Little Pooplet's had an eventful last month and a half for being an overall very healthy 8 month old. Some friends and family have heard part of the story here or there depending on which point in the process you spoke with us but overall there hasn't really been much to tell until now because we didn't know much.
It began on December 14, a Sunday morning, over in Gatlinburg, TN, where we had taken a short weekend trip. Pooplet had just woken up and I was feeding her when she lost eye contact with me and became less responsive, then proceeded to have 2 short seizures. We called an ambulance and ended up in the ER in Pigeon Forge. By then, she had come to but was very sleepy and confused by everything that was going on. Vitals were normal in the ER. No fever. She had labs drawn, xrays and a CT scan. Nothing.
When we got home, we followed up with neurology at Vanderbilt. The big question was: was it an isolated seizure or was there some cardiac event that caused it? She got an EEG, normal.
Now, thinking back, she had had 2 episodes prior to the one on December 14 with no seizure, but where she became somewhat floppy for seconds to minutes. We shared this with the neurologist, who said they could very well be syncope, or fainting, spells of some kind, which can be a periodical and benign occurance in some kids. We agreed to do nothing and observe unless it happened again.
It did happen again, about a week later. Got an EKG to see if there might be something wrong with the electrical conduction of her heart that could be giving her an arrhythmia. Instead, the EKG showed interference (Tony said she was really wiggly) and possible findings consistent with heart enlargement, which prompted an appointment with cardiology this week.
Well, before we could get to that, there had been one more thing going on in the background with a very gradual onset, becoming obvious at around the end of December. Suddenly and with no apparent triggers, Isabella would drop her head to the left and turn it inward, then go back to normal. Well this had become much more frequent during the time I was gone interviewing (I was gone January 5 - 26) and was happening many times each night by the time I got home. I was very worried. My experience with one particular patient, a baby, whose head dropped over to one side (though he could not straighten it like Isabella could), who turned out to have a tumor at the back of his brain, did not help. I talked to the neurologist again and this time sent him a youtube video I'd taken of Isabella's head drop. He wanted to make sure there was no associated seizure activity and was also very concerned, so we went into the hospital last night to the inpatient epilepsy monitoring unit so she could have a continuous EEG overnight and be videotaped.
Well, she did do it many times and it was witnessed and thankfully, there was no associated seizure activity. Also, in lieu of this week's scheduled cardiology appointment, Isabella also got an echocardiogram (ultrasound of the structure and function of the heart) in order to rule out a cardiac cause of her fainting spells. That too was normal.
I wish I had more time to write but I really need to sleep (Vanderbilt interview tomorrow!). So I'll skip to the end. At this point, we're probably 75% confident that she has something called benign paroxysmal torticollis of infancy (BPTI), something she'll most likely grow out of. That explains her head drop. We're still not entirely sure about her fainting spells but at this point, what really matters is that we've ruled out the serious causes.
We're so so thankful that our Pooplet is healthy!
More on BPTI later. Or Google it. It's fairly rare and as such, the residents asked me to present her during a morning conference. Hopefully I'll be around when it's presented. What a week! Off to sleep.
Thanks for all your thoughts and prayers!