A Case of the Mondays

I hate seizures. They are horrific. I cannot imagine experiencing one and I know I despise watching my child have one.

On Monday morning, Oliver was standing at the console table we have in front of the TV. It is filled with fidget toys and a basket of baseballs. It is the perfect height for him to lean onto as he watches Mickey Mouse Clubhouse and Peppa Pig. I was in the family room with him around 11:30 when all of a sudden he straightened like a board and fell backwards, smacking his head on our floor. We live on a concrete slab, so his head hit a concrete floor covered in hardwood. I wasn't able to catch him and quickly realized he was having a tonic clonic seizure. I called Matt, no answer. I called him again and he knew to pick up. I explained what was happening. The phone call would time the seizure for me. I tried to grab a blanket to slide underneath him to protect his flailing body from the floor. One minute. Two minutes. Three minutes. He was grimacing and growling. Matt and I were speaking semi-calmly to him words of comfort. Four minutes. The diastat was in the back of the house. I ran back and asked Matt to keep talking to Oliver. I returned to his loving voice bringing comfort. Five minutes. It was time to give the rescue med diastat, which is basically a large dose of Valium, to stop seizure.

***An aside. Really medical professionals. In the midst of someone having a seizure, they are to be rolled over, have their pants pulled down and be given this medication rectally?! Where is the dignity in that?***

At roughly six and a half minutes I was able to give him the drug. Within twenty seconds the seizure stopped and a look of relief came upon his face. It worked! But now we were forced to deal with a possible head injury.

I called Oliver's doctor and thankfully she picked up almost immediately. She confirmed my suspicion that she wanted him to come to the ED at Children's National to be evaluated and get a CT scan to make sure there was no bleeding or fracture.

Matt met me at the hospital an hour later. I was able to grab a little go bag, just in case he was admitted. We were taken back fairly quickly only to wait for hours. The CT scan showed swelling, but no traumatic injury. Neurology didn't want to make any medication changes without Oliver's doctor's input and he was away for the following two days. 

We returned home late that night exhausted. Oliver's arm still bore the sticky residue of his IV. His back and shoulders are bruised. Matt and I were hungry, having only consumed skittles and cheetos. I wrote a long email to his neurologist and texted with his other neurologist at CHoP to let them know what happened and what we were to do next. Thankfully I heard from his local neurologist yesterday morning. He added a new med and Oliver started his first dose last night. It will take us about four weeks to titrate up to his needed dose, but we hope to see improvements.

Oliver is changing before us. Sanfilippo is grabbing tighter onto his fragile body. And I know he is growing tired. I told him Monday, as I tried to hold him, that it wasn't time. And it isn't. But I know the day is approaching and it seems to be quickening its pace.


Crystal Hinman said…
I have mentioned to our neuro so many times that a rectal med seems so terrible to have to use at that time. Why not make a form like he epinpens Moses has for his allergies? Glad O is home safe and sound. So sorry that every stage brings more delicate medical issues. You and your husband are love warriors.
Angela said…
In the UK we have a medication called Buccal Midazolam which is used for the same purpose as Diastat but given into the side of the mouth (Bucall cavity), so much more dignified and easier, particularly if a person loses control of certain functions during a seizure or is in wheelchair. Almost all the people I know now have this medication rather than rectal meds
ashleytiberi said…
I can't imagine the fright in watching Oliver have a seizure for that long and with such force. And to know that it leads further down a path that you so much don't want to walk. My heart is with your family.

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