Cyrs

Cyrs

Wednesday, August 28, 2013

Cameron's Story...so far.

I'm starting this blog as a way for Shawn and I to share updates and news about Cameron as we go through the next steps to (hopefully) "cure" Cameron's epilepsy.

A little background for those who may not know the whole story:
When Cameron was born, I remember saying that I just hoped we wouldn't have a colicky baby (should have knocked on wood), because we were in for it...big time. Cameron slept, ate, pooped and cried non stop and was diagnosed with colic, but was "the picture of perfect health" at 3 months old. It didn't stop until he was about 5 months old.

When Cam was 6 months old, one night I noticed he was looking a little out of it while sitting in his swing. I picked him up and he was turning slightly blue then suddenly he got really warm and was back to normal a minute or two later. This happened another couple times within the next day so we called his doctor. We brought him in and while the nurse was in with us, he had an "episode" - the nurse cried. Yes, she cried and asked us how we had been able to sleep with this happening. Thank you, nurse. SO we were then referred to the Pediatric Neurology Department at Dartmouth Hitchcock Medical Center in Lebanon, NH. At the time, Cam had just started eating solid foods. We had taken a few videos of his "episodes" to show the doctors there because we hadn't found any trigger that caused it to happen. They suspected he was having constipation issues that were causing pressure on his vegus nerve and making him slightly unconscious, so we went home with an order for prune juice and no more solids for awhile. Almost exactly one month later, the day Shawn and I got engaged, it happened again. The next day it happened many times, over and over. Each time taking Cameron longer to get back to normal. Shawn was on the phone with DHMC back and forth all morning, until Cameron started vomiting a lot. They had us take him to the ER in Keene so he could be monitored, because with each episode his breathing became very shallow and dangerous. At the ER, he had a number of additional episodes and while hooked up to the monitors the doctors noted that his O2 levels were dropping to 40% during - a very dangerous level for a growing baby. They ended up sedating him and putting him on oxygen, and from there we were taken by ambulance to the Children's Hospital at Dartmouth.

We spent 4 days at CHaD, having an MRI and a 24 hour EEG where they confirmed that Cameron was having Complex Partial Seizures (and later, also Focal Motor Seizures) possibly caused by a slight asymmetry in his left hippocampus. He was diagnosed with epilepsy at 7 months old. He was started on an IV form of what would be his daily medication so it would get into his body faster. He had a daily med that we would give him 2x day and an emergency med for any seizure that lasted longer than 5 minutes. At that point, he would go 5 months without another seizure. Two days after his 1st birthday, he had a seizure bad enough that required his emergency med. This would start the adventure of medication dosages/types/times/combinations. Throughout the next 2 years, Cameron would be changed to 4 other medications or combinations of meds, we'd use his emergency med 4 times, he'd have 3 more EEGs and have to see a kidney specialist because of some meds effecting his kidneys and the longest he'd go without a seizure was one 2 month stretch. He would show serious left-hand dominance early on, have a hard time balancing and be the clumsiest toddler on the planet. On May 9, 2013 he had a repeat MRI, because he was only 7mo when he had the last one, and nothing seemed to be changing.


The MRI showed that Cameron has a deformity in the left side of his brain. The areas that would normal be curvy and round are globular and shape-less. This pretty well proved the reasoning behind his left-side dominance and also gave us the clue that he has a blind spot in his right peripheral vision. Cameron's new Neurologist - Dr. Richard Morse, discussed trying other medications, but mentioned that for children with early-onset epilepsy, like Cameron, usually if one medication doesn't work, they try another. If a 2nd med doesn't work, there is a mere 5% chance that a 3rd med would be effective - we were on our 5th med. So we focused on other options. Dr. Morse discussed with us that removing the globular part of Cameron's brain would most likely stop any and all seizure activity. In Cameron's case, they assume he was born with this deformity and that he's been having seizures his entire life, just presenting in different ways (hence the lengthy colic spell). He can talk fine, his memory is great, he is a very smart kid, he's just a little clumsy. Dr. Morse believes that his brain formed the pathways needed to function properly, around this area of his brain, it just misfires sometimes. Removing it would cause minimal issues because his brain already works around it. He's also hopeful that Cam's clumsiness and right-side weakness would subside. The only likely problem would be that his blind spot on the right side would become larger (No left handed batter here!). After deciding that we would like to pursue this option, Dr. Morse ordered a PET Scan of Cameron's brain. Doing this scan allows the doctors to have a map of brain activity. They want to see how large and how deep the abnormality is.

We have not had a discussion with the doctors about the results of the PET Scan yet, but in brief: a large portion of the left side of his temporal, occipital and perietal lobes do not function. For those of you who know Cameron well, you know that he is a completely competent, smart, funny, crazy kid - it's amazing what the brain can do! Next week, on Sept 3rd we will meet with the Neuro Surgeon for the first time and hopefully have a better understanding of what the PET Scan showed. There's a chance they'll still want to do more tests. We're confident in their abilities and know that they have Cam's best interest in mind.

2 comments:

  1. Love that little boy. He's amazing.

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  2. Thank you for sharing with us Cassie and Shawn. Baby Cam is a very special little man. Love him and you both to pieces!!

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