Nolan's seizures

After a very eventful last two weeks, we have come a long way in not only determining the cause of seizures but also in controlling them.  Nolan is under the care of Dr. Jennifer Norman at Baptist.  She is a pediatric neurology specialist and is such a blessing to Jeff and I.  She has such a vast knowledge level and has made herself available through email for quick communication, which is comforting with our situation.

Nolan's seizures started Sunday February 17th.  At that time Jeff and I were unsure of what to make of his movements.  After the twitching stopped, he was back to his normal self and was ready to eat.  We did not have any other incidents that afternoon or evening, so we thought we'd just keep a close eye on him.  Nolan was still sleeping in our room at the time.  At 5:00 am that next morning he once again had another episode.  We knew we needed to get in touch with the pediatrician for direction on what to do next.  At 7:00 am he had yet another episode, which I was able to get a video on my phone of, and the on call physician was paged.  All of these episodes were over within 90 seconds, did not change his breathing patterns, and he returned to normal quickly afterwards.  We were instructed to call back at 8:00 am to speak the the pediatrician.  He wanted Nolan to come to his office for assessment.  Jeff had to get to work and told me to call him as soon as I had any news.  My mom met me at the appointment and we were waiting on the physician to come into our room when he had his fourth episode and the doctor was able to get the room quick enough to see.  It was decided at that time that Nolan needed immediate work-up and we headed to Children's hospital for further evaluation.  Jeff beat us there and the evaluation process started promptly after arrival.

Nolan is such a strong little boy and handled the poking and prodding like a pro.  He was unable to eat for several of the tests and was consoled instead with what they call "sugar water."  It was a syrup that we dipped his pacifier in for him to suck on.  Nolan had quite the liking for the sugar water and we dipped that thing probably 1000 times in the course of the next several days.  In the ER he underwent IV placement and blood draw, foley catheter placement to check his urine, spinal tap, and ultrasound of his head within just a few hours.  The two biggest factors they were trying to rule out was a mass or brain bleed and infection.  The blood tests to look for infection take several days to get back and therefore antibiotics were started to cover anything that could be growing.  All the other tests did come back negative, and we were admitted to the hospital for monitoring and further evaluation by the pediatric neurologist and the inpatient pediatrician.  It was determined that Nolan would undergo an MRI as well an EEG on Tuesday to continue to find the cause of his seizures.  Nolan was seizure free until early Tuesday morning when he had two episodes.  He was quickly placed on seizure medication and the work-up continued.  The MRI was looking for masses, tumors, or any brain abnormalities.  It was such a blessing when the results came back negative for all the above.  He had to undergo anesthesia as well as have a breathing tube placed for the MRI.

After the procedure his voice was hoarse and he had a bad cough with a sore throat.  The last and final test to be performed was the EEG to look for seizure activity within the brain.  16 electrodes were placed on his head and 1 hour of "stillness" was needed to get an accurate picture of brain activity.  Well, the 1 hour took 2 to get in this 29 day year old little guy.  Thanks to my mom who played him lullabys and held his paci in his mouth for him (of course with the sugar water dippings). That evening we received the test results back which were all negative.  What does that mean and what is the cause then?  We received a diagnosis of benign neonatal epilepsy and were told he should outgrow the seizures within a few months to the first year of life.  Although they do not know the main reason for the seizures, it is believed to be due to the growing brain in an infant and abnormal nerve conduction.  Until then he would remain on medication with follow up.  We were told that if he remained seizure free and the blood tests remained negative for infection that we would be able to go home on Wednesday.  Good news considering I was sleeping in a pediatric bed with Nolan and Jeff was in the recliner.

Wednesday we were released home and Nolan was doing well.  He remained seizure free until late that night.  Nolan had 6 seizures.  Jeff and I decided to get a second opinion from Dr. Norman who came highly recommended from numerous sources.  She gave Jeff and I a level of comfort in our situation and adjusted our meds for better control.  She also reviewed all the work-up from OU and determined she wanted to do a bit more testing to look for metabolic conditions that could be causing Nolan's seizures.  If those come back negative our next step would be genetic testing.  The metabolic tests are pending and we should get them back within the next couple of weeks.

We are thankful for amazing family and friends who blessed us with lots of prayers, support, good meals, and to his Gran for the all-night sleepovers so mom and dad could get some sleep.  We are so in love with our little boy and feel confident that this phase in his life will be just that ... a phase.  He should outgrow the seizures, hopefully sooner than later.  Until then, this is the "new normal" at the Thompson house, and everyone is adjusting just fine!! Continue to follow us to see sweet Nolan grow and for future updates!

Sarah