Today is Jenelle's 7th day on the ACTH injections. Poor little thing is starting to get track marks on her thighs, but she is still taking the shots well and has only cried once or twice. We had a scare on Sunday with her blood pressure reaching 190 over 160 - too high even for an adult. We are using just a hand pump blood pressure gage with a stethoscope, but I asked my next door neighbor who is in nursing school to come check me. She happened to have a friend visiting who was a Nurse at CHOC for 12 years and she checked it as well. Both got similar readings. So, we went to the emergency on Sunday night at the request of the doctor. We didn't even wait to get in, and wouldn't you know her pressure dropped to 109 over 64 when they first checked it. They monitored her in the ER for two hours and sent us home. Better safe than sorry!
Jenelle is still having seizures. Yesterday she had more than any other day on the injections so far. While this is discouraging, I am being told by fellow "IS parents" I've met on an internet support group for Infantile Spasms that it could take the full two to three weeks to stop the seizures. In fact, one parent said their child had a very bad day of seizures before she stopped completely the following day. The "grand finale", or so she described. Hopefully yesterday was that for Jenelle.
Other than the blood pressure, Jenelle is doing well. She sleeps a lot, and seems to be more withdrawn, but she does have her playful moments when she turns into a cooing chatter box, and rolls across the room. I will keep posting update weekly.