It’s hard to describe the feeling that you get when you are told your child is having seizures. It’s a myriad of feelings that you are left to sort through while you try and take in the new medical terms and medications.
I remember everything about that moment and how scary it was.
Despite the fact that my son sustained a brain injury while in the NICU, no one, that we can remember, mentioned that Sawyer would be more prone to seizures. To be honest, even if they did, we wouldn’t have guessed that he was having seizures.
We believe that if it weren’t for a routine phone screening with the neurology nurse, Sawyer may have not been diagnosed until it was too late.
We will forever be thankful for the nurse who set up the EEG “just in case” due to the description I gave her of some things Sawyer was doing.
I admittedly told several people that I didn’t believe he was having seizures and that they were just being cautious.
I went in with the feeling we would sit for two hours and go home. I was wrong. After forty minutes the nurse came in and stopped the test. She said that the doctor had ended the test and wanted to meet with me.
At that point I got worried, but was hopeful it was protocol. When we were put in a room the doctor explained that Sawyer had 11 seizures that were caught in that 40 minutes and that they were extremely concerned.
They said that they suspected infantile spasms and they are treated as an emergency. We were immediately sent to the hospital down the road and admitted. At that point I had called my family and husband to work out childcare for Sawyer’s twin sister Quinn and began to worry.
We were admitted to the hospital and immediately put on a strong dose of IV seizure medication
I still didn’t know what I was looking for and felt confused that my son could be having seizures. The nurses often times had a hard time determining if Sawyer was having a seizure without checking the monitors.
They were such subtle movements, which felt frustrating. We were taught to watch his eyes and try to determine if his movements were voluntary or not.
After 60 hours we left the hospital with strict instructions to document each seizure and report back. It was heart wrenching to watch not knowing if it was affecting my son negatively or not.
Fast forward a year and a half later and thankfully Sawyer’s seizures are mostly under control. Sometimes he has break through seizures when he is sick, but they are well managed at home.
About 1,200 children each year in the U.S are diagnosed with Infantile Spasms.
They are extremely rare and can be devastating if not caught early enough. This particular type of seizure is very hard for parents to recognize. It can be something often look like reflux or a normal startle and when it isn’t diagnosed early it can cause developmental delays.
We don’t know if the seizures or brain injury caused Sawyer’s delays. We won’t ever know for sure. He was having these episodes for 3 months before we got him in and we don’t know the effects on his brain.
The one thing that we can do now is continue to raise awareness for Infantile Spasms.
You’ll never regret asking to speak with a neurologist or getting an EEG.