Epilepsy

While we wish our Spring Break was filled with sun and sand, we, instead, got to make a trip--once again--to Ann Arbor. 

Sure, it’s not exactly a vacation hotspot, but it was a very informative trip.

This will be a very short post, as we’re continuing to process Kai’s epilepsy diagnosis…a new diagnosis to add to an ever-expanding list of medical issues. True, our “normal” has grown to include cardiac, pulmonary, GI, endocrine, and renal complications, but watching him have seizures has been incredibly demanding. This normal needs to sink in yet.

However, to pass along an update, we learned today that the specific type of seizure that Kai is having is called a complex partial seizure. Specifically, his are originating in the left temporal lobe. Originally, it was suspected that he was having simple partial seizures. Both types are focal seizures, meaning they occur in one region of the brain. Complex partial, however, start in one small area of the temporal lobe, but quickly involve other areas of the brain.

Here are just some quick facts about Kai’s complex partial seizures:

*all seizures are caused by abnormal electrical disturbances in the brain.

*He typically has an aura before having a seizure. This is sort of a “warning” before the actual seizure.

*He has had abnormal muscle contractions and eye movement. He also has automatisms, or automatic movements.

*Kai has also had some abnormal sensations/tingling.

*Along with this, there is impaired responsiveness.

*Unfortunately, the seizures have affected his heart rate. This, of course, puts added stress on his already complicated heart.

*The seizures are typically lasing between 1-2 minutes.

*He has a clear postictal state. He is generally confused and agitated immediately following the seizure. He has fatigue and exhaustion that lasts for hours.

As we continue to work with geneticists to determine if there is an underlying syndrome caused by a chromosome deletion or addition, Kai will soon be having an MRI to determine if his seizures are related to a congenital brain defect. There is no indication that there is a tumor, but rather a defect that he was born with. This will give us more information about how his funky little body is functioning.

As we wait for his MRI and genetic test results to come back, we’ll keep working to control and manage Kai’s seizures with meds (an adjustment is probably coming next week)…and working on understanding our newest normal!