“I’ve lost count of the number of times my 9-year-old daughter, Alyssa, has been in the hospital. She has a genetic disorder called PCDH19 epilepsy that causes her to have seizure clusters as well as cognitive and behavior issues. (A seizure cluster means several seizures back to back, often not stopping without medical intervention.)
When Alyssa was younger, we had months where we spent more time in the hospital than out because her seizures were so out of control.
Eventually things calmed down and we started to hope Alyssa would be one of the lucky ones with this disorder who outgrow their seizures. In fact, she went about two years without having any seizures and we were starting to wean off some medications when they came back a few months ago.
It was devastating to say the least. At first the seizures were small enough that we could manage them at home with extra medications, but a few weeks ago she had a seizure in her classroom that lasted 7 minutes. The paramedics were able to get it stopped with emergency medications, so I took her home to rest and watch ‘Wonder Woman.’ Unfortunately, she had another seizure, which meant we had to make the hour drive to Cook Children’s hospital in Ft. Worth, Texas, where she continued to seize.
We’re lucky because Cooks has one of the top-rated epilepsy programs in the country and they take excellent care of Alyssa. It was still an emotional roller coaster to be back in a hospital room though. In my head I was right back at the beginning when they first told us the seizures might kill my daughter and I was terrified because I knew it might be the first of many stays based on how her disorder tends to go. Lots of girls start having regular seizure clusters as they get near puberty and they can cause major challenges with aggression and cognitive abilities.
Alyssa had a pretty rough night but started to pull out by the next morning. When the nurse did her rounds and checked on us, she asked if we needed anything. Alyssa popped up and said she needed her nails done. I started laughing at the request and breathed a sigh of relief that she was probably out of the woods if she was coherent enough to request a manicure. I never imagined that they would actually do it, but a little while later, a child life specialist showed up at the door with sparkly polish.
The manicure absolutely made Alyssa’s day and was a bright spot in an otherwise hard day. It also meant the world to me to see her being her normal self even with EEG leads still glued to her head. When you’re parenting a child with PCDH19, sometimes the disorder can seem bigger than the kid.
There is so much to be scared about that I have to stop myself from being consumed with the prognosis. It was a relief to see the little girl side of her being nourished while they worked to get her brain calmed down. The nurse and child life specialist who cared about Alyssa’s nails that day made her light up and helped me breathe a little easier. I can’t say ‘thank you’ enough for that.”
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