Today Bex was scheduled for her two-week follow-up EEG. As Chris mentioned in the Side Effects posts, the ACTH appears to be stopping the spasms, but the real test is the EEG to determine if her brain waves are normalizing and no longer showing hypsarrhythmia (the abnormal brain wave pattern associated with Infantile Spasms). We were told to be at the neurologist's office at 8:15. Surprisingly, we were right on time, which is impressive considering we had to get her fed, give her oral meds and her injection as well as get ourselves ready and battle Charlotte rush hour traffic. When I went to check her in, the receptionist looked at me like I was crazy when I said we were checking in for Bex's EEG. Long story short.....but this appointment was scheduled by the dispatch coordinator at the hospital. They scheduled us a neurology follow-up appointment...not an EEG. The office that we were at doesn't even do EEGs. Chris and I were beyond frustrated - a) because this morning was a complete waste of our time and b) it means more stress/worry waiting to find out the results of this EEG.
One thing that we are definitely learning throughout this process is that we really need to double check things when it comes to communication between different doctor's offices as well as doctor's offices and insurance. For example, we were sent 3 vials of the ACTH gel for her injections. The doctor's office told us that would be enough for the full 8 weeks of injections. When we went through the first vial in a week, we knew that couldn't be right. After some investigating and phone calls on our part, we figured out that insurance only sent us 30 days worth of the medicine. Thank goodness we caught that early enough because if we ran out of the ACTH gel, Bex would have to be readmitted to the hospital until more could be delivered to our house.
After some calling around by the neurologist's office, they were able to squeeze Bex in for an EEG tomorrow morning at 10:30. We are hoping to have the results tomorrow by the end of the day, so we don't have to wait all weekend.
In other news.....Bex did have her weekly check-up with the pediatrician yesterday. Her blood pressure was good. She was showing no signs of infection. Today we got the results from her blood work that they do bi-weekly to look at liver functioning, kidney functioning, etc. and everything was looking good with that. We continue to be thankful that she is not showing any serious side effects at this point! She did gain an impressive pound and a half in a week due her increased appetite, but this is the one time in her life that extra chubby cheeks are irresistible!