Dear Son Medical Update

It's been a tough few days for Dear Son. As I mentioned, he had a bad seizure Thursday morning before school. After administering Diastat (a rectal Valium), the seizure stopped but he slept most of the day. He was awake for around two hours or so that evening, but that was it. He continued to have difficulty on Friday, Saturday and Sunday. First, he choked on his saliva a lot at night as the secretions are getting extremely difficult to manage. There seems to be a correlation between the increased seizure activity and the secretions; when seizures increase, secretions increase and therefore it's harder for him to manage. It's not only the swallowing that is difficult for him, but he is pretty weak and has trouble coughing. While the Diastat could have supressed the coughing, I really think the weakness in coughing is linked to increased deterioration.

In addition to the secretions, he has slept basically the entire time since Thursday. He opened his eyes briefly over the last few days but seemed to be having a lot of seizure activity. I did try moving him to the living room and putting him in the recliner however he never really woke up.

Today, he seems a little better. His eyes are open, he is coherent and while he is still sleeping somewhat, when he is awake, he is happy and is aware of what is going on. I spoke with the doctor on Friday and they increased his medication so maybe that is kicking in a bit. We are also trying a new extended release version of one of his seizure medications so hopefully that will help him a bit.

Tomorrow he returns to school. I am hoping that as long as he does well today, he should be able to go tomorrow. We follow up with the doctor later this month.

*Congratulations to Angela Doyle, one of our Make-A-Wish sponsors. She finished the Chicago Marathon yesterday; she ran it for Dear Son. She finished the race, along with several others from the Chicago Make-A-Wish Team, then flew back home. We appreciate her support.