My daughter was diagnosed with epilepsy yesterday. I was hoping someone may have some resources for specifically for kids… books, social stories, etc. She reads at a higher age level, and loves to read. She tends to enjoy graphic novels more, but loves all books.
Our journey here:
A few months ago she had a sudden increase in anxiety and OCD (she’s always been anxious and had OCD tendencies), and was having what we termed as “episodes” until we finally confirmed they were seizures. They seemed related to anxiety, and she would call them “gross out” episodes - she thought of something gross and it made her have an episode. In hindsight, we now think this is an aura. Usually less than a minute, she smacks her lips, and has repetitive arm motions, and wouldn’t respond to us. When she comes out she is confused, and has trouble finding words - when she usually has the vocabulary of a college English major.
We went to her pediatrician, showed him video of an episode, and talked to him about the anxiety. We started Zoloft, and it seemed to help a little, but not enough. He also ordered an EEG, and we got her into therapy. We had the EEG and when it came back they said there was no epileptic activity, but there was slowing in the left frontal lobe. He referred us to neurology at Children’s Hospital, and said that we should make an appointment but it didn’t seem to be an “emergency”. They initially couldn’t get us in until June, but we went on a wait list, and said we’d take virtual, just to be able to talk to the neurologist. Around this time they started happening in her sleep too. They were able to see us much faster this way. The doctor ordered a 48 hour EEG and an MRI and scheduled us for a follow up in the end of May, so we had time to get them done.
We had the EEG done Tuesday/Wednesday, and returned it Thursday morning. She didn’t sleep well either night, and Thursday was probably her worst anxiety day that we’ve seen. She’s been telling us that everything feels weird, and nothing feels the same. By 7:45am yesterday the doctor called. I missed the call, but was able to see on MyChart that the EEG was read and was suggestive of epileptic seizures. The doctor scheduled us for another virtual call by 11am, and we had a plan in place. She started Trileptal last night, and we’ll titrate up next Friday evening. We have Valtoco for a rescue med.
As soon as she found out these were seizures, and also very likely the cause of the increased anxiety, it was like a weight had been lifted from her. Today was the best day she’s had in months, and she was back to her incredible, brilliant, funny, sarcastic self. My heart is lighter than it has been in months.
Any pointers to a mom that has experience working with children who have seizures (direct care, but it’s been over 20 years) but never experienced with my own is greatly appreciated. We’re just starting our path, and I want to make sure we’re doing everything we can to help her.
Thank you!