The past month has been all about trial and error - or maybe I should say trial by fire. Since my last post, Josie has had a handful of seizures, large and small. Each new seizure leads to an increase in her medicine.
I'm writing this on June 10th at 8 a.m. just two hours after I jumped out of bed when I heard her "seizure scream." Parents with kids who have seizures know that scream - unmistakably. It's not a screech, it's deep and kind of animalistic. And it typically happens once the seizure has already started.
We are starting to feel more comfortable handling Josie's seizures on our own without calling 911. We have an oxygen tank that we bring everywhere we go with her. And we have two types of emergency meds. The heavy artillery is the diazepam syringe that we administer in her butt if it's a really bad seizure, and the lighter, but so far effective solution, is a dissolvable Klonopin. There are times when we need both.
I won't go through every event, but the most important one is certainly a story to tell.
On May 20th I took Josie to see Dr. Maytal, our neurologist, for a follow-up visit. In the waiting room she was laughing away. They called us in and weighed/measured her and then had us wait in a room for the doctor.
Josie started to have an eye attack and then started to tense a little. Oh no. I called for someone to please get Dr. Maytal right away. When he came to the room, Josie was having a full-blown seizure - prolonged stiffening, eyes widening, and she started turning blue/gray. Dr. Maytal was observing what was happening while I was pretty much freaking out saying, "do something!"
I had the diazepam on me and he called in his nurse and asked her to teach me how to use it. He made sure we waited for her to be seizing for at least three minutes before administering it. That felt like hours. For the first time I saw the "seizure scream" in front of me. It's like she breaks from the seizure to yell in absolute terror and then she started convulsing, which I never saw before. The nurse gave the diazepam and gave her oxygen.
Josie started to settle down about one minute later. They called 911 from Cohen's Children's Hospital, which happens to be next door. We took the ambulance over (about a 1 minute ride), back to the ER, ironically in the same room we were just in a few weeks earlier. They got the video EEG probes on Josie's cute little head again and we stayed the night. Yes, I had another Dole pineapple cup.
I couldn't have asked for Josie to have this seizure in a better place. After such a long time of several neurologists telling us they are not seizures, it was like Josie was saying, "dude, this is how bad it is." There is absolutely no question now. Now, it's a matter of getting her meds right and keeping her safe.
She is on Topomax 15 mg 2x/day and Depokote 3x day (1.5, 1.5, 2 mg).
She's also taking Carnitine to protect her liver from the Depokote, and at night we've been giving her Melatonin, which is helping her sleep, well, with the help of the heavy meds.
As I said, she had another seizure this morning, so we're not there yet.
Separately, we recently met with Dr. Djukis, the Neurologist/Geneticist who runs the Rett Center at Montefiore Hospital in the Bronx. Although Josie doesn't have Rett Syndrome, FOXG1 has many similarities, and Dr. Djukis sees some Fox kids. It was an amazing visit. She basically went through every touch-point of Josie's life and made sure we are doing everything we can for her. What a dream appointment! More to come on our progress there.
*Over and Over and Over is another song by Holy Ghost! That band sure gets a lot of play on this blog.