Diagnosis

In May of 2012, our lives changed forever and we didn't even know it.

Elias, our 2 year old son, was playing in his sandbox while I washed dishes. After about 10 minutes, Elias came in the door and laid on the floor.  I picked him up and he immediately fell asleep in my arms.  He had never done this before.  I took his temperature, which was normal.  I laid him on my bed and checked his breathing, which was also normal.

I decided that he must have gotten really hot and just didn't feel well.  Looking back on it, I feel ridiculous.  I should have known.  But after a 30 minute nap, he was back to himself, so I told myself everything was fine.

Even if I had called the Doctor, all she would have said was that since I had not actually seen anything suspicious (meaning convulsing), there would be nothing they could do. That seizure isn't even included in his medical chart.

Then came June 7th.  We took Elias to a local splash park to cool off.  We had a wonderful time and decided to hit up a burger joint for dinner to extend the fun.  While eating fries, Elias slumped back in his chair.  I touched his arm to see if perhaps he was just playing, as he often does.  He nearly fell from his chair from my light touch.  Immediately I knew what was going on and immediately knew what had happened in May.  My husband and I watched helplessly as our son had what we would later discover to be a myoclonic seizure.

When the seizure was over, he appeared normal except for being very sleepy.  We put him in the car and took him home.  We checked his temperature, which was normal.  We decided that since the Doctor's office was closed and that the matter did not seem urgent, we would wait until the next day to attend to the matter.

We took Elias to the Doctor's office the next day, only to receive zero information and a referral to a neurologist at Children's hospital.  We called and set up an appointment as soon as they had an opening.

The neurologist at this first appointment was very kind. The kind of doctor you feel will actually give you the time of day. She told us that this could likely be a singular event but that she wanted to order an EEG just to check out what his brain was doing. EEG's cause spikes in the brain that show those who can read the results if there is seizure activity on the brain. 

We scheduled ours for the coming month, July 1st. We were instructed to deprive him of sleep, which was surprisingly easy save for the 40 minute car ride to the North Campus of Children's Hospital Denver. Although a little grumpy, Elias was a champ. After watching several minutes of blinking lights, he easily fell asleep as I snuggled him (which is exactly what he was supposed to do)...I even drifted off for a few minutes. The hardest part of the whole thing was getting the "noodles" on and off of his head. They have to stick them to your head with a glue like paste and it can be uncomfortable, I hear.


Hours after his EEG, which we would later learn showed activity consistent with epilepsy, he had another myoclonic seizure.  The neurologist recommended that we start him on a common anti seizure medication called Keppra, which we did.

His EEG

After his MRI

After several more neurology visits, seizures, an ER visit and an MRI, Elias started having a different type of seizure.  Our regular neurologist was in a horrible biking accident and the neurologist they reassigned us to had just gone on an extended vacation.  I called Children's almost daily trying to get the on call doctors to understand.  No one would listen.  After two agonizing weeks, our neurologist, Dr. B, came back from vacation and took the time to call.  He explained that from the reports, it appeared that Elias had a rare form of Epilepsy, affecting less than 1% of all people with epilepsy. That was August 21st, my 25th birthday.