James was diagnosed with Alternating Hemiplegia of Childhood around his first birthday. It had been a tumultuous year leading up to this point so his eventual diagnosis was not a surprise to us.
It all started the night after James was born. The NICU doctors came to see us and said that our little tiny 8lb 6oz boy was possibly suffering from seizures. He was doing strange posturing and would need to be closely monitored in the “Special Care” Nursery. After 10 days and many rounds of test nothing came back conclusive. It was thought that perhaps he was suffering from a major headache and that he’d be fine.
During that first year we noticed that James would do “funny things”. Sometimes he would do something strange with his mouth or he would look like he was in slow motion. When we would attend large parties with a lot of stimulation he would go cross eyed and tense up. Only when I removed him to a quiet place and he took a nap would he recover. We had numerous doctors appointments and 2 hospital stays in those first months. James had an EEG, EKG, MRI and all results were returning as normal. No one could figure out why our boy was acting so strangely.
It was in Jan 2014 that James had his first full body episode. We had taken him to see his pediatrician and she sent us off to Boston Children’s Hospital hoping that he had a bowl problem. Due to the trauma of being in the ER and not being able to rest at all this full body paralysis episode lasted for 10 days. Again, numerous tests were done and again all things were normal. We were even asked if James had eaten honey in the off chance he had Botulism.
It was a very scary and frustrating part of our lives. When James finally recovered we went home with a few blood tests still pending. Of course, doctors tell you not to Google but you do so anyway and in doing our own research we had a feeling that James ulitmately had Alternating Hemiplegia of Childhood. That diagnosis was confirmed in April 2015.
Since then James has had episodes on and off every month. He started taking Flunarizine soon after his diagnosis and we do notice that it helps dim the severity of his episodes. Most of his episodes are mild, maybe an arm cramp or limpness on one side. He usually recovers with a nap and a good snack.
Despite all these physical complications, James is an endearing and happy little boy. He loves “cooking in his kitchen”, hanging out with Cookie Monster, dancing to the latest hits (“Shut Up and Dance” is his current go to!), and giving his brother extreme hugs. He is working on his speech and surprises us everyday with what he can communicate.
I remember when we first learned about James’ diagnosis my mother said, “He will surprise everyone.” I keep that motto in my head each time I see him doing something I would not have though possible for a kid with AHC.
He has regular visits with a Physical, Occupational and Speech Therapists. He also attends a weekly drop off group which has been a huge help to his development. He loves playing with his friends and works hard to keep up with his peers.
AHC is no doubt a frustrating disorder. No matter how predictable it can be it is also highly unpredictable. We know that James’ triggers could be overstimulation, exhaustion, teething, a growth spurt, change in temperature, a sickness, maybe a combo of those or just one of those or NONE. I’ll always be amazed when we go somewhere and I’ll think, “Oh boy here we go, he’s SO going to break down,” and then nothing happens. To say it plays with your emotions is an understatement. As is parent, I’ve learned to appreciate each moment as it comes and not think to hard in the future.
James is an amazing little boy. He’s taught me so much compassion and perspective. He’s a fighter and I know once we get a treatment he will be the first to advocate for others.
We have received such great support from our family, friends and community. I truly can say that James is thriving because of this help and guidance. We are always happy to share James story because we know awareness is power. Power to bring the change we need to give the lives of our AHC champions more of these amazing “surprises”.
About the author:
Margaux lives in the Boston area with her husband Jim, AHC Champion James and their youngest son Benjamin.