Peter update - Dec.4,2011

For those who don't follow me on Facebook, here's a brief update on Peter.

I was concerned that he might be having what is called "infantile spasms" and got an EEG done and a visit with a neurologist. After that we had another EEG (a longer one), followed by a switch to a different neurologist. This one got me in to see him 3 weeks before the scheduled appointment and then recommended we admit Peter to Duke Hospital (where this doctor works) for a "video EEG" (they videotape while they have him hooked up to an EEG machine) so that they could see what he was doing at the time when he was having the suspected spasms, and coordinate that with what the EEG showed his brain doing. And while we were there, they could run a bunch more tests on Peter to see if they could find out what caused the spasms (or rule out things that didn't). So we did that last week, and they did diagnose him as having infantile spasms, and started him on a potent drug called Acthar (ACTH). The only form this comes in is administered by intramuscular injection - i.e., I have to give him a shot in his thigh twice a day for 2 weeks or so, followed by once a day for a few weeks to taper the drug off. We are praying that this would indeed stop the spasms for good and also not cause some of the possible horrible side effects that can result. Please pray with us for these things.

Peter has gotten delayed in his development and is probably closer to a 2-3 month old in development, though he's over 7 months old in age. This may be due in large part to infantile spasms, as they are associated with developmental delay. We are praying that Peter will be able to develop better after this treatment, if indeed it can stop the spasms.