Sunshine and Shadows

Welcome back to the house of hedgehogs, dogs, a cat, seizures, and autism. Mr. Boo had an extra-long MEA weekend as he had a series of seizures Tuesday and night and very early Wednesday morning. The first seizure only lasted about a minute, but the one that occurred at 3 am needed rescue meds. It took him a long time to settle down after the seizure(s) at 3am. I am thankful for the wonderful on call nurses at Gillette Children’s Hospital, who can answer my questions at all hours of the day and night.

By Saturday, Boo seemed back to normal. He went to Special Olympics bowling and was totally chuffed to bowl a 96 and beat his daddy. Robert had never bowled using a ramp before, so Boo had the upper hand. Later that afternoon, we went for a walk, and then swung by Davanni’s for a drink and treats. I am thrilled that Boo can now easily walk 3 miles without needing to stop or sit down. The Topomax was good for keeping the seizures at bay, but it kept him from eating and being able to exercise. I am not certain that we have him on the right dose of Fycompa, yet, but the side effects are much less severe. We give it to him in the evening and it seems to make him a little sleepy and dizzy. He is a bit out of it when he wakes up in the morning, but this quickly passes when he sees the bus coming down the street.

He is on three different wait lists for day programs starting July of next year. So far, I have the best vibe from MSS, Midwest Special Services. They have answered all my questions and invite us to tour the facility in early November. Later in November, they have invited Boo’s entire class to come and visit, to see what life is like after graduation. Boo loves the arts, music, and dance and MSS offers this in abundance. They also do lots of trips out into the community and have opportunities for volunteer work. We are excited to go visit them in person.

I have said many times that Autism does not ruffle my feathers, but epilepsy scares the heck out of me. I can prepare for the ins and outs of Autism, but I can rarely tell when a seizure is about to strike. Interestingly, I think Mr. Boo can tell when a seizure is coming. Last Tuesday night I was out for a run. Boo was sitting on the couch with Robert. Suddenly, he got up and brought Robert his backpack. This is where we keep his emergency meds. Then, he sat back down on the couch and seemed to be waiting. About 2 minutes later he had a seizure. I think he knew he was about to seize and made sure he had his meds nearby and was close to his daddy, who could help him. The second seizure happened in his sleep, so there was no preparing for that one. I wonder if he sees an aura, like I do before I have a migraine. Several adult epileptics I have talked to say that they have an aura or a premonition before a seizure hits. I have the feeling this is the case for Mr. Boo.

Enjoy this last day of warmth. The wind has picked up and I can feel a cold front moving in. I have heard that changes in barometric pressure can cause seizure activity. It would not surprise me, but I am really hoping that Boo can have a peaceful week at school with no pesky seizures. Be good humans, and we will be in touch.

Author: snort262

I am a wife, mom, long distance runner and fierce autism advocate. My background is in education. Currently, I am a nanny, a tutor, and an autism consultant.

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