Michael's Story

Michael was born September 19, 2008



For 11 months Michael developed normally. He was sitting at 6 months, cruising furniture at 9 months and starting to form words at 10-11 months. Then it all changed...

The week leading up to the first major seizure we had noticed the occasional "eye roll" that we assumed was a sign of him being tired, because he would go to sleep shortly after. On August 31st, Michael was cruising around the living room when he fell over in a grand mal seizure. We were shocked, frozen. We did not know what we were witnessing. Our first thought was that he was choking but after a minute or two he came out of it on his own. He smiled at me while I was holding him, like he had no idea anything had just happened. We went to the hospital immediately. A CT scan was done and revealed nothing. We were sent home. After more grand mal seizures, many more "eye roll" clusters and a few more hospital visits that saw us sent home each time with no answer, we were finally referred to a neurologist.

 

His EEG read as Generalized Epilespy with possible hypsarrhythmia (infantile spasms)

After a week or two with our neurologist in Lawton, OK it was decided that Michael needed more than that hospital could provide. They had tried him on a couple different medications and the seizures were only getting worse. Michael and I were loaded into an ambulance and driven to OU Children's Hospital in Oklahoma City. We met our next neurologist there, Dr. Abid. After another EEG, MRI and bloodwork they decided he did NOT have Infantile Spasms, even though there were signs of hypsarrhythmia on the EEG and some of his seizures presented like them. We were sent home after another day or two with the medication Keppra.

For one week he was seizure free. When the seizures returned Dr. Abid suggested we raise the keppra dosage some. There was no change. After Michael turned 1 years old he went to his pediatrician who said it would be fine to give him one immunization. He had a fever that same day and had an awful grand mal seizure. We were in the ER again. Another medication was tried and failed. Finally we were admitted back to OU Hospital. This would be a long stay...
 

With the support of my amazing husband, daughter, cousin (who stayed at the hospital with me) and family via phone and internet, Michael and I survived a 2 week stay at the hospital. A lot of tests were run over this timeframe. New medications were tried as well. He was not responding well to anything. After a week an epileptologist from Texas came up and a 24 hour EEG was done. The next day it was determined that Michael probably had Lennox-Gastaut Syndrome. The outcome was not good. Michael had already regressed and we were told it was going to get worse. He no longer made any sounds. They predicted he might not walk. He wasn't making eye contact with anyone anymore. Our epileptologist, Dr. Khoury, decided we were try Michael on banzel. This was a new drug made especially for patients with LGS. He would also be on Klonopin. We were sent home a few days later, more confused and scared than ever.

Weeks went by, slowly. We had ups and downs, more hospitalizations, battles with doctors, and many emotional meltdowns. By December we were seeing progress. His seizures had gone from the 100s daily to the dozens then the singles....and on January 26, 2010 they stopped. He still wasn't making sounds but he was walking. He was smiling and cuddling and making eye contact again. He acted more like an infant than a toddler of almost 1 1/2 years old but progress had been made.



Shortly after Michael's seizures were under control the Army would move us to Fort Campbell, KY. We started going to Monroe Carell Jr. Children's Hospital at Vanderbilt. Michael has had 3 EEGs since his diagnosis of LGS and not a single one has shown signs of hypsarrhythmia or Lennox-Gastaut. The doctors still do not know why the seizures started or why they suddenly became under control. Michael is now 3 years old and still takes Banzel and Klonopin. He still does not speak but he can babble from time to time. He plays more like a 1-2 year old than a 3 year old. He has the sweetest personality and rarely does not have a smile on his face. Though communication is tough, he is able to understand much through patient repetition and observation. He has wonderful family members, doctors, therapists and now Special Ed preschool teachers that have helped us along the way.