Whenever I get the chance to speak with other moms who have kids with special needs, I always ask if they knew something was different about their child while they were pregnant. The connection between mother and child, from the first heartbeat, is indescribable. Interesting enough, most mothers day no, that they didn’t feel that anything was wrong until their child was born. Now, they say that redheads tend to be more “in tune” with their bodies (not sure I believe that), but I do recall several times that I felt something was different when I was pregnant with G. Maybe it was the doctor finding cysts on his brain, or the fact that I wasn’t puking all day like I was when pregnant with Roslynn, but I did feel something was off a bit.
Motherly instincts is something that has interested in me since seeing an episode of “Unsolved Mysteries”, one day while I was home sick from school. A segment was done about mothers who had odd feelings about their kids, only to find that they felt these odd feelings at the exact same time a traumatic event was happening to their child. Some of the examples were when a mother was washing dishes and her 6 month-old daughter was silently choking on a small balloon in the living room with her father (who was reading a newspaper). The other example that I remember seeing was when a mother was visiting a friend across town and the mother had a weird feeling about her son, and she called the child’s school and her son had fallen and broken his arm at the exact same time she felt weird. Not saying that all mothers feel “off” when their child has a traumatic experience, but I too have felt these odd feelings on several occasions. The most recent one being yesterday morning.
This week at the Martin household has proven to be the craziest yet. Whenever I think things can’t get more chaotic, the next day typically proves me wrong. Not sure if I was feeling the stress because of work, or if it was the stress of trying to manage G’s appointments, but Monday felt like it should have been Friday. Never a good sign to start the week. Towards the end of last week, Greyson had a medicine increase in his Trileptal, and had a seizure and very difficult day that Thursday. This prompted Dr. Comi to order new imagining, an EEG and labs.
By Tuesday, I hadn’t heard from Kennedy Kreiger’s scheduling office, so I was going to call and schedule the tests as soon as I was home from work. Unfortunately, Greyson was in one of his manic/extremely hyperactive episodes, so the scheduling slipped my mind almost instantly. His behaviors had gotten so bad, that I made Derek take him on a car ride to calm him. Turns out, G just screamed the entire 45 minutes in the car. He did appear a little more calm once they got home and G finally fell asleep on Derek’s shoulder.
About 15 minutes later, I noticed Greyson was moving his mouth in a strange manner, almost like he was trying to talk. I quickly realized that he was going into a seizure.
Naturally, Mr. Duke was all over him. The video shows Greyson seizing on the floor, as Duke barks repeatedly because I told him to back up and give G some space (he didn’t like my request). He ended up coming out of the seizure on his own and slept with Derek for the rest of the evening.
Wednesday we had a follow-up with G’s child psychiatrist and increased his Risperdal dose very minimally, since he appears to be responding well to the dose he was on. His ABA and Special Instructor sessions at the house also appeared to go very well, so I was hopeful for a quiet end to the week. Thursday did hold true to my hopes.
Friday morning, I woke up at 4:30 am as I always do. I did remember hearing G crying/fussing a bit overnight, but didn’t think much of it. I continued my morning routine, but I had that indescribable “something isn’t right” feeling. I checked the nursery camera and saw that G wasn’t in his crib (didn’t really surprise me since I heard him fussing around 1 am), so I switched to the camera we have downstairs. Derek was asleep on the couch and G was right next to him. I almost switched back over to the news channel I was watching, but I decided to zoom in on G. He was in an odd position- almost sitting up with his face in the crack of the sofa cushions and he was moving in an odd way. I quickly run downstairs and see Greyson having a significant generalized seizure.
Side note, quickly: I only film the seizures if I have another adult with me to assist. We have been asked to do so by the neurologist, so she can see how the seizures are similar and how they can be different.
As you can see in the video, he really was convulsing. I don’t know how long he had been having the seizure before I saw it, but from the time I ran downstairs, until I administered the emergency medicine, it was about 5 mins or so. I truly felt that unless he had his emergency medicine, he wouldn’t have come out of the seizure independently. Luckily the meds kicked in fairly quickly and the seizure stopped. The remainder of Friday was accompanied by aggression, self-injury and lots of crying. By 5 pm, I was dead from the work week and both kids were tired.
The next few weeks will test our patience, as we have several different appointments in Lancaster, Philadelphia and Baltimore. Really praying that we can get some help and get these seizures and behaviors under control.
Stay tuned for updates.