New Year's Day 2011 - and what a day it was...

On New Year's Day 2011, Charles was 9 months old and the seizures reared their ugly head again. By this time, he had been on meds for 3 months, so were they doing the trick? As I recall, we spent 10 hours in the Children's Hospital Emergency Deparment (now, for the 3rd time). The neurologists requested a repeat of the EEG to see if they could capture the tremors/seizures/jerks while they were happening. All the seizures to date looked like jerks or shaking or pulsing. They would last approximately 4-5 seconds each and he could have up to 200 per day. But he would only have them for 1-2 days, then sometimes go months without having them again. Grandma Dianne took care of all of the kids back home - Charles' 3 siblings. Mom - thanks for always watching the kids, coming to the hospital to support us, accompanying me whenever Ken needed to work. And, thanks everyone else for all your support...baby blankets, blessings, meals, identifying the seizures, etc. I'm going to try to remember to mention everyone involved whenever possible.

"The Meds"

So Charles takes one medicine twice daily - called Keppra or (Levetiracetam) and Clonazapam when needed (during an active "cluster" of seizures). After his first round of Neuro doc visits, they prescribed about 1.25.-1.5ML of Keppra, twice a day. Then the Clonazapam is a soft flat wafer that we break in half and Charles mouth absorbs it quickly when he's having seizures - it takes 10-30 minutes to take affect, it's sweet in taste, so he doesn't mind it. He takes his medicine every day SO WELL, he's such a good boy to always take it easily for us. He squirted out a whole bottle once, and after Mom (Amelia) negotiated very-savvy like with the pharmacy, I was able to avoid the "cash price" for "lost" medicine. He don't yet know how long he will be on the medicine, but one of the Neurologists at Children's Hospital once told us that the child has to be "seizure-free" for 2 years to get off the meds. As you read on, you'll see we're no way near being off the meds.

6 Months Old - It Happens Again...

The next month, it happened again. So, this time I knew it wasn't right...Ken and I took Charles to Children's Hospital, Emergency Department. There, they did his first EEG - they put 27 dots with a black sharpie all over his head, then they glued 27 wires to his head and wrapped him up like an "Avatar" - remember the long cone-like thing coming out of their heads in the movie? It was aweful. I was so scared for him. That's where we first met our Neurologist, Dr. Meredith Schultz. We really liked her. In addition, because she was a resident, she was accompanied by the most senior-level Neuro Doc in the whole hospital, Dr. ?? He was the best at reading EEGs. After much review in the hall and not in front of us, they came in together and told us that Charles was having seizures - albeit small ones - they were diagnosing it as "Benign Infantile Myoclonus" (described below). They were perplexed by his EEG recordings, as they had only seen them like a few times in their career. And, hence we start the life of "mystery"...Dr. Schultz has said on numerous occasions since then, that "Charles worries me." - he's a mystery to the Neuro docs, and as you will see in subsequent posts he continues his mysterious seizure disorder.

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Benign myoclonus of early infancy is a paroxysmal phenomenon of the first 2 years of life which occurs in neurologically healthy infants during wakefulness, and is usually triggered by excitement or frustration. The phenomenon is characterized by a shudder-type, paroxysmal motor manifestation involving mainly the trunk and sometimes the head, associated with tonic limb contractions of variable intensity, from hardly noticeable to more sustained. The clinical manifestation should not be confused with the spasms of epileptic infantile spasms syndrome, or with tonic reflex seizures of early infancy. Although the phenomenon is already widely known, its polygraphic recording is rarely reported in literature.

5 Months Old - It All Starts

My sweet Charles was born April 2010. In September (5 months old), I was holding in him in my bedroom, when all of a sudden he started crying. He was terrified. He was inconsolable. He looked at me like he didn't know me. His body was shaking. He was scared beyond imagination. I couldn't figure out WHY? After about 45 minutes he stopped. So, I didn't think TOO much of it because he did stop...maybe he pinched a finger, or got a "falling" sensation when I put him on the bed. I don't know, but it was SO strange - and he's my 4th child, so I thought I had seen it all.

Photo: Mom & Baby, September 2010 (during Shed construction week)