Hello Anthony! Hello 2016!

It was long a journey on ACTH.  It took four weeks before we could notice improvements with Anthony's spasms.  It was literally one day they were here, and the next they were gone.  His last spasm was December 7th.

It's weird though because right after the spasms stopped we started noticing more of the ACTH side effects.  We started to wean the drug, but he still had a month of injections before it was fully out of his system.  During the wean he got VERY irritable.  Many, many sleepless nights.  I remember seeing every single hour for a few nights in a row.  He only wanted to sleep in bed with us and wanted to eat all night long.  He also got the "moon face" side effect.  He was very bloated and our Christmas pictures unfortunaley do not look like him at all.

His EEGS looked better and the hypsarrhythmia was gone.  Hyps is the chaos in the brain waves that diagnose an infant with infantile spams.  However, Anthony's EEG was still abnormal.  It still showed flickers in temporal lobes which indicate there could be seizures in his future, but right now they are controlled.

On December 31st 2015 life was good.  Our baby was babbling again!  He was putting his hands together and sucking them!  Tracking, smiling and moving his legs! This was huge!  We were so excited that we went to our friends' house to celebrate the new year.












2016 was already looking brighter!  Welcome back, Anthony!