Our youngest son, Eli, was born full term back in 2013. We left the hospital when he was two days old, and within hours of being home, we noticed something was alarmingly off. I called the hospital right away and from the way I was describing the situation they thought maybe it was acid reflux. I was told to, “Watch him and bring him back in if it continued.”
His first two episodes were mild, so it made sense. But, when the third one rolled around, it was obvious that something was very wrong. We rushed him to the hospital and from there his seizures got extremely worse and back to back. I had never witnessed a seizure before, so I was thinking I was about to lose my baby. He was stiff, not breathing, turning purple and his eyes rolled back into his head for what seemed like forever.
Eli was air lifted to a specialized hospital immediately and while in the NICU they ran test after test. Ultrasounds, CT scans, MRI’s, three spinal taps, EEG, EKG, and tons of bloodwork to test for anything from the common to extremely rare disorders. Everything came back normal, except for the EEG, which showed seizure activity starting in the frontal lobe and spreading throughout his entire brain. He was put on two seizure meds to control them and nine days later he was released.
The meds were working and when he was 3 ½ months old they started weaning him off. He was almost fully weaned from the last med when he had a horrible grand mal seizure. My baby was rushed to our local hospital and per instruction he was given a loading dose of one of his meds and they sent us home. He continued to have partial seizures 20 to 30 times A DAY…for about five days until they decided to put him in the PICU for more testing. He ended up back on the meds.
He was like a zombie, but they worked. When he was 1-year seizure free they weaned one med. When he was 2-years seizure free, they weaned the last med. He even went through a routine T&A surgery that resulted in him going in for emergency surgery and a blood transfusion after he started vomiting blood and had a 40% blood loss.
This boy is a FIGHTER.
All was well after that and he hit 3-years seizure free when he was 3 ½ years old. New Year’s Eve in 2016, he was down with a sickness, diarrhea and vomiting. His little body must have been worn down so much that out of nowhere he dropped and had a tonic seizure. An ambulance rushed us to the hospital for a CT scan because he hit the edge of the wall when he fell. He was okay, and we were able to leave, but another episode that evening lead to brief vision loss – something he has never experienced before and he was terrified.
We saw his Neuro again a month later for another EEG. It showed normal results and we decided to keep him off the meds unless his seizures kept returning.
That leads us to today: 2 years later and 2 years of being seizure FREE!
It is very nerve wracking if and when he will have another, but we have HOPE that he can live a happy, normal life as much as possible. If you didn’t know anything about him, you would never know all he has been through because he is your average 5-year-old rowdy boy. He amazes us every single day, and has brought our family closer that we ever imagined.
I didn’t know a thing about seizures until he came along, and I wished I had because they are far more common than I thought! To learn more about Eli, visit his page here.
