figured out how to manage one type of seizure, Dravet strikes again, changing the rules on us with no warning at all.
So life now revolves around Maggie. We try to live our lives one day at a time hoping, praying and begging God for a cure. This unforgiving syndrome is not satisfied and has now gone deep into our personal lives. It split our family into pieces, forcing choices that are really not a choices at all. It has forced me to move to another state with Maggie in order to find better resources for her leaving my husband behind in order to keep his job and still provide for us.
We don’t go anywhere which might have seizure triggers, and by now we suspect that nearly anything can be a trigger. There is hardly ever a date night or a stroll in the park; life as we know it is forever changed … we are prisoners of Dravet!
Yet we love our daughter so much that we will do anything we can to keep her safe, even if it means severe sacrifice. You may be asking yourself if we have tried conventional medication. Well let me tell you, we’ve tried them all.
Since she was 18 months old we have injected ACTH steroid shots into each leg twice a day. She has taken oral Ativan and Depokote. These medications are just a few examples of the many we have tried throughout the years that have only made her worse. No pharmaceutical medicines have worked so far.
Every day we experience a range of emotions including depression. We cry, we hurt and subsequently it has led to an isolated lonely life. We have hope and we still pray for a miracle. We believe our prayers may have been answered. When we started using Charlotte’s Web cannabis hemp oil, Maggie’s seizures began to decrease almost immediately. Within two to three days you could actually see her and witness for yourself how the swelling had gone down. Her speech skills increased from pointing to things she wanted to actually saying 6 to 9 word sentences.
A desperate mother has to do what she needs to do in order to save her child’s life. We didn’t have the luxury of time to wait for everyone to decide the best medication for her. We see her pain, we feel her pain and we knew we had to take action quickly. That is when I drove myself to Colorado and picked up hemp oil, which is legal now here in Illinois. While it has been the most helpful treatment yet, it has worked only to a degree because it needs the entire plant containing the critical component THC in order to get Maggie’s seizures completely under control.
She still seizes today but not as badly as before. The most obvious improvement that we have seen since she started using the oil is her cognitive improvement. Dravet is not an easy life; it is no life at all. What you have just read here is a tiny glimpse of what Dravet really looks like. In reality it is extremely unpredictable and will change when we least expect. We often wonder…is this the seizure that will take her away from us!