“Those are just normal newborn movements.” That’s what the pediatrician on weekend duty said when Dakotah was 2 months old and I took her on a Saturday. I knew it was something more so I took her back on Monday to see her regular pediatrician. While on the examination table, Dakotah started jerking her arms and leg (what I soon learned to be infantile spasms). It was like she knew she needed to do it so he could see. What followed was a series of appointments, EEGs, MRIs, and then brain surgery to drain 4 cysts. She was only 2 months old and the surgery did not stop the infantile spasms.
Dakotah was diagnosed with Aicardi Syndrome when she was 4 months old. It was then that I knew my daughter was destined for a lifetime of seizures. I hated this diagnosis. I hated every seizure that overtook my little baby girls body. I hated that my daughter was never going to have a typical life. But through all that hate, I loved her with all my heart and knew that I had to be strong for her. As a single mom, I knew I was the only one who was going to be there for her.
The first medication she was put on after her surgery shut her down. She stopped drinking from a bottle, her little smile was gone. They stopped that medication and started another. Fortunately, she regained her ability to take a bottle. Her hair was growing back and her little sweet smile had returned.
Because of the lack of brain development, I knew she was going to have developmental delays but I didn’t know that I was going to hurt so badly on a daily basis when my sweet girl would have in excess of 30 seizures a day.
A new medication was chosen. It was an injection that I had to give her. It wasn’t fun sticking in a needle in my baby every day. Then after being diagnosed with Aicardi Syndrome, the doctor realized that medication wasn’t going to work so it was all a waste of time. The doctor adjusted her medication again, looking for that “just right” combination that would decrease the number of seizures she was having. One medication caused her to break out in hives so badly that it was scary. So, on to the next medication and the next. Finally when she was about 6 years old, she was put on 2 different medications. Those actually seemed to work. She’s been on those 2 medications for the last 10 years now, with the addition of a 3rd about 3 years ago. I am grateful they are working and that she no longer has in excess of 10 seizures a day. However, she still has daily seizures. She still needs rescue medications. She still has to be taken to the emergency room when the rescue medication doesn’t work.
She knows her name and will give me a HUGE smile when I give her a kiss. This makes my heart so happy but it also makes me wonder what she would be able to do and understand if her body wasn’t filled with prescription medications. If she were able to be off these medications and on CBD oil, would I hear her say “mom” or “I love you” one day? This is something I hope I get the chance to find out.