No, you’ll just have to wait
She said, “love don’t come easy
It’s a game of give and take”
Waiting is what we’ve been doing and a lot of it. We made it back home from Texas safely and reunited M&F fun factory. They were VERY happy to see each other. Frankie was very happy to have her bestie back and has been rocking some cowgirl boots and a hat like it’s her job.
We’ve settled back into our regular (for us) groove. The team at Texas Children’s sent us home with Max on a bridge to try to calm down the spike in seizures we experienced when we were there in hopes of us getting home and keeping him stable. It did the job and we were able to avoid him having a status seizure and using his nasal rescues. Once we got home, we touched base with our local epileptologist and weaned off the bridge and figured out an adjusted Seizure Action Plan. He was still having clustering seizures where he would come in and out of lucidity. He isn’t to the degree of needing his heavier hitting rescue med, but also not at his baseline. For those, we were to watch the clock and at the 10 minute mark, and give him a dissolvable tablet of clonazepam under his tongue. We experienced an uptick in those clustering seizures, specifically in the morning as he was waking or getting ready for school so we reached back out to our local doctor to troubleshoot. She increased one of Max’s medications in hopes that it would calm things down a bit while the Texas team combs through the COPIOUS data (read LOTS OF SEIZURES) Max provided during his stay. *Knock on Wood* That increase seems to be helping a bit and Max was able to make it through some partial and then full school days. He still gets fatigued pretty easily as his body is adjusting to the medication increase. We’re hoping this holds until we can hear the results and plan from the Texas team.
We have definitely been “here” before but it is a little harder this time. I think it’s because Texas was our big get. It took a long time to make it there. We finally did and now we have to wait more. We want them to be as thorough as possible, but it’s still tough to be patient. It’s also a struggle because we know that Max has intractable epilepsy. He is drug resistant. No medications ever REALLY work. We seem to experience a brief honeymoon period and then lose the gains we had. Sometimes we experience a little lull where things seem to be ok and then just as quickly, they are anything but. It’s a rollercoaster and a nauseating and heartbreaking one to be on.
The service coordinator at Texas Children’s did call us on the 8th to check in and let us know that the part of the team of doctors who is the epileptologist dedicated to RNS would be presenting this past week. We are hoping that the length of time is indicative that they are being very thorough and thoughtful in their conferencing over Max’s very complicated case. We are able to see some data thanks to myChart. That has been a lot to sift through. Matt and I have always read everything we can get our hands on about TSC, epilepsy, and the current research being done ever since Max’s diagnosis. So we can definitely appreciate the scientific aspect of this and how detailed the information is that the team is poring over. The report from Max’s vEEG is a lot to take in. Dr. Coorg wasn’t exaggerating when she said that Max was giving her a lot of data to look at. They identified 5 different seizure presentations that Max was having. To give an example, here is how one type is described in his report:
A. Focal aware seizures with clinical correlate as a subtle chin drop (wakefulness)
– more than 51 within the first 24 hours; 1-2 seconds in duration
– EEG non-localized, burst of high voltage irregular generalized spike and wave discharge with shifting voltage maximum
– event types: (Event #7, #42, 45; innumerable events not clinically detected but visible on video)
The report goes on to describe the other 4 presentations, correlates them with the EEG reading and identifies good examples of those seizure presentations in the videos. While Matt and I had suspected Max was having subclinical seizures (symptoms of the seizure are not outwardly noticeable), it was hard to see in black & white that Max had over 100 seizures in the first 24 hours of monitoring. Some of these seizures are only seconds long, but the fact is that he is seizing pretty constantly. He is such an incredible kid even with all this going on. It makes us even more determined to find a better solution for him. The amount of detail in the report is incredible and makes us hopeful that the team will have the best picture of what has been going on and a plan going forward to bring Max some seizure relief and stability. It has been tough for a long time, and so have we, but now we’re ready for a break from living in survival mode. We know we’re in good hands and we’re hoping to hear something this coming week. Until then..
“You can’t hurry love
No, you’ll just have to wait
Just trust in the good time
No matter how long it takes..”
