The Anniversary

Hopefully, you've read the backstory about Lennon's diagnosis.  If not, look for the Valentine's Day entry on the Diagnosis page.

On February 13th (you know, one day before the anniversary of his first seizure) Lennon woke up to facial twitching.  I took him to the ER and started a journey eerily similar to our first stay at Wesley Childrens Hospital. The exception is that the seizures stopped prior to our arrival in Wichita, our first EEG was clear, and we were back on the PEDS floor and out of the PICU the next day.  We were all set to go home the morning of the 15th, but he awoke to facial twitching again.  Back to the PICU where we stayed for 4 more days.  He was released the night of the 18th.

After the MRI, we learned that Lennon suffered another stroke episode about 2-3 weeks prior to this trip.  This stroke-episode went unnoticed.  There were no seizures. There was no hospital stay. There was a stroke and we couldn't see it, treat it, nothing.  The only sign we saw was the change in his willingness to crawl. How much longer would this kind of damage gone on if we hadn't brought him in? 

Our new concern is that he is showing seizure behaviors when he falls asleep and wakes up.  How are we going to know if he is seizing while I'm sleeping?  We don't hear him. His facial twitches aren't loud.  How are we going to know if he's had a stroke episode if we don't see it?  We can buy baby monitors that have video and review them each morning, I suppose... we can sleep in shifts... we can pray that his new combination of medications povides the reinforcement he needs.

Before we left, we spoke to both of our specialist doctors. Dr. Beltran, our geneticist said that Lennon is unique,  which softer way of saying unknown. Dr. Shah, our neurologist struggled to reassure me when I asked how to handle potential seizures during sleep.  He completely understood our concerns about discerning what is or isn't seizure activity.  It was hard enough when we were just looking at hands and feet, now we are throwing in atypical facial movements as possible myoclonus rather than myoclonic seizures.  This is overwhelming.

Dr. Beltran is working with the clinic at Colorado Childrens Hospital. They have a dedicated mitochondrial clinic and also treated a CARS2 patient before.  We hope to schedule an appointment with them after she speaks to them, since she's already planned to give us a referral.  We are hoping that since they hae experience with CARS2, they may have additional treatment options, including clinical trials.

For now, we are just happy to be together at home.