Infantile Spasms

There seems to be a day, a week or a month for everything these days. If you have a cause or a favorite animal, hobby, or food someone out there, somewhere, has designated a day for you to celebrate, remember, fundraise, or sympathize. We must admit that we took advantage of National Coffee Day at the end of September and rolled our eyes at International Dog Biscuit Appreciation Day (Feb. 23rd in case you want to prep celebrations early). It feels as though we become immune to designated times for causes because so many silly (but fun!) ones have crept in. Even with the inundation of "days" and "weeks" this week seems important for us to mention...not to share another piece of Brady's story...but to truly spread awareness for quick diagnosis and immediate treatment of infantile spasms.

December 1-7, 2016 is Infantile Spasm Awareness Week. Infantile Spasms (previously more commonly referred to as West Sydrome) is considered a rare but catostrophic form of childhood epilepsy. Since only about one in every 2,000 children is facing IS, even some medical professionals we have encountered have been unaware of or not very educated on this diagnosis. One statistic we read said the average pediatrician will only see one, maybe two, cases in his or her career. Typical profiles of children who develop infantile spasms include babies with Downs Syndrome, Tuberous Sclerosis, Dravet Syndrome and brain injury. It is easier to spot and diagnose in these cases. But there are a plethora of other causes and unfortunately sometimes no reason known (cryptogenic). Often parents think an infant has a strong startle reflex or is reacting to reflux. For Brady, infantile spasms came as a direct result of his anoxic brain injury following cardiac arrest due to near miss SIDS. We didn't have to do extensive tests or wonder why. We also did not fully understand what infantile spasms were or what they can mean for children Brady's age.