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The Long Story

To some it may seem like I dropped off the map for awhile. It is always hard for me to write about what is going on when I am in the middle of it happening. I am a processor - analyzing and dissecting experiences before I make sense of them. This long version is a timeline, a written record of Ben's behavior, our reaction and the doctor's response. It will serve as an invaluable tool for me when I meet with the doctor in June.

April 25 - Ben participated in the Special Olympics. Although he had a big and busy day, he did not go to sleep. He did not sleep until the wee hours of the night, or early morning, depending on your viewpoint.

April 26 - April 30 - Ben did not sleep well.

April 29 - Ben seemed ready to crash for an early night.  The craziness was over. (Little did I know it was just the beginning.)

April 30 - Ben came home from school at 11am because he was sick at school and had seizures. I called the neurologist. Doctor increased current meds to 6 pills in the morning and 2 in the afternoon.

April 30 - I saw the seizures - head falling forward, 10-15 times in one sitting.

May 1-2 - Ben continued to have seizures in the tub, while sitting on the floor, on the toilet...everywhere.

May 4-7 - Grandpa and Nona visited. Ben was not himself. He was not happy or engaged. I kept him in his chair for safety. I limited his bath time. He ate locked in his chair. He was not really even trying to move around too much. If he sat on the floor or crawled, had a seizure, then he would hit the floor, hard.

May 8 - Ben was not walking - I was dragging him. His motor activities were decreasing.

In the middle of the night, I realized that I needed to alert school and therapists about Ben's situation.

I waited til morning (so they did not see a 3am timestamp on the email and think I was a lunatic) and asked them to disregard my usual call for independence and keep the seat in Ben's walker, use the Convaid chair and not to seat him near a table where he could hit his face. The physical therapist at school made these changes immediately.

May 9-15 - More of the same. I called the neurologist again to give them an update on Ben's condition. The additional meds needed 10-14 days to kick-in. I did not see an improvement so they scheduled an EEG for May 15.

May 15 - Ben had an EEG at the doctor's office.

May 17 - Ben refused to wake up in the morning. I dressed him for school with his eyes closed. I was worried something was wrong. We kept him home and he slept until 11am.

I called doctor to let them know that Ben was not himself. He was acting strange and regressing. He was still having multiple seizures.

At suggestion of doctor, Ben had blood work done to check levels of medication in his blood.
The doctor called in a new medication to add to the regimen. Start with 1/2 pill at night and then increase to another 1/2 pill in the morning. Still taking the other 8 pills.

May 18 - Seizures stopped and I slowly saw Ben become more like himself. Just a little though. He climbed to the dining room table and sat in a chair, something he had not done in awhile.

Presently, Ben has not had a seizure since mid-May. We introduce the new 1/2 pill today. I am still not thrilled by his mobility or mood. I am puzzled and very concerned about his inability to walk as well as he was. Is it because we make him stay in a seated position for safety? Stay seated and legs get weak and then harder to walk? So I am not sure if the seizures are the cause, the medication or the lack of stimulation for the past few weeks.

And going back to April 25, is Ben's inability to sleep a sign that his brain is gearing up for seizures or is it a coincidence?

All these questions swim in my head. I do not have answers and I do not believe a doctor would have a definite one either. I think it is all possible.

Ryan, whose heart is always in the right place, takes me out of my analytical, clinical mind, and says, "I cannot imagine how it must feel for Ben."



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