Answers and Plans
I'm a pushy mom when I need to be. No doubt about it - my babies need something, and I make sure it happens and fast. This whole thing with Heather has been no exception.
We had our EEG last Wednesday. It was quick, easy and painless, the worst part being staying up all night the night before. In retrospect, though, the fact that it took so little time to complete should have been a red flag to me. They had told me to expect 2 hours, yet we were out of there in less than an hour. It didn't occur to me then, but I know now that it's because in that short time, they were able to get enough data to see that there was a problem.
So this past Tuesday the pediatrician's office calls. Actually, the pediatrician herself, Dr. Marcus, called. At 5:30pm, as soon as she got the results of the EEG. She knew that I had called the day before wondering if they had gotten the results, so I think she knew that I was anxious to get some answers.
All she was able to tell me was that it was abnormal, and that the next step was an MRI and a visit to the neurologist. Her assistant, secretary, nurse, whatever she is, had already called one of the imaging centers and found out that they were booked for two months out for pediatric MRIs, but the other had sooner availabilities. I, of course, was at the park (isn't that how it always happens - these calls come as soon as you're out and about and unable to really deal with them?) and didn't have a pen or paper, so she told me that Amy (her right hand I mentioned earlier) would call me in the morning to give me all the information for making appointments.
Sure enough, Amy called at 8:15 yesterday morning with names and phone numbers. Being me, I immediately started calling to get the wheels in motion - I know that these things can take time and, frankly, time is something I don't have a whole lot of. In a matter of a couple of weeks we'll either be moving to NC or changing insurance because Hans has changed companies. Either way, this is something that needed to be taken care of immediately for scheduling, financial and health reasons.
Of course, it couldn't be so easy as calling, getting appointments right away and being done with it. First, the imaging center took all my information, then told me that they couldn't schedule an appointment without the rx in hand. Fine, I call Amy back, get her to fax it over, no problem. While I'm waiting for them to have appropriate time to recieve the fax, I decided to start trying to call the 2 pediatric neurologists in the area on my insurance. Of course the first, the one who read the EEG initially, is booked until the end of November, and I should find another. The other isn't taking new patients. Beautiful. So I call Amy again, this time leaving a message letting her know what's going on (I bet she's tired of talking to me by this point!), then I call the imaging center back. After about 20 minutes of back and forth trying to figure out scheduling with them, we finally get Heather scheduled for an 11:15 appointment on Wednesday, August 15. We have to be there at 7:45, though I don't have a clue why.
Having gotten at least one thing done, and assuming that it's going to be later in the day before I hear anything about the neurologist, I head out to cut the grass. Just as I'm getting started and into my groove, Derek comes out to tell me that the ped has called, but the won't talk to him, only me, so I need to call them back. Okay, I'll do it in an hour when I'm done with the lawn. 5 minutes later - I had literally done one more swath of the yard - Derek comes back out, asking me if 2:30 that afternoon was okay for the neuro appointment. All right, guess I should go in and give someone a call now. So I do. Evidently, Amy had called the first neuro's office and told them that no, I couldn't wait to be seen, that Heather had had a significant episode and needed to get onto a program right away.
We got to the neuro's a little early, did the paperwork for new patients, and saw the doctor. Really nice guy -Dr. Ronald Davis - he was kind and gentle with Heather, who was a bit freaked out since she had a rough visit in the ER. He also explained the EEG results to me as thoroughly as my poor, sleep deprived brain could handle. What he saw was significant, near constant seizure activity in the occipital and temporal lobes on both sides of the brain. I'm still sorting out what that means, but it's not a great thing. Not horrible, but not great. Based on that, and some behavioral questions, he feels that she's been having mini seizures pretty much her whole life. Heck, we just thought she was clumsy and spacey. Don't I feel like an ass now.
He set us up with a treatment plan of Lamictal twice daily to help prevent future seizures, and diazepam rectal injections to use when she does have a seizure that lasts more than 2 minutes. So now the fun begins.
Still, even with what we've learned, I'm honestly not upset or too worried. Thousands of people lead normal lives with epilepsy, and medications have come so far in recent years that the side effects and restrictions for epilepsy patients are very low. I'm just glad that we know what happened that day and why.