The First Trip to Mayo Clinic and the Real Diagnosis

Tom and Chase at the Mayo Building in Rochester

Anna entertaining Chase

The week of August 26, 2013 we drove the 6 hours to Rochester and although we were very worried about Chase, we didn't have many expectations out of the trip other than they would just tell us Chase was on the wrong medication and hopefully find the right one.  Chase had an EEG the first day and we met with the Neurologists for almost 3 hours that afternoon, just answering questions.  They did not give us any answers at that time so we were still pretty calm about everything.  The only thing they did tell us was that each of the head drops was a seizure, so he was actually having 50-100 seizures a day, which was not how we had been looking at it as we had though each cluster was one seizure.  They scheduled an MRI and spinal tap (Lumbar Puncture) under anesthesia the next day, and the following day he was admitted to the Epilepsy Monitoring unit at St. Mary’s Hospital at Mayo for 2 days.  The worst part of that was gluing on the long-term EEG leads for the hospital monitoring, which took hours while Chase screamed.  His head was wrapped to protect the leads and he had a little “backpack” of wires attached to him the entire time.  We had to remain in the small hospital room under video surveillance for the duration of the stay, which was pretty miserable.  

DIAGNOSIS

Right before being discharged from the hospital the team of neurologists came in to give us news that at first confused us.  They told us Chase’s diagnosis was Infantile Spasms (IS) or West Syndrome, which did not sound so bad at first.  We didn't understand why they had such a large team of doctors surrounding us and talking to us like they had to tell us someone died.  They were reluctant to explain what that meant but insisted that we need to get the seizures to stop as soon as possible and jumped into the options for medication, either Sabril (Vigabatrim) or prednisone (ACTH).  

They strongly suggested trying the Sabril (Vigabatrim) first, although there were serious side effects such as permanent vision damage.  We were still confused and looked at them like they were crazy- why would we risk his eyesight for this medication?  They just told us the benefits greatly outweighed the risks, so we trusted them and agreed.  They handed us pamphlets of information and told us to read them and they would return in a bit to answer any questions.  They said not to read a lot online because there was a lot of grim information out there. Unfortunately, in the haste of packing up the hospital room and dealing with Anna (age 4) bossing the nurses around and bouncing off the walls, we didn't really read the information.  We had read all about seizures before.  They scheduled our trip back in 2 weeks for another EEG and we still truly did not understand why we had to drive all the way back so soon.  Only on the way out the door did we read the information and it hit us like a train. 

Infantile Spams is a very rare and catastrophic form of epilepsy that, if left uncontrolled, can destroy the brain and lead to mental retardation or even death.  The statistics were grim- only 10-20% of children with IS had mental brain function later in life.  Even if controlled, most kids developed other types of debilitating seizures later in life.  The more we read, the worse we felt.  In an instant our dreams of Chase’s bright future changed.  We suddenly had a million questions for the doctors.  

During the next few weeks, Tom and I cried A LOT, freaked out on each other many times, did not sleep, and became very angry - especially with God.  We did not understand why He would do this to an innocent child.  We begged Him to do something terrible to us instead!  We were not going to church and were really confused about our faith.