The other night I decided that I would lay down with RoseBud and possibly video tape her night time seizure activity to show to her neurologist. RoseBud sleeps on the bottom bunk bed, JuneBug sleeps on the top bunk. As we laid there, I couldn’t believe how hard it was for JuneBug to get comfortable. After almost 2 hours, I silently got up and hissed at JuneBug”will you PLEASE stop flipping and flopping?!!!” And then she started snoring. I turned my video camera on her, and I sat there in awe. For two hours I had been feeling her shake the bed, and here she was, sound asleep.
Two minutes into my video taping, JuneBug’s whole body jumped so violently that the bed rammed into my camera hard enough to nearly knock the camera out of my hands! Then two minutes later, I caught a different angle – and I’m fairly sure that she was having myoclonic seizures. Every 2 – 4 minutes for HOURS. The next morning she was extremely tired, grumpy and out of sorts. Unfortunately, this is a very common occurrence.
Over a year ago I took JuneBug off her anti-seizure medication. I hadn’t seen any seizures in years even though some abnormal EEG results showed ‘potential areas’ of seizure activity. For over a year I haven’t seen any signs of her epilepsy re-emerging, until this night.
Meanwhile, later this same day JuneBug had a ‘dizzy episode’ during school. After discussing it with the teacher, we are pretty sure that this was a seizure. Because there was no opening at the neurologist office for a few weeks, I took her to the pediatrician. This was actually a blessing, because after the office consultation the pediatrician contacted the neurologist. One thing led to another and within days we have labs, an EEG and a neurologist appointment!
I have to say that I am thrilled that JuneBug’s medical team could respond so promptly to her issues. However, I’m not so excited about the possibility of her having night time seizures again. JuneBug has always battled taking medications and she hates being ‘different’.
Autism spectrum disorder, attention deficit disorder, auditory processing disorder. Oh…and Epilepsy. Again (or should I say ‘still’?). It isn’t that JuneBug’s got these ‘labels’ tattooed to her forehead for all to see, but these disorders cause real trouble with her social interactions. She is working hard to overcome her differences, and I think she is doing a fairly good job of it!
But having to go back on medication is just one more thing, in her mind, that makes her stand out from ‘normal’.
Once our Autism Service Dog comes to live with us, I hope that JuneBug will see herself as special, unique, and loved. I can only hope that the unconditional love this dog will give her will help her learn to accept herself just as she is!