At 3 months old, she had an episode where she looked as if she was in a coma, breathing yes, but no movement, except one eye moved rapidly back and forth. We rushed her to the ER and the Angel team from a hospital an hour away came to get her. EEG, MRI, spinal taps, blood work, you name it and that child was tested for it. Nothing was found. She always returned to ‘normal’. We were sent home with no answers. At 6 months another episode, except the entire right side of her body would not move following the arching body and rapid eye movement. Another hospital stay, MRI, EEG and no answers. She was ‘normal’ again. At 9 months, she became fully paralyzed. Back to the hospital we went, maybe it was hemiplegic migraines and I was sent back home with a baby who couldn’t eat, drink, or even smile. A home health nurse came to my house the next day. This person, who had never met me, said, “Do not be content with no diagnosis. There’s something wrong with your child and only you can speak for her.” I packed Cassidy up to get a second opinion. I walked into the ER and said something is wrong with my child. We have had all these tests run so these will not be done again. But I am not leaving until you tell me what is wrong with my little girl. After 10 months, lots of picks and prods and so many tests, we had our answer….Alternating Hemiplegia of Childhood. The unknown is so much scarier than what is known. After reading what little information was available, it all made sense. At least I knew what was causing these scary episodes. Then I began to research and connect with mothers who were also raising children with AHC.
EEG, MRI, spinal taps, blood work, you name it and that child was tested for it.
Cassidy is now almost 3 years old. She can walk; she can talk (boy, can she talk); and entertain anyone who will watch her. She still has episodes and it can be very scary. Episodes can affect the left or right side and the worst is when it takes her entire body. She’s not able to eat, drink, or take medicine. These episodes usually last 3-5 days, but can be longer. She takes a drug called Flunarizine that has to be ordered from Canada because it is not FDA approved. This drug is the only thing, so far, that is recommended for children with AHC. I am not sure it helps Cassidy, but I am not brave enough to take her off of it either. Our family is learning to live life with AHC. My baby girl does love bows, dresses and dolls. We are blessed every day to have this sweet girl in our lives. We have HOPE that there will one day be a treatment for these beautiful children who are battling AHC!
She can walk; she can talk (boy, can she talk); and entertain anyone who will watch her.