Joseph Runels had just turned two months old when he had his first seizure. We rushed him to Children’s Healthcare of Atlanta at Scottish Rite, and was admitted for numerous tests. We were told that Joe had New Onset Seizures, which was common, and that they probably would go away as he grew. He was put on Phenobarbital and then we were sent home with a neurologist’s name for a follow-up visit.

Two weeks later Joe’s seizures returned, but they would only occur when he would wake up. His eyes would jerk and he would ball up quickly, as if he were being punched in the stomach. He would do this a couple of times and then stop.

We went to the neurologist and described his seizures. He recognized them as Infantile Spasms or West Syndrome, a form of epilepsy. Infantile spasms didn’t sound that bad, but then the doctor told us that mental retardation was probable, and this type of epilepsy was extremely hard to control because it was a rare condition, affecting 1 out of every 157,000 children. There was not a lot of information about the condition even though it had been discovered for 50 years. In other words, no one understood Infantile Spasms.

We were admitted once again to Children’s Healthcare of Atlanta at Scottish Rite on September 10, 2002, for more tests. Eventually I would learn to administer ACTH injections for my son. ACTH is a steroid that comes in a serum that can only be given by an injection in the thigh. On September 11, 2002, Joe’s 3-month birthday, he was formally diagnosed with Infantile Spasms. We were sent home the next day with needles and a tiny vial of ACTH. I gave my son injections twice a day for several weeks. This slowly progressed to once a day and to once every other day. It lasted for about three months, and even to the last day, I hesitated every time I went to stick that needle in my baby’s leg. Joe finished his first round of ACTH on December 5, 2002, with absolutely no change in his seizure activity.

After ACTH, it was a “free-for-all.” There was so little known about Infantile Spasms that only a handful of medicines seemed to work and with reasons unknown. So Joe’s neurologist wanted to try Topamax. Joe was still on Phenobarbital, and I was weaning him off of ACTH, and putting him on Topamax. He was on all three medicines at one time, and was sleeping 21 hours a day, waking up only to nurse. He had no quality of life.

I’m not “doctor bashing,” but his neurologist just wasn’t treating his seizures aggressively enough. We were told that the sooner the seizures stopped, the better his chance of less severe brain damage. So we decided to get a second opinion. The more we thought about it, the more we decided to get the best second opinion that we could find, the Mayo Clinic in Rochester, Minnesota. We flew to Minnesota on November 18, 2002, and saw a pediatric neurologist the next day. She confirmed our thoughts that Infantile Spasms needed to be treated aggressively for better results. She took him off of the Phenobarbital, kept him on Topamax, and added a third drug, Depakote. At the same time, I was still weaning him off the ACTH injections. So once again, Joe was on too many drugs at one time, four to be exact.

The combination of Depakote and Topamax gave my son a 1 in 500 chance of developing liver failure. The doctor said that we had to weigh the risks. She also said that Joe needed to be treated locally, so she referred us to the Emory Clinic in Atlanta, GA, to Dr. Larry Olson.

After all these medicines, Joe was still not getting any better. At 2 months old, he was having two to three seizures a day. By December 2002, he was up to 75 to 100 seizures per day. He was severely developmentally delayed. At 6 months old, he couldn’t even hold his head up. He couldn’t roll over or even eat from a spoon. In December 2002, he started physical therapy.

I didn’t know what else to do. I went to the internet and found information on the drug Vigabatrin, which is only available in Canada and Europe. Still not knowing much about it, we approached the subject with Joe’s new neurologist in January 2003. He was fine with trying Vigabatrin, but wanted to try one more drug here in the United States. That drug was Zonegran, and of course, it didn’t work. After 6 weeks on Zonegran and Topamax, I called to get a referral to Canada. At the end of March, Joe was accepted as a patient of Dr. Minassian at the Hospital for Sick Children in Toronto, Ontario, Canada. Joseph finally received an appointment for July 30, 2003.

Vigabatrin is not available in the United States because it is not FDA approved. A possible side effect is perifial vision loss. Again, we had to weigh our risks. By the time Joseph received the Vigabatrin, he was having over 500 jerk-seizures a day. His seizures were sometimes so hard that he would scream out and thrash around in pure terror. It was frightening and I felt completely helpless as I watched my baby scream and flail his little arms. The Power of God, lots of prayer, and Vigabatrin changed my son’s life.

Our trip to Toronto was very enlightening. I found out that Vigabatrin was more a miracle drug than a “last-ditched” effort causing babies to lose their vision. Dr. Minassian said that it is the first drug of choice in Canada for Infantile Spasms, not the last. I was told that some children start the drug in the morning and by the next day the seizures are gone, never to return. Dr. Minassian also said that he has hundreds of children on this drug and not one has lost their vision. He told us that Joe would probably never have had developmental delays if we had put him on Vigabatrin first thing. He said that if we could get the seizures under control, then Joe would be a different kid developmentally.

He sent me to the hotel room with the hope that this drug still might help my son who was now 13 ½ months old. Dr. Minassian said that he couldn’t know how long it would take before it started to work because Joe had been on so many medicines.

We received a 6-month supply of Vigabatrin the next day, Thursday, July 31, 2003. It came in powder form in sachets. Joe received his first dose that night.

Keep in mind that Infantile Spasms are mostly controlled by sleep, either waking up or going to sleep. Joe would have his hardest seizures in the morning because that was his deepest sleep. In the morning, he would have jerk-seizures anywhere from 5 to 10 minutes and he would scream.

Friday morning we woke up in the hotel room to no screams. After one dose, Vigabatrin had controlled the intensity of the seizures. For months now, I would wake up to screams in the morning and helplessly hold my son’s jerking body. Joe still had seizures that morning, but they didn’t terrify him.

We flew home to Georgia, August 1, 2003. Joe’s seizures started to go away. Two weeks to the day, we no longer saw any seizures. Now his right eye twitches a little bit after he wakes up.

Today, Joe is a happy, healthy child. He is developing faster than ever before. In the 5 months since we started Vigabatrin, he can now push himself up to a sitting position, he holds his own sippy cup, he walks forward in his walker, and is starting to get on all fours rocking back and forth, getting ready to crawl. He has a quality of life that he didn’t have just 5 short months ago. Thank You, God!

Looking back on the last 16 months, it was a long, terrible valley that my family and I had to go through. But through it all, we felt an unexplainable peace. A peace that passes all understanding - that can only come from Almighty God. I do have a Father in Heaven that loves us so much to send comfort and strength to His broken-hearted children. I couldn’t have made it without God. Remembering all the times, the time when we waited on the first CT scan, when Joe was in the ER, at 2 months old. All the terrible thoughts that ran through my mind. I would have gone crazy had it not been for the touch of God’s Great Hand. I couldn’t have given my son injections. I wouldn’t have been able to take my son week after week and watch nurses stick my son’s arm for blood tests and move that needle around inside of his arm, looking for a vein. Or hold my child’s jerking body for it to only go limp in exhaustion. No, I would not be here had it not been for my Father in Heaven.

The pain is still here in my heart. I’m not super-human or unfeeling. I just know where my strength to face everyday comes from. Joe’s future, humanly speaking, is uncertain. He will almost certainly, between the ages of 3 and 5 develope different seizures. By that time, we should know how developmentally delayed he will be. But I do know Someone who holds Joe’s future in His hands. He already knows our tomorrow. I can’t worry about it because I’d go crazy.

People are starting to notice that there’s something wrong. People are commenting on Joe not pulling up or walking. He’s a big 18-month old. I just smile and say that he hasn’t learned yet. Who wants to hear my “10 minute spill” on the rare and often confusing diagnoses of Infantile Spasms?

We are adjusting fine though. My 3-year-old daughter doesn’t question our 5 trips a week to Joe’s speech therapist, physical therapist, or occupational therapist. It’s just a part of our life. I can’t fight it, so I just accept it as what it has to be. I’m passed questioning God with my numerous “Whys?” I am truly thankful for my ever smiling, laughing, precious son.

I wouldn’t trade this journey for anything. I’ve learned many things. I’ve experienced God in ways unexplainable. I love my son. He’s just simply perfect in my eyes and God’s eyes.

Joseph Kelly Runels is so loved by his daddy, me, his sister Rachel, his Mi-Mi, and his Da. He owns a special part of his Paw Paw’s heart. He’s loved by his Maw-Maw, his Nanny, and his Grandma, his Grandpa and Nita, and all his aunts, uncles, and cousins. Joe is a special boy, always smiling. God has a wonderful plan for our precious son, Joseph.

When all this is done, whether here on earth or one day in Heaven, my goal is the same as Job of the Bible. He said in Job 23:10 - “But he knoweth the way that I take: when he hath tried me, I shall come forth as gold.” I just want people to see God’s love and mercy in me, and I want to be found doing God’s will.
- Page Runels (mother of Joseph)

Job 23:10 - But he knoweth the way that I take: when he hath tried me, I shall come forth as gold.