Abnormal EEG Results

July 5th: Chase had the MRI done under anesthesia, and this came back completely normal.  The pediatrician who ordered it seemed to report it with an “I told you so” attitude.  But I knew they would find something on the EEG test which was done the following week on July 10th and the days of waiting for the results seemed to take forever, as Chase continued to regress.  The test was being sent to the Minnesota Epilepsy Group in Minneapolis to be read, and I was not hearing from the pediatrician who was supposed to relay the results.  I called to find out the status but of course the doctor was out on vacation that week . I begged the nurse to have another doctor look at the report and call me back since it had been a full week and Chase was not doing well at all and he even looked just ill. Later that day, we received the call that would send us into a panic.  

Video of Chase's Infantile Spasms in July

Although Chase did not have a seizure during the 2-hour EEG, the test results were very abnormal, showing he had just had or was about to have a seizure.  Only then did he get moved up on the list to see the Neurologist, but it would still be a few weeks.  The doctor that called me back (now the ONLY pediatrician Chase sees) understood my frustrations as a mother herself, and she quickly worked with the Neurology department to get Chase started on a medication in the meantime, Keppra.  She was the first person to show any compassion and take action.  Chase started on a very low dose, and we were very excited at first when after a few days he seemed to snap out of his fog and started moving again- even pulling himself up and a few weeks later taking his first steps.  However, the seizures and vomiting did not stop, and Chase continued to be developmentally stagnant in the communication, social/emotional and fine motor skills.  He still would not even eat baby food at almost 11 months.  

Chase's first EEG at 10 months

Videos of 9 month old baby Chase with Infantile Spasms

First Signs of Regression of Development

June 30, 2013. I was in the process of switching pediatricians to another healthcare system completely, out of frustration after reporting these symptoms to no avail, when we witnessed what really appeared to be a seizure.  Chase woke up in the middle of the night screaming like we had never heard him do before.  Tom and I both ran into his room, Tom picked him up and he projectile vomited.  After that, he had several of these head drops, but then started convulsing or shaking for a good 10 minutes.  We went to the emergency room that morning and the ER doctor (who just told us how healthy Chase looked and didn't seem to care about anyone unless they were near death) said “Yep, this probably is a seizure”, as Chase had more of the head drops right in front of him.  He told us we should order the normal seizure workup of MRI and EEG tests, but no one could help us because it was the weekend and these were scheduled tests.  We happened to have an appointment with a new pediatrician the next day on Monday, so he told us to have that doctor order the tests.  The episodes continued to happen throughout that day, more than they ever had.  

At the appointment the next day, the new pediatrician told us this probably was not a seizure but a nodding disorder that Chase would grow out of, and a separate tear duct issue.  We almost had to convince him to order the tests anyway and obviously we were not impressed with the treatment we received or lack of urgency.  There was one practicing Pediatric Neurologist in Fargo at that time, and we could not get in for an appointment for 7 months (!!!) to see her because Chase was not diagnosed with seizures yet.  A new Pediatric Neurologist would be starting in a few weeks and we were told that maybe we could get in to him sooner.  Slowly we were worked through the Sanford hospital system the next couple of weeks.  Tom and I were panicking, as Chase’s development began regress.  He stopped crawling, eating solid foods, and was very lethargic, lying around in a daze.  We knew this was just not right and things were going really badly, and we felt like no one would help us.

On Father's Day- June 2013