Braxton Jacob Ried was born on January 29, 2008 in Charlotte, NC at 2:50 pm. It seemed as though Ben and I had been waiting forever to meet our little guy! So healthy, so handsome and so alert…..He got all 10’s for his apgar scores, we thought, “Oh, already so smart!”. We could not have been happier!
At 7 months old (Sept 2008), I got a call from his daycare manager telling me that Braxton was having a seizure and was on his way to the hospital.
Upon arrival at the hospital we were told that our son was on a ventilator because he could not breath on his own. They had to give him an enormous amount of medication to stop him from seizing. Once he was stabilized, we were airlifted to Levine’s Children Hospital in Charlotte. Here, Braxton had an MRI, CAT Scan, Spinal Tap, an EEG and tons of blood work…all were perfect. We were released after 2 days only to go back to the ER the next day because he was not acting “right”. Once in the ER, Braxton had another seizure in my arms. The doctors rushed in and loaded him with medication AGAIN, which slowed down his breathing too much and as a result, he was intubated and back on a ventilator for the second time in 3 days. After an entire week in ICU we were told he had complex febrile seizures and he would probably outgrow them. The doctors did place him on Phenobarbital to help control any future seizures.
Nov 1st, 2008 after a fun night of trick or treating, Braxton had another seizure at 2:00 am. We were heartbroken. Yet again, we were on our way to Levine’s Children Hospital in the ambulance. This time the seizure only lasted 15 minutes and was controlled at home with Diastat (medication they gave us to use at home for any seizure activity). After 2 days in the hospital we were once again told…complex febrile seizures with the possibility of Epilepsy.
Braxton did well for a good while (16 weeks) so we decided to discontinue the anti seizure medication thinking we were “out of the woods”. Not long after, Braxton had ANOTHER seizure, we administered a dose of Diastat but he continued to seize so we did it again. It was fifteen minutes before the ambulance arrived and his activity started to slow down. Once we arrived in the ER at Levine, Braxton started seizing again. This time, we saw 4 different types of seizures and I have never been more scared in my life. We just wanted the doctor’s to make it STOP! Our little baby seized that night from 8 pm – 2 am, it was horrible.
It took 4 different types of medication to put an end to the “cycle” of seizures and ultimately putting him into a medication-induced coma.
Once again we were marched upstairs to the Pediatric ICU where the doctors noticed that the right side of his body was not responding to stimulation…we were later told that it was due to Todd’s paralysis which is sometimes brought on by prolonged seizure activity. Luckily, movement did come back within a few hours. At 4 a.m. we had a CAT Scan, to make sure there was no bleeding around his brain, which came back normal! The next day, an EEG was performed and showed spikes, which meant we got our first abnormal test.
The doctors told us that our sweet Braxton had Epilepsy. One week later, our pediatric neurologist told us she thought our son fit the criteria for Dravet syndrome.
After 4 weeks of waiting for the results, our worst nightmare became reality, the results were positive.