These are the days it never rains but it pours

Since the last update, we’ve had a lot of ups and downs. I wouldn’t necessarily say UP ups, but middling ups. We were able to get Max stable and back to his baseline. We ended up having to make the decision to switch schools so he could be at a school with a nurse. It was hard on him because he had to wait to start until his seizures were settled and we’d met with an trained everyone so he had to start 3 weeks late. In typical Max fashion, he adjusted and handled switching to the honors/ advanced program like a champ. 

We had another RNS adjustment about 6 weeks ago and things seemed to be settling into an ok groove. Then in the last week or so, Matt and I noticed an uptick in Max’s blips (smaller seizures where he stays lucid). We reached out to the team to let them know what we were seeing. As the week progressed, we suddenly started getting more and more intense seizures. We have been in regular communication with the doctor. I expressed my growing concern that this was all looking just like it did back in July/ August when we had uncontrolled clustering.  Max had a cluster seizure at school and EMS was called. We relayed this to the doctor. She started Max on a bridge (stronger medication for a few days to wait while medication adjustments take effect).  We continued having strong seizures each day and were back to needing rescue medication every day. They added an additional bridge. I expressed continued concern that this was snowballing and his seizures were looking worse. She added a 3rd bridge. This is starting to sound like too many bridges right?  

Then we hit the weekend and the seizures continued. In addition to the script for our 3rd bridge being written wrong so that we couldn’t get it properly filled, we now were entering the weekend where it’s impossible to reach anybody. We spoke to the on-call neuro and they tried to help us troubleshoot. We asked for protocol for when to bring Max in to get admitted. She said if we needed rescues again or had  more or worsening clusters we should come in. Max’s case and situation is complex. Local hospitals don’t know what to do with him which is why we go to a Level 4 epilepsy center. We try very hard to be proactive and never get ourselves into time sensitive situations because we do not live within close proximity of the hospital.  With seizures, literally every second counts.

Halloween arrived. We had finally made it 24 hours without rescues. Max was excited to dress as Harry Potter and get to see some friends and trick or treat with Frankie. He’s been home and doing remote learning for school while we try to get his seizures calmed down. Epilepsy can be very isolating. Epilepsy in a pandemic when you just started at a new school is incredibly isolating. I’ve said it once, and I will say it again: Max is the toughest kid I know. 

We got the crew dressed up and went to the trunk or treat at Max’s school. We headed home to relax before trick or treating with friends. Max is on steroids and a bunch of other things right now as bridges that have all been making his emotions and moods go up and down intensely. He needed to rest for a little bit and he and Matt would join Frankie and me at our friends’ house.

We were walking back to the house to meet up with Matt and Max. Matt texted me that Max was having a long seizure. I took off and met him at the car. Max was clustering badly. He came back to baseline a little. He was able to tell me it was Halloween and our address then he went right back into a seizure. These are hard to see. His eyes roll back in his head, his right arm stiffens and comes up, and he doesn’t respond at all. We timed and watched him. It got to the point he needed rescues. We gave him rescues and watched the clock. We have a 15 minute window where he may have aftershocks while his rescues kick in. During that time we tried to ask him questions and gauge his lucidity and tried to figure out a game plan for what to do if he didn’t stop seizing. Time was up.

My girlfriend kept Frankie for me so she was able to stay and play until my mom could pick her up. It makes me so incredibly sad that this is such a typical part of her life that she takes it in stride. Max and Frankie are both so incredibly resilient. I just wish they didn’t have to be.

Matt and I drove Max to St. Joe’s to get Max admitted. We called Lurie’s en route and left  a message for the on call neuro- knowing we’d likely need an ambulance transport. Max had continued clustering the entire ride to St. Joe’s. They greenlighted us back right away and didn’t have rooms so they put us in a cardiac unit because they didn’t like his coloring or the fact that he was continuing to seize. They put in an IV and he SCREAMED. I was so grateful to have a reaction out of him that I teared up and told him, “good job buddy, God, I’m glad to see you”. The nurse was right there with me. 

Matt listed off the laundry list of meds. I gave a medical history and his RNS. The doctor said he’d likely have to transfer us because we were beyond their scope. They gave Max Ativan and he kept seizing. They gave him more Ativan. The doctor spoke to Lurie’s and they set up transport. I drove home and packed bags and let Mabel out and got to see my Frankie girl before she went to Nana’s. 

The Lurie’s Uber arrived for Matt and Max and I drove down to meet them. Max was SAD, tired, and hungry. I tracked down some Panera mac and cheese and a hot chocolate. He got  hooked up to a video EEG, and all settled in to our least favorite timeshare.

He’s had some more Ativan, more seizures, and now Fosphenytoin. I am watching him and his EEG waves and hoping things settle down. Matt is home for the night and we’ll do our standard changing of the guard as needed until we get our little dude some answers. 

Max is still  seeing his epileptologist and we are seeking opinions at Comer and Cincinnati Children’s Hospital.