Dec 11, 2016 Latest post:
Jan 31, 2018
As most of you already know when Cash was 3 weeks old he began having seizures. Since then we've had some ups and downs. Over the past 9 months we still have no cause or ideas why he has the seizures. We've been working with the AEA early access program with doing in home physical therapy every two weeks to work on his gross motor delays to help with reaching his milestones and he is making improvements. There's been concern with episodes of vision loss. Struggling with constipation due to his low tone throughout his trunk or as a side effect from his medication, as well as many other side effects. Back in September when we were originally to come to Mayo he ended up spiking a fever and getting croup. He was unable to keep any medications (for seizure or to reduce fever) down due to the cough which lead to him being hospitalized at the University of Iowa and getting hooked up to the Continuous Video EEG (VEEG). During that stay we discovered that what were once seizure no longer were seizures, but there was concern with him arching back very briefly w/ a fixed gaze. Since then it has been an ongoing struggle to figure out what is or is not a seizure. Recently before Thanksgiving at his appointment with the CDD we found out that he hasn't really gained weight since this past summer. With some of the arching episodes being associated with feeding we thought that he could be dealing with reflux (GERD) which would affect his appetite. We started him on generic Zantac twice a day but haven't noticed much improvement. Also while at the CDD they changed his diagnosis from truncal hypotonia to all over hypotonia. While at Mayo clinic we will be seeing neurology, endocrinology (to address growth/wt. issues), and gastroenterology. Also while we are here he will undergo a series of testing, which includes MRI w/ sedation, sleep deprived EEG, and inpatient continuous VEEG. Wish us luck and as always all prayers are welcome.