CHRISTOPHER'S RAINBOW
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Christopher was born in 2001. My husband and I were happy and excited to begin our new role as parents. We took Christopher to his "well baby visits" and adhered to recommendations that were supposed to ensure a healthy childhood. This included vaccinating him in accordance with AMA guidelines. When Christopher was 7 months old, I noticed that he would occasionally appear to "startle" - his head would drop and his shoulders and arms came slightly forward. This would be followed by a short cry as if he were frightened. His pediatrician told me that it is normal for infants to startle. When I told him on a subsequent visit that the "startling" persisted, especially after waking from a nap, he told me that Christopher was just teething. I wanted to believe that he was right, after all, he had the education and experience, but I couldn't ignore mother's instinct - thank God.
I took Christopher for a second opinion and although the doctor couldn't find anything wrong during our visit, he recommended that I videotape the "startling". It was hard to tape my baby during the "episodes" when all I wanted to do was comfort him, but I've learned that videos are a great tool for documenting what never seems to happen at the doctor's office. I showed my pediatrician and he again thought I was overreacting, but because I insisted, he agreed to refer me to a neurologist. As soon as the neuro saw the tape, she said, "We need to admit your son to the hospital right away - he is having seizures, which may be caused by meningitis. We'll have to do a spinal tap." I had no idea how serious seizures could be or what a spinal tap entailed. The magnitude of how our lives were about to change didn't hit me until days later.
Christopher's EEG revealed that he had a rare form of epilepsy called Infantile Spasms (IS). Christopher did not get seizure control for over year, despite trying numerous anti epileptic drugs. The one that finally helped his IS was vigabatrin (Sabril). At the time it was non FDA approved and we had to have it shipped to us from Canada - of course it wasn't covered by our insurance. (Vigabatrin is FDA approved today). Christopher had about a year of freedom from seizures. During that time, he acquired skills and began to make developmental progress. Sadly, just before his 3rd birthday, the seizures returned. Children with IS usually go on to have generalized epilepsy or Lennox Gastaut Syndrome (LGS). Because of the progress Christopher had made, his doctors didn't think he would get LGS, so it was a shock to everyone. Daily multiple seizures are typical in LGS. Also typical is the broad range of seizures that can occur, larger than that of any other epileptic syndrome. The most frequently occurring seizure types are: tonic, which are often nocturnal, myoclonic seizures, atonic, atypical absence, complex partial, focalized and tonic-clonic seizures. In addition, children with LGS usually have arrested psycho-motor development and behavior disorders. The diagnosis shattered our hopes and dreams for Christopher's future. We took each moment as it came; the thought of anything more was too overwhelming.
Christopher's seizures came on fast and furious, stealing the skills he had worked so hard to get. Daycare Centers could no longer accept him so we had to hire a live in so that I could continue to work. Expenses mounted and we struggled to make ends meet. Our marriage suffered, as did all of our relationships; friends couldn't bear to see us in so much pain. As difficult as it was to get out of bed some mornings, we never gave up on believing that we would find a way to help Christopher to be seizure free. Christopher's courage and endurance gave us the strength and determination we needed to do whatever it took to help him be relieved of this terrible disease. I didn't include the painful details of the years of searching for seizure freedom on this website, but I do include what finally worked for Christopher in "believe in miracles".
Christopher's EEG revealed that he had a rare form of epilepsy called Infantile Spasms (IS). Christopher did not get seizure control for over year, despite trying numerous anti epileptic drugs. The one that finally helped his IS was vigabatrin (Sabril). At the time it was non FDA approved and we had to have it shipped to us from Canada - of course it wasn't covered by our insurance. (Vigabatrin is FDA approved today). Christopher had about a year of freedom from seizures. During that time, he acquired skills and began to make developmental progress. Sadly, just before his 3rd birthday, the seizures returned. Children with IS usually go on to have generalized epilepsy or Lennox Gastaut Syndrome (LGS). Because of the progress Christopher had made, his doctors didn't think he would get LGS, so it was a shock to everyone. Daily multiple seizures are typical in LGS. Also typical is the broad range of seizures that can occur, larger than that of any other epileptic syndrome. The most frequently occurring seizure types are: tonic, which are often nocturnal, myoclonic seizures, atonic, atypical absence, complex partial, focalized and tonic-clonic seizures. In addition, children with LGS usually have arrested psycho-motor development and behavior disorders. The diagnosis shattered our hopes and dreams for Christopher's future. We took each moment as it came; the thought of anything more was too overwhelming.
Christopher's seizures came on fast and furious, stealing the skills he had worked so hard to get. Daycare Centers could no longer accept him so we had to hire a live in so that I could continue to work. Expenses mounted and we struggled to make ends meet. Our marriage suffered, as did all of our relationships; friends couldn't bear to see us in so much pain. As difficult as it was to get out of bed some mornings, we never gave up on believing that we would find a way to help Christopher to be seizure free. Christopher's courage and endurance gave us the strength and determination we needed to do whatever it took to help him be relieved of this terrible disease. I didn't include the painful details of the years of searching for seizure freedom on this website, but I do include what finally worked for Christopher in "believe in miracles".
One of Christopher's numerous EEGs. We found the standard thirty minute EEG wasn't long enough to capture seizure activity. We now bypass those and only do a minimum of a 24 hour EEG. Not as easy for you or your child but far more revealing, especially as many children with seizures experience abnormal nighttime EEGs. This is one of those battles you may need to fight - insurance companies and some doctors prefer a thirty minute EEG.
