Luke's Story

When most people think of epilepsy they think of a person who has an occasional seizure and then life goes on as if nothing has happened. At least that's what I thought...until epilepsy hit my family.

Luke was born a healthy 9lbs, 1 oz and a stocky 19 inches long. He had the sweetest personality. I could take him absolutely anywhere and no one would ever know he was there. He simply had a peaceful and loving countenance about him. Luke did have severe and chronic asthma, but otherwise was extremely healthy! At the age of two years old he was potty trained, knew his colors, and was blossoming like any other two year old. On July 4th, 2003, one month after his 2nd birthday Luke had his first seizure. We were at the Flea Market, he was sitting peacefully in his stroller. I turned to check on him and was shocked to find his eyes rolled back in his head, and he was turning blue. I screamed for someone to call 911 and grabbed my baby out of the stroller. He was limp as a noodle, someone grabbed him out of my arms and layed him on the cold gray concrete floor of the flea market. Joseph and his father were on their knees praying and I was in total shock. All I remember is the man who grabbed him from me saying he was stable. I said no he was not okay, he was totally unresponsive! Luke had regained his color, but lay there on the cold concrete floor totally motionless and lifeless. I suddenly remembered that Abby was there too, she was 5 years old at the time. I looked over and saw my mother in law crying hysterically, a crowd of women were around her trying to calm her down. Then I saw Abby, standing off to the side of the crowd by herself crying....as if my heart, weren't broken enough. I quickly put my arms around her and tried to comfort her, reassuring her that Luke would be just fine.

Luke remained unresponsive for nearly 3 hours. The intern doctor couldn't even get his reflexes to respond and quickly left the room to have the resident doctor examine him. She explained that Luke had probably had a seizure and that most people, at some point in their life will have a seizure. For precautionary measure, she admitted him for overnight observation. The night remained uneventful until 3:50 am, Luke was sleeping in my arms when suddenly he began shaking all over, his little body was rigid and his eyes were crossed. The nurse took him from me. She began suctioning the saliva from his mouth, his little body unrelenting, jerking in rhythmic movements. His eyes had rolled back in his head again and he was turning blue. Joseph and I watched in horror and kept praying for our innocent little boy. Finally after 6 minutes, Luke stopped convulsing and was post ictal till the next morning. Little did I know that this was the beginning of a roller coaster ride I definitely did not want to be on.

Luke remained seizure free for 6 months, then another terrible seizure due to an ear infection. Abby was recovering from mono and kept coming down with strep throat every 3-4 weeks, so we opted to have her tonsils removed in hopes of her not being so sickly. She had them removed the day after Christmas. She was recovering on the couch, it was New Year's Day 2004, I went to check on her. I looked down the hallway and found Luke lying on the floor convulsing. This seizure lasted over 20 minutes. The next day, Luke began having more seizures, then different types of seizures. They became so frequent and violent that on some days he couldn't even stand, walk, talk, or even eat. He quickly began to regress. When he was in epileptic status, which was nearly constant, he would drool, and stare blankly ahead. I would hold him, or prop him up with pillows . I knew in my heart that we were in for a long hard road, I prayed for God to give me peace. Within only a few short days, I felt God's peace and love wash over me.

We sought out specialists and stayed on top of every treatment imaginable. Luke has tried almost every anti seizure medicine on the market. At one point, he was on four medications taken 2-3 times each per day! In spite of all our efforts and prayers, Luke continued to seize out of control. Luke was diagnosed with Doose Syndrome, also known as MAE, Mycolonic Astatic Epilepsy. An extremely rare type of epilepsy that only affects less than 1% of ALL epilepsy! I had been praying for God's direction in our next step. I felt lead to the Ketogenic Diet. It is a strict diet with no sugar and very limited carbs. Luke fasted 24 hours and was hospitalized for 4 days while initiating the Ketogenic diet. The diet did help, but he was still having seizures daily, at least now I could count the number of seizures he was having and he was able to walk and play.

Having someone with epilepsy in your family will change your life forever. Luke had many seizures during the nighttime while he was sleeping. His seizures were almost always prolonged, plus the risk of suffocation from a seizure if he was lying face down was extremely high. I slept with Luke every night to keep an eye on him. Abby began sleeping with Joesph because she felt left out. One summer night, nearly 1 year after Lukes' first seizure, I woke up to Joseph screaming for me to come here! I knew there was panic in his voice. I ran in there and found Abby having a seizure! It lasted a little over 3 minutes...Joseph and I were both in disbelief! I crawled in bed with Abby and Joe took watched over Luke. She had another one about 30 minutes later, it only lasted a couple minutes. I layed beside my beautiful blonde little girl and cried my heart out. I begged and pleaded with God, not my little girl now, not both of my sweet children...I spent the rest of the night talking with God and praying for peace with this new revelation. I called the neuro the next morning and they got Abby in right away. An EEG confirmed what we had witnessed the previous night. Abby was diagnosed with Benign Rolandic Epilepsy. BRE is the most common form of epilepsy and there's 99% chance it will be outgrown. In the back of my mind I knew this, but I still felt defeated.

The next several weeks were the very difficult. Joseph and I were depressed, it seemed our world was falling apart. Luke was seizing daily, he wore a shock resistant foam helmet to protect his head from the violent drops and falls the seizures induced. He constantly kept bruises all over his body, he was on the ketogenic diet which was very difficult, he had broken his nose, needed sutures, blackened both his eyes on numerous occasions, and smashed his teeth and gums, Abby had began seizing, and financial hardships were setting in. I did not want to continue another day without the renewed peace and comfort that only God could give me. After much fasting and prayer, God blessed my request.

Luke seized daily for 2 1/2 years. He had tried almost every medication possible. The diet was not longer working, Luke was slipping into status more often. The specialist wanted us to try a high risk medication on him. I told her we would have to pray about it first. She said it was our only option, or we could try a medication that was not FDA approved. Surgery was not an option since Luke's seizures came from all over his brain, instead of one focal point. I did research on the medication that was high risk, Felbatol. It's warning label says it should be used as a last resort due to the high risks of deadly complications. We decided to begin the Felbatol but wait till after the Holidays. Luke's Make A Wish trip was planned for Christmas Day through New Years Eve and we didn't know how the medication would affect him. We wanted him to enjoy his trip to see Mickey Mouse!

In January Luke began taking Felbatol in addition to the 2 medications he was already taking daily. January was an awful month for Luke, he was in status quite often. The first week of February was horrific as well, I was beginning to wonder if this new medication was going to help at all. My mind was racing ahead to what our next step would be-the non FDA approved medication..... then out of nowhere, it happened! Luke was in status one day, he couldn't even walk; the very next day he only had 3 seizures, then 1 seizure, a few days later I let him go without his helmet. I was scared, but it was so nice to see his beautiful head! Luke continued to have a few more tonic clonic seizures. His LAST seizure was April 14th, 2006! Praise God for our miracle! I do believe that God healed Luke.

It has now been 18 months since Luke's last seizure. He is blossoming every day! Exactly 2 years ago, Luke had an evaluation from his therapists. He was on a level of a 23 month old. He couldn't work a peg puzzle; now he is working 25 piece puzzles in only a few minutes! He is in a normal Kindergarten class and is doing exceptionally well. He can even count to ten in Spanish! The only problem Luke has remaining from his battle with epilepsy is his maturity level. He is immature for a 6 year old and has problems sitting still in class. My web support group has reported the same problem with their children as well.

Abby continues to have seizures. Actually she just had one last night. I have that same peaceful feeling from God that someday she will be seizure free as well!

Thank you for reading this extra long post. I shortened it as much as I could! Please remember that there is nothing that God cannot lead you through, if you allow Him.

Take care and God bless you!


Luke & Abby on their first day of school ~August 2007