Bringing in the cardiologists

EEG hair

Our "good" streak on the anti-seizure meds Topamax and Depakote came to a screaming halt on April 29th. Out of no where- Elin had a seizure. She wasn't sick, didn't have a fever and gave me no indication she was about to have one. This of course is terribly frightening in itself, however the color of her skin was even more terrifying. Since this episode- Elin has had many more seizures. We have been in SCH ER three times and admitted to the ICU twice. Life has not been a bowl of cherries lately.
The good news if there is any is that Elin has not needed rescue meds to come out of her seizures this time around. They are lasting between 1-4 minutes and as soon as she STARTS BREATHING again, they seem to subside. Yes, yes, 1-4 minutes of not breathing. I have given my baby girl rescue breaths more times then I care to count and I could go the rest of my life never having to do that again. The medics and fire department have been frequenting our home and we have taken two rides in the aid car to SCH in the last month.
So why are they so different? No one knows. That's reassuring isn't it?

"Mean Pete" last day on the job

She had seizures in the hospital while she was hooked up to the monitors so the ER and ICU staff can see just how scary they are. I go in with her, saying she "turns blue" and they are like- ya ya OK. Then she has a seizure and desats (oxygen desaturation = meaning all the oxygen leaves her blood) within 30 seconds. They can watch it on the monitor and see it in her coloring. Both times this has happened they are frantically trying to bag her and get oxygen into her and they ask, "is this what she does at home?" And I answer- yes. Now they understand what I mean by blue.

Apparently this is unusual. It isn't unusual for a person to stop breathing or hold their breath when seizing but desaturating at that "profound" a rate is not natural. Just imagine holding your breath for 1 minute- most of us don't even lose the pink in our cheeks. So the neurology team turned to the cardiologists to help explain the mystery. The monitors in the hospital measure her heart rate while she has had these episodes and she continues to have a pulse so her heart is beating.... something else is going on.

During our most recent hospital stay we did an EKG and a heart echo, both of which (thankfully) yielded a perfectly healthy little heart. The terms "pace maker" and "pulmonary hypertension" had been thrown around prior to getting these test results back so I was very happy to learn she had a healthy heart.
She had her first breakthrough seizure 2 days after we returned from CA. We changed her meds and she seemed super irritable and her sleep was terrible. While in the hospital she did an EEG which resulted in nothing abnormal. Just under 3 weeks later she had her second bout of breakthrough seizures. This time was very similar to the last but her coloring was beyond horrible and I thought she wasn't going to come back to me during one of my rescue attempts.

So here we are again. Home with a perfectly happy, healthy little girl, until she stops breathing again. We are getting a bit more anxious to find some better ways to care for her in light of our recent scares. I can't keep breathing into my child in hope of her returning to life. This just isn't fair.