Baby brain

Back at Children's Hospital again...waiting for the neurology appointment

No neurologist can cure my baby brain, but Addison’s baby brain is another story entirely. While our baby girl was fighting for her life in the ICU, she started having what looked just like seizures. It was scary to see her arm shaking uncontrollably and even scarier when neurology was called in to consult. Medical matters of the brain are just a lot of gray, as we quickly found out. Unlike the simple black and white diagnosis of ‘heart doesn’t work’, brain issues never seem to have a clear definition, especially with babies.

More waiting...but we've made it to a clinic room.

Subsequent EEGs showed the jerky arm movements were NOT seizures, but Addison did have unusual brain activity not associated with any physical movements. These seizures are known as subclinical seizures. Along with all the other drugs, our little girl was put on anti-seizure medication as a precaution. Neurologists assured us the medication was very well tolerated amongst babies and children, and has actually become the drug of choice for seizure prevention and treatment.

Getting checked out by the neurology fellow

Standard protocol is minimum dosage of 3 months on Keppra. So finally this week, Addison had her follow-up visit with the neurologist. The good news is her coconut (as one of our favourite ICU nurses called Addison’s brain) checks out just fine. Her EEG from a couple of weeks ago came back clear. She hasn’t exhibited any unusual seizure-like activity. Her development is continually progressing. Whew!! That is a huge relief for Aaron and I.

Addison's coconut is a good size!

Of course, nothing is ever black and white as I mentioned earlier. This means Addison will stay on Keppra for another couple of months until we start to wean her off…an 8 week long process. She won’t have to go back to see the neurologist for another 6 months to a year. All of that comes to a grinding halt if we see any seizure signs. While the brain ultrasounds in ICU showed no evidence of major clots, bleeding or damage, it is not a very detailed diagnostic tool. Small scars or lesions can’t be seen on an ultrasound. So down the road, Addison may have an MRI. But we are remaining optimistic. As we have learned from a few different neurologists, the biggest indicators of brain health are the actions and reactions of the patient. We don’t need a medical expert to tell us Addison is learning and growing every single day.

All this poking and prodding is just way too exhausting for a little princess (and her daddy)

Love,

Elaine, Aaron and Addison

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