It was 3:40pm on Wednesday July 17, 2019 when I witnessed my son seizing. The world suddenly stopped, and everything around me froze in time.
My son’s diagnosis all started a few weeks ago when I brought my son to his pediatrician to discuss his muscle tone, specifically in his neck and legs. I noticed he wasn’t as strong as his twin sister, and was not able to meet certain milestones a typical 3 month baby should meet. The doctor implanted some gut-wrenching possibilities in my head and I left the doctors thinking that one day my son would have Cerebral Palsy. As a mother, you tend to think about the worst case scenarios, as hard as it may be, in order to think about how to overcome something so drastic. His pediatric doctor encouraged me to make an appointment with a neurologist at A.I. Dupont Hospital for Children’s, in order to get a better idea of what was going on. Of course, they could not meet with me until December 12th. There was no way I could make it that long without some type of answer.
A couple weeks after that appointment, I walked in his nursery and saw him stiff as a board, back arched, arms stiff in the air, and head rolled back with eyes wide open staring at me. He stayed like that for a few seconds as I stared at him wondering what the he** was going on with him. This was the first time I saw this episode and it was definitely quite alarming, to say the least. For the following days, I Googled every possible question related to Cerebral Palsy, seizure episodes, neurological disorders, etc. Every symptom listed on every article about CP related back to what my son was experiencing. I couldn’t take it anymore, I needed to find out what was going on. I called the hospital back and demanded that his appointment got pushed up. The earliest they could do for him was August 29th.
As the days went on, these episodes weren’t happening and I was starting to feel a little bit better thinking that it was really all in my head. I discussed my concerns with my OB who helps me with SO much, she really is a blessing in disguise. But on July 16, I noticed the episodes starting to happen again. I made an appointment for the next morning (July 17) with his pediatrician because at this point I was convinced my son was having seizures. Keep in mind my son was diagnosed with Reflux in May (this is important for later). Basically, she was concerned with his behaviors and didn’t want me to have to wait until August 29, so she called around for me to see if she could get anything sooner. She encouraged me to go straight to the ER if he had any episodes again.
It was 3:40pm on Wednesday July 17, 2019 when I witnessed my son seizing. The world suddenly stopped, and everything around me froze in time. His body stiffened like a flat board, his breathing stopped, and he lied on his play mat trembling. It was much worse this time around than the other times before. You could see the fear in his eyes, and vulnerability to whatever took over him. I let him finish his episode and then comforted him as he screamed in my arms and panted to catch his breath.
I lost it.
I tried to be strong, but in that moment, my world was flipped upside down. Why was this all happening to my little man? What was I going to do to get through this? So many thoughts and emotions all hit me at once, and I just cradled him in my arms, sobbing, rocking, and apologizing for everything he had been going through. We put him in the car seat once he was calmed down and went straight to the local hospital. Fortunately for us, the hospital is 2 blocks away, so calling an ambulance was pointless because we knew we could make it to the hospital faster. Once we got there, they took us right back.
Right after we paid our $75 copay, the doctor treating us basically told us that he didn’t think it was “that serious”. His bedside manner was not comforting, and I knew we were not at the right place. We left the hospital shortly after with no answered questions, and worry still in our hearts.
Once we got to A.I Dupont Hospital, we were seen right away and told that Gavin would be admitted for further evaluation. They wanted to give him a 24 hour EEG scan to evaluate his brain’s electrical activity.
They started the EEG the following morning (Thursday July 18) and from that point on, it was a waiting game. The doctors frequently came in and explained that it could be a few things, but since he did not have an episode while the EEG was monitoring him, they were certain it was not a seizure after all.
By the time the next morning rolled around (Friday July 19), Gavin clearly had enough of his makeshift helmet from the EEG electrode monitors, and was ready to be free from all monitors and chords that were hooked up to him. Although the EEG was supposed to be taken off at 8:30 am, it ended up not being taken off until around 3:00. So in total, he wore the helmet for almost 32 hours, rather than 24. I can’t explain how much I hated seeing him like that.
The doctors came in to speak with me one last time and to provide me with Gavin’s official diagnosis. Gavin has been diagnosed with GERD (Gastroesophageal Reflux Disease), Sandifer’s Syndrome, and Torticollis. If you read into these disorders, it’s basically when a child looks like they are having a seizure, and present all signs of having a seizure, but don’t actually have one. What causes the seizure-like behavior is the tightening of the neck and back muscles and added symptoms from having reflux. To hear the words that my son would outgrow this diagnosis eventually, and that it can be treated, was seriously a blessing from God. I just kept thinking about his future the entire time we were in the hospital. We are truly fortunate that we received the answers we were looking for. I am truly grateful for following my gut feeling and trusting that he needed to be seen. My little guy will have a little journey to “recovery” but with physical therapy, a helmet, and some medication, he should be good to go in a couple of years.
This whole experience could have looked a lot different if he truly did end up having a seizure. I wanted to share this story because sometimes social media can make it seem like life is perfect. People hide behind their technology and post perfect pictures of their lives, when everyone knows it is not reality. Yes, I post my life for the social world to see, but I want people to learn from my challenges and my stories. My advice to anyone with a young child facing these challenges, is to simply trust your gut. If you aren’t getting the answers you are looking for, save yourself some sanity and try looking for them elsewhere. I am not going to apologize for going to Google for help, because without it, I probably would have thought that my son was just being a typical baby who was doing weird things. I knew deep down something was wrong, and I wasn’t afraid to speak up to a doctor in a local hospital whom I felt was not understanding my concerns. Most importantly, I learned a lot about my strength as a mother and how to handle my emotions. I have cried over what could have been, prayed for what I wanted and counted my lucky stars for this somewhat positive outcome.
My little boy is now snuggled into bed, and as I placed him down tonight I thanked God for bringing this little boy into my life. I am so proud to be his mama, and although he just turned 4 months old, he has shown more strength to me in such a short period of time. Despite all his challenges since birth, he makes everything worth fighting for.