An Appointment With Heartbreak

A year and a half ago my daughter was diagnosed with epilepsy.  She was just turning four, and what she called “her ears turning off” were in fact petit mal seizures, which we were able to completely control with medication.  She had no incidents for almost a year, and then last Christmas there were two reported possible seizures, although we weren’t sure that’s what they were.  The doctors decided to increase slightly the dose of medicine that she was taking, mostly due to the fact that she had grown, and other than the twice daily medication we really haven’t thought about it much since then.  Until yesterday.

There was no school yesterday, being Yom Kippur, so it seemed like the perfect day to schedule Ruby’s follow-up EEG and general brain status update.  We were going to need to be at the hospital for several hours and they refused to schedule the appointment after noon because of it’s length, so if we didn’t want her to miss a day of school, yesterday was the only choice.  We dragged ourselves out of bed extra early and made it to the hospital by 7:30 for checking in, my daughter wearing a pink sleeper and Spongebob rainboots.

Ruby had fond memories of her previous appointment, in which she got to play with a pinwheel and have lights flashed onto her, so she was excited.  Her mother and I were also a little excited, because if everything went well, we would begin to taper her off of the medication and she could officially be declared “grown out of” her epilepsy.  Registration was relatively painless and we went straight up to the room where the doctor began to glue the wires to my daughter’s head.

Now, I have to tell you up front that we did not officially get any results back from the woman running the test.  She will send everything to our actual doctor, and he will look at it and get back to us and give us the lowdown, so all I have to go on is what I personally observed and my own non-medical opinion.  But what I can tell you is how hard it was to keep it together as I saw my daughter have seizure after seizure during the test.  Even on the medication, that damned pinwheel shut her down after only about one minute of blowing on it, and they made her blow on it for three.

To be fair, though those were three of the worst minutes of my life, these seizures were far shorter and milder than what we had been experiencing 18 months ago.  But back then we had kind of gotten used to seeing them and we came in with concern and worry in our hearts.  Yesterday we had entered the lab with hope and a sense that we might be at the end of the tunnel, and now it didn’t seem that this was the case.  I reached for my wife, seeing that she was also fighting back tears, as we watched Ruby check out for a few seconds at a time over and over again.  I have found nothing worse in my life than seeing something terrible happening to my child and not being able to do anything about it.  I would gladly give up all of my time, talent, and resources if it meant not seeing her like that again, but sadly there is nothing I have that I can trade for the health of my daughter.

Perhaps I am being overly dramatic.  Ruby was exhausted by the episodes, but she recovered and as we left the appointment she was excited to go get a bagel and told us that she had not had any seizures, so she was happy.  We didn’t have the heart to tell her what we saw, so we got her the bagel, and then I brought her home and let her do whatever she wanted all day long.  We spent two hours at the Burger King playground.  She ran and played and had a great time and seemed to be suffering no ill effects.  And maybe she really is fine.  I am not a doctor.  Maybe those mini-seizures she was having were just symptoms of a pinwheel allergy and not part of her epilepsy.  At this point all I can do is wait for the call from the doctor to discuss the results.  I am still hopeful, and I still think things will be fine in the long run.  But yesterday was heartbreaking, and I could do with as few appointments like that as possible.