Off the medication.

We took Emma off the medication. It was interrupting her sleep, she woke up for a couple of hours in the middle of the night for five nights in a row. She was exhibiting even more noticeable tremors, specifically when tired and when startled. 

She has been sleeping so much better since we took her off the medicine. Back to baseline! At this point, we can say she is not having seizures. But that begs the question... what is she having, and why are they so seizure-like? One answer provides more questions!

Yesterday we got her Fragile X results back, and the good news is that they were negative, so we don't have to worry about that! One worry off our mind. 

We are still in discussion with Emma's Neurologist and Geneticist to decide whether or not to pursue whole exome sequencing. The problem is, it's the kind of test that will throw up concerns that we wouldn't necessarily know otherwise -- for example the BRCA gene (Breast Cancer) -- so we may find a host of things that will add extra worries without being at all helpful right now. The doctors have to weigh up the additional stress and concern over the unknown possibility of finding something relevant. That and the cost. This is a test that costs into the $10,000 range, so they really only undertake it when there is a clear need.

So for now we wait. 

We'll keep you posted!

Katy and Adam x