This was quite the experience. James had an at home video EEG (VEEG) over the past couple of days to record his seizure/infantile spasm activity. He is currently on 4 antiseizure meds to control his seizures and spasms which make him sleep most of the day. We’re hoping that we…
This is interesting, and a bit concerning. One of the parents in an infantile spasms support group on Facebook that Stacy is a part of posted a link to a press release about the FDA approving ACTH for infantile spasms. The press release can be found here: https://www.prnewswire.com/news-releases/fda-approves-hp-acthar-gel-for-the-treatment-of-infantile-spasms-105024204.html I think…
October 15th is Infant Loss Remembrance Day. If you’ve recently stumbled across this blog and haven’t read Our Story, we lost our first son, Jackson, to Trisomy 18 before he was born. It was a very dark time for Stacy and me, but somehow we managed to get through it.…
Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional…
Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional…
Stacy used to be an early childhood special ed teacher so she is aware of many of the devices and adaptive things that are available to those with special needs. This is a whole new world to me. Stacy was talking with a woman from early intervention about James’ therapies…
James got his first pair of glasses in August, but we thought we would try a different style. Here's a pic of his first pair of glasses: The problem we have with those glasses are that if he has a spasm or seizure, he turns his head which knocks…