It’s been a while since I’ve posted and in my last post we were preparing for Paige’s 24 hour EEG and I apologize to have left everyone hanging with the results.
Long story short, there were no changes from her last EEG. That’s good news! BUT, after this one, her neurologists recommended putting her on anti-seizure medication. While no seizures were present, Paige’s EEG showed to have a lot of “seizure like tendencies”. After talking about the option with Andrew, we initially decided to hold off on the medicine because she wasn’t actually having them.
We’ve noticed some questionable movements from her like squinting her eyes, stiffening her muscles, and holding her breath. We kept a close eye on them and sent videos to her neurologist asking his advice. Her neuro called back and told me the movements we were seeing didn’t look convincing to him and he supported our decision to hold off on medication.
A few days later, however, her Occupational Therapist was working with her and noticed the clenching of the fists, holding of breath, squinting, and hunching over all at once. Before, they were here and there and were very quick. This time, her activity lasted a half an hour and they were hard to stop. Paige’s OT was concerned and agreed it definitely looked like something. We cut the session short and I decided it was time to go to the hospital. Luckily, Andrew was on his way home from work and I was able to take her straight to Children’s.
When we got there, Paige’s activity was still present and the neuros on call requested a 1 hour EEG. While they were asking me questions and getting ready to start, Paige started clenching, held her breath, and definitely stiffened up. Of course, while I hate to see this, I was relieved the neuros saw it in person. Right then and there, we decided it couldn’t hurt to start the medicine. Her doctors agreed she was stable enough to go home and we left with a prescription for Keppra. The medication works on a number of seizures and has very little side effects so I was happy about that.
Paige’s regular neurologist called back a week later and said that he read over both of her recent EEGs and told me that no seizures showed up and she was NOT having them. Again, GREAT NEWS, but it still didn’t explain her questionable movements.
Funny thing is, the medicine seems to be working in different ways! Her “seizure like activity” has definitely lessened and she seems to be more cognizant. When she’s mad, she’s M.A.D! When she’s happy she laughs more. A wider range of emotion is present and we’ve started to notice more communication from her.
Before we do anything with her, we talk to her about it and ask her questions. Often, we know exactly how she feels about it. She loves her bath and when we ask if she wants one, she gets noticeably excited. When we ask her if she’s hungry she grunts and we know that means ‘yes’. When she SEES her stander she SCREAMS! We know she hates that. Paige obviously gets excited over bath, food, car rides, shopping trips, and when Dora the Explorer comes on. She does NOT like her stander, toys with loud bells and whistles, and getting her diaper changed.
This may be a pretty big goal, but I’m going to try to ‘potty train’ her soon. I know that she’ll always be in a diaper, but I’m going to start to sit her on the potty to get her used to the feeling. Maybe some day she’ll learn to hold it or wait till she gets the potty cue to actually go in it. Paige constantly shows us she’s more capable of doing things we didn’t think are possible so it’s worth a try.
Paige’s big bro, Will, is also doing well. He got completely spoiled over Christmas and is still loving his toys. He loves school and playing with his buds. He’s super creative and has a wonderful imagination! Paw Patrol and Ninja Turtles reign supreme in our house and he loves to play X-Box (using a fake controller) with his daddy. He’s also very excited about taking ice skating lessons in March!
Next month, Andrew and I will be celebrating our 8 year ‘dating anniversary’ on a Gateway Clipper dinner cruise and will thoroughly enjoy our date night!