A little over a week after Alice was born, I noticed she was cross-eyed, stiff, arching significantly, and opening her mouth in an odd way. It lasted about 4 minutes and then just stopped as if nothing happened. I immediately went to Google and started typing in symptoms. I came across the word seizure. I ran and told my husband, “I think Alice just had a seizure.” We took her to the emergency room, were told it was likely acid reflux, and were sent home. Another week passed, and she did the same thing. This time I took a video and showed our pediatrician. He put her on reflux meds, and we were sent home once again. About four days later, it happened again, so I went back to the pediatrician (apologizing for my frequent visits), and he decided to refer us to a pediatric neurologist.
Once there, she reviewed the videos I had taken and wanted to have an EEG done on Alice in about a week. A week later, we did a one-hour EEG. We were sent home to wait for the results. About an hour later, after JUST getting all the “gunk” out of her hair, Alice had a big episode – I thought it was for sure a seizure lasting over 7 minutes, so I called 911. We took our first ambulance ride and were admitted overnight. There they told us the one-hour EEG from earlier had come back normal. So, they did a 24-hour EEG, MRI, and lots of blood work. While hooked up to the EEG, she had an episode, but the EEG returned normal. The MRI was normal. Her blood work showed an elevated liver level but nothing too concerning. We were told she had Complex Partial Seizures and were put on Keppra and told to follow up in 4 weeks.
4 weeks later – our neurologist offered to do genetic testing. This would give us a good idea about what is going on with Alice’s brain or even what is yet to come. About a week later, we received the genetic testing kit and sent it in. 14 days after that, we got an answer that perfectly described what Alice was going through. She has an ultra-rare neurological disorder, ATP1A3 – Alternating Hemiplegia of Childhood (AHC). She described what she knew about the disorder and advised us to reach out to support groups and social media. We were told she is one in a million, and there is just not a lot we can do now, but we can spread awareness and hope for a cure.
Alice is more than her diagnosis; she is very sweet and a happy/calm baby overall. She loves her older sister, Amelia, and enjoys lying on the floor watching the chaos that her sister makes around her. Amelia cannot get enough of Alice and loves holding and cuddling her. We cannot wait to see these two girls grow up together.
Life after being diagnosed has been very dark. We have mourned the loss of not only the future we had planned as a family but the future that we thought Alice was going to have. We are trying to take the time to understand this awful disease and learn how to be the most supportive parents possible.
If you would like to join Alice’s Army, please donate here.
No one goes unnoticed. We love you, and we see you.
The Silver Family.