Jordan was born November 2, 2007. He was a beautiful and very healthy baby. At 4 months old he started having what we thought were muscle type spasms in his right arm. Something in my gut told me that it wasn’t right. I rushed him down to the ER three times insisting they refer us to a neurologist to check him out. Finally at the third ER visit they sent a referral. April 28, 2008 Jordan had a full tonic clonic (grand mal) seizure lasting one hour and 25 minutes. They pumped his poor little body with EVERY drug imaginable and it did nothing. I sat next to him holding his hand and my heart broke that day. I couldn’t help my son. I remember that day like it was yesterday. Total chaos and panic in the emergency room. Jordan was 5 mos old. He was in ICU for nine days following and they did EVERY test you can think of and everything came back normal except for his EEG that showed that he did actually have a seizure.
After we were discharged the neurologist explained to me that it “probably” was a febrile seizure and he was not going to put him on meds just yet. A week went by and Jordan had another full tonic/clonic seizure lasting 45 minutes. Back in the ICU we went. Because of all the meds they had given him his respiratory system shut down forcing the doctors to incubate him (again).
Jordan started having seizures just about every other day (t/c seizures) if not every couple of days. They did not know what was causing his seizures. When Jordan was in the ICU again when he was 8mos old, my mother had asked his neurologist about this syndrome she had read about online…. Dravet syndrome. I remember clear as day the neurologist saying “no way, his symptoms are not that of dravets”. My mom forced the issue and he reluctantly agreed to start genetic testing. Two weeks went by and I got a phone call. He called me to tell me Jordan tested positive for SCNA1 gene. I didn’t understand what that meant. He said it was the horrific syndrome my mother had suggested to him.
Over the past year… Jordan has had 28 tonic clonic seizures that have gone into status. He has had 5 absent (drop seizures). He has been on 5 different medications. Jordan developmental status right now is on track. He’s almost two and is a very tough kid. We are 5 weeks seizure free today!
I think it’s INCREDIBLY important to get awareness out there because I believe in my heart, we wouldn’t have found our diagnosis if my mother didn’t spend hours researching epilepsy in babies. We would be at idiopathic epilepsy still to this day and can only imagine how bad off he would be if he didn’t get off the medications that contraindicated his syndrome.
Thank you for building a site that can be passed on to get the information out there!!! Its sooooo important.