First Post - backstory

When Oliver was first born, the dr told me to look up and see my baby boy. My 2nd baby boy. My first thought was "he looks like my father". My second thought was that he and my other son would have so much fun growing up together, running, skateboarding, swimming at the beach, going to Disney World and always being great friends and brothers. When Oliver was 3 weeks old he came down with viral meningitis. We didn't realize he was even sick until he got a really high fever one Friday morning. He felt too warm to me, so I called a friend to bring me a baby thermometer that worked since mine was almost 3 years old! He had a high enough fever that the dr sent us to the ER. They did a full workup and admitted him to the hospital. Over the 4 day hospital stay Oliver did great. He slept a lot, his fever stayed down, no other symptoms were noticed. The spinal tap returned the results that he had a viral meningitis, which we were told is less scary than it sounds and that he should recover just fine with no lasting effects.

Fast forward a few months, Oliver was about 2-3 months old and I noticed a weird head bobbing thing going on. Shortly after, he started having a rapid eye movement. We showed a video to our pediatrician who decided the head bobbing wasn't troublesome, but the eye movement looked like it might be an opsoclonus, typically found in patients who have a childhood cancer called neuroblastoma. The video was sent to an oncologist who recommended a CT scan from the neck down to rule out a tumor. We were able to do so and relieved that our health scare was over. As a followup to the eye movement that still existed we saw an opthamologist and neurologist who both agreed the eye movement was actually a nystagmus but didn't look serious enough to warrant a brain scan at that time. We made followup appointments for both for a few months out and thought it was probably just some leftover link from the meningitis that would go away with time.

While we went on with our lives I noticed that Oliver didn't seem to be developing like my first son had. by 4 months he wasn't able to hold his head up for very long, could no longer roll front to back, had not found his hands or feet, could not grasp objects etc. Both Neuro and Ped said to give him til 6 months to catch up as he was just on the slow side of average. I decided to call Early Intervention and at least have him evaluated to see if we could qualify for physical and occupational therapy to help him catch up.

Last week , at almost 5.5 months old, Oliver had a major spasm fit that looked like a seizure. We videotaped it and took him to the Dr that night. The Dr (not our regular ped), said it wasn't typical seizure behavior and it looked like a pain response. He checked him over head to toe and then looked at his eyes with a blacklight and special drops. He found a small scratch on the cornea and figured that was where the strange spasms came from. He ordered an EEG just to be safe. 2 days later we took Oliver back to a different Dr at the practice to make sure his eye was better. Earlier that morning he had another spasm episode , despite the fact that his eye was all better. The Dr we saw that day listened to me describe his movement and said I should get an EEG asap. We had one the next day.

On March 11, 2010, Oliver went in for his EEG. As soon as all the equipment and leads were attached to his head, he drifted off to sleep after a horrible night and morning (you have to sleep deprive your baby before an EEG). Right then, he started spasming. The EEG recorded a hypsarrhythmia, which is a chaotic brain pattern seen on EEG. Oliver was diagnosed with Infantile Spasms and immediately admitted to the hospital.

Infantile Spasms do not sound terribly scary at first, because they are clusters of spasms or seizures that kids usually outgrow by 24 months. However, because this is such an important time in the development of a child's brain, it is incredibly debilitating. If you read about this condition online (which I did for several hours after the diagnosis) it sounds grim and impossible to face. All of a sudden I flashed forward to a life without my boys playing together but one boy running and playing while the other sits limp and lifeless in a wheelchair. This was not how I envisioned my happy little family. Oliver had one more seizure episode while in the hospital last week. We brought him home and started him on a medication called Sabril. The medication can lead to vision loss and also make him incredibly sedated and groggy, which it does. It seems clear to me that while he's having seizures he won't be able to develop normally but the same outcome seems to be a possibility while he's on this medication. So here we are:

1. Hoping this medication works to prevent seizures until his EEG is clear and he outgrows this condition
2. Hoping that he doesn't develop another seizure condition through his early life or later in life
3. Hoping that the medication doesn't sideline his development so badly that he will never have the chance to catch up

I am writing this blog mainly as an outlet for my own frustration, because I don't want to burden friends or family with the details of our daily struggle against Infantile Spasms. I also want to get as much out there as possible so it doesn't build up in my own mind and make me insane. I've spent the past few days crying more tears than I ever thought possible, raging against this awful disorder, and grieving and mourning the baby I thought I had while trying to accept the baby he is today.

Oliver started the Sabril on Saturday March, 13. On Sunday he had more spasms than ever before and we all lost hope. I know that it can take up to a week to start working or we may need to mess around with his dose to get the seizures to stop. We have a followup EEG in 2 weeks and will know more then. If the seizures do not stop and the EEG doesn't clear we may have to try alternate medication, ACTH. To me, ACTH has worse side effects associated with it, but it is worth the trade off of having him be seizure free. There are a lot of unknowns at this point, mainly we don't know how delayed or disabled Oliver may be after all of this. If he isn't able to develop normally we will have to work really hard to try and get him to catch up, but we also have to accept that he may never catch up and will likely lose mental capacity in this struggle as well.

So we need a miracle. But more than just one grand miracle we need lots of tiny miracles. We need the medication to work and the seizures to stop, we need the EEG to clear, we need to eventually be able to wean him off the medication without the seizures returning. A miracle is needed to allow him to grow and thrive and develop beyond the physical and mental capacity of a 2 month old infant. Watching him frozen in time is almost has hard as watching the spasms rock his body and make him cry. So if you're the praying type, please pray for us. If you're not, just think good thoughts. One day I would like my little boy to be able to sit and actually read this journal and understand how much we love him and how much we will do to help him through this struggle.

04/26/2010: Update - since this original post we've learned that Oliver has a condition called Congenital Disorders of Glycosylation. It's a genetic disorder that he was born with, and the explanation for his nystagmus, infantile spasms, and gastro issues. We are in the process of learning more about the condition, the symptoms, and how it will affect Oliver in the long term.