Jaron is just not himself while on these high-powered steroids.  I cannot wait till this "famine from smiling" goes away.  My heart aches to see him smile and coo again.  He is looking chubbier but hasn't gained more than an ounce since he started this medicine which was supposed to cause excessive weight gain.  We are down to one dose a day and actually he seems to be having less spasms.  3 or 4 compared to 5 or 6.  Not sure what that means.  When he was on the highest dose, 4 times a day, he had the most severe and frequent spasms.  About a week ago he had a really scary seizure.  It was 10:30 p.m. and he "got stuck" in a spasm and his face turned blue.  I called 911.  When they got here he was breathing again and stable but it was super scary.  Did I ever mention, I HATE seizures?  At the appointment with the neurologist today, we discussed the next two possibilities for medications.  One is considered to be more effective in treating infantile spasms but it has a very serious and likely side-effect of permanent peripheral vision damage/loss.  It is a highly regulated medication and has only been FDA approved in America for one year.  The other option we are trying to get into is the ketogenic diet.  Apparently, there is only one doctor in the state of OR who manages this diet.  He is at OHSU and as you can imagine, very busy.   We aren't sure if he will accept Jaron as a patient yet.  I have done a little research and found out about another more alternative diet called the GAPS diet but I'm not sure how to do this with an infant and a g-tube and all.  This whole process is just so foreign to me and there are no absolute answers.  Seizures are extremely difficult to control.  What works for one person, may be totally ineffective for the next, even when they have the same diagnosis. It's just crazy.

Jaron in his "steroid stupor"

See what I mean?  He's just not himself :(  But he's still cute!