Our son Logan was born in July 2005 and was diagnosed with Dravet syndrome in April 2009. We always knew that there was something “different” about Logan; that he had something more than “just” epilepsy.
Logan had his first seizure when he was 15 months old. It was the beginning of a long nightmare for us. His seizure lasted about 40 minutes. He was released from the hospital a few hours later, with the doctors telling us it was just a febrile seizure.
24 hours later I was calling 911 again as Logan went into another seizure. This one only lasted 2 or 3 minutes, but we still had an ambulance come and this time the hospital kept him for 3 days for a MRI, EEG, and blood work. They also started him on anti-seizure medications right away (to this day, he’s on his 8th or 9th I believe).
We also noticed that Logan wasn’t hitting all of his milestones. From a physical standpoint, we felt Logan was ahead of the game, running and climbing at every chance he got. But we noticed that he was delayed in his speech and learning. He also started to show some behavioural challenges. We also noticed that he showed some ADHD-like and autistic-like traits and has now also been diagnosed with ADHD and he also is on the spectrum with PDDNOS
In January of 2009 he decided to test for Dravet syndrome. We were called into the neurologist’s office to be given the news that Logan has Dravet syndrome. They gave us some information… i.e., that it’s a gene mutation, therefore, he won’t outgrow this; some kids have issues with their gait (walking); very hard to control the seizures with medications; all people with Dravet have developmental delays ranging from moderate to severe, etc…
We were DEVASTATED. I slipped into a massive depression for several months (although, really, I believe I was already depressed from when this all began in November 2006 when Logan had his first seizure); this diagnosis of Dravet syndrome just pushed me further.
However, today, with hard work, self-awareness, and counseling we are all doing a little better. We try to look for the positive things in life and we have lowered our expectations of our children and of ourselves, as people, as husband and wife, and as parents. Acceptance and grieving for the child you thought you had but will never have is an ongoing process, I think. I don’t think we’ll ever be OKAY with this. But we are learning to accept it and move on and adapt our life to what is. Sometimes we have setbacks, but most of the time we do okay; and sometimes we even do great!
Today Logan is having very few seizures because when he was diagnosed with Dravet Syndrome, we weaned him off of Lamotrigine, which has been found to be an aggravator for most kids with Dravet. He is not totally seizure free, he probably won’t ever be, and any day he could begin to have several seizures a week again like he did before. But for now, we take it for what it is.
I wish all the families out there dealing with this condition (or any other disability) nothing but strength and love. Take care of yourselves everyone.