Children's Hospital - St. Paul, MN

Hello, Everyone! We have been in the Children's Hospital since Wednesday morning. I have to share that this place is amazing! Everything is such a vast difference in comparison to the care we have received previously. Even the ease at getting the sensors glued to his head to the way they wrap him up and the pack that they use. Instead of being confined to a tiny room on a short length of cord he's in a large room and is allowed to go on a battery pack to play out in a central area with other kids. The nursing staff is nice. The Neurologist/Epileptologist comes around 2-3 times a day and is informative, friendly and helpful.

They started to ween Abe off his Klonopin the first day to try and instigate a seizure. So far he hasnt had an "episode" but his EEG shows multiple bursts of epileptiforms throughout the day which is indicative of seizure activity. He had been very lethargic and sleeping A LOT which is very much not Abe. He has been very cuddly though so I'll take the cuddles!

The plan seems to be to add in Keppra, an anti-convulsant and slowly take him off the Klonopin once we get back home. Due to withdrawal issues that has to happen slowly and with his sleeping issues we may keep a night time dose but aren't sure in that yet!

So, for now we just keep waiting! Thanks again for being amazing and for caring about Abe. 

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