Remind me again, why are we doing this?

Some of you may have gotten my original email, when we decided to pursue this course, so you know why we are doing this. Others, who are new to the blog or didn't get that original email may be wondering, in the words of the Talking Heads "how did I get here?".

Lauren has had a seizure disorder (Epilepsy), since she was 7 years old. At first they thought they were night tremors or sleep walking. An MRI showed a dysplasia (abnormal growth) on her brain, which we always assumed was the source of the seizures. They started her on anti-seizure medications which helped. As a growing child, it was necessary to increase her dosage regularly until it became ineffective or the side effects became intolerable. As a result we were changing medications on a regular basis. Some would last a year, others less. Eventually she ended up taking multiple medications. Tapering on and off of different meds, trying different combinations. At age 14 we readmitted her to CHoP where they redid the MRI (no change), weaned her off her meds and observed. To be honest, I am not sure what we achieved with that admission, but we were glad to have other neurologists take a look at her.

We were frustrated at that point as it seemed we were just throwing drugs at the problem to see what stuck. We had a second opinion in DC last summer and they confirmed that it was not endocrinology or metabolics and they recommended surgery. Back in Philadlephia, we pursued pre surgical testing including more neuro-psych testing, level 3 MRIs, MEG (MRI + EEG) and PET scans. None of them were conclusive, so the next option was to do an EEG directly on the brain.

And here we are, waiting for seizures. Same as it ever was.