February 2012, "The Friday of his first-ever 'tonic' seizure"

Charles went another 3 months (December to February) until another "spell" occurred. It was a Friday morning at 8am and we were getting the kids ready for school when he had been having some minor seizures. He and David took a bath and I got him out and put him on my bed to dress him when all of a sudden he got a NEW seizure that I had never seen before. Later, the doctors referred to it as a "tonic" seizure. It lasted about 15 seconds (vs. 4-5) and he arched his body, it was stiff as a board, and his neck was twisted to the right. It was SOOOO scary.

We quickly took the kids to Grandma Dianne's house (so they could go to school) and took Charles to Children's Hospital Emergency Department for, I think, the 5th time. We waited in the lobby for a good hour. We were disturbed about this particular visit because the neurology department did not send down for a consult to the ED, instead they just advised us to increase the meds, yet again, to 3ml twice daily. However, they also perscribed the ED docs to give an IV of 18ml of Keppra. Let me back up and say that, yet again, Charles is having ear infections at this point...a "trigger", we believe. He has has 7 ear infections in a one year period, and is now scheduled to have tubes put in March 9th at Kaiser Franklin Medical Center, here in Denver.

Charles is sporting his "tye-died" shirt that David made for him. After about 4-5 hours, we went home. He slept at the hospital for about 30 minutes - one doctor came in during this time, but I didn't let him wake Charles up to check him out - he DESPERATELY needed some sleep. We went home and he slept for 3 hours after that. The next morning (Saturday) he had a few minor seizures, but he also had weakness in his right leg causing him to fall frequently, making him VERY frustrated. I'll talk more about that in the next post. Charles took his "hospital" blanket with us - Anna (his cousin) made it for him - more pics of that later.

Non-Emergent EEG (3rd one) in Parker

In December Charles had a non-emergent EEG repeated to see if anything had changed from his December 2011 seizures. Grandma Dianne came to the rescue to help take care of Charles during this procedure - she brought her trusty iPad and showed him videos, etc. Once again, thanks Mom!! And, Thanks Aunt Cami for watching Liesl that day. It takes a village to raise Charles. :-)

Charles got to play with some cool toys in the waiting room first. The smile is when he was SO excited that the tech was taking the wires off. I have to say, at first I was leary that there was only 1 tech assigned to do the EEG on Charles, and that since it was outpatient and not done at Children's, I wasn't sure it would go very well, but this tech did a great job. And, so did I keeping him happy for 1 hour. Thank heavens for iPads, books, stuffed animals, and MANY different snacks.

Grandpa's 70th Birthday Weekend...and of course a seizure weekend too

My Dad (Charles' Grandpa) turned 70 in December 2011. His brother and sister and their spouses came to town for the party - Uncle Tom & Aunt Vylee and Aunt Janet & Uncle Eric. Being Jachs, we had to add a little drama to the already busy weekend. But let me back up first. As Charles parents, we have spent his whole life making sure his naptime is the PRIORITY...as we know his rest is so important to help avoid seizures (which we've decided are brought on by a few different things - overstimulation, under-rested, under-medicated, ear infections, etc.). So, for the first time in probably 14 months, we let Charles "stay up late" and "party" with the family for my Dad's 70th. Well, we thought we were getting punished for it when we ended up in the Children's Hospital Emergency Department, yet again (I think that's 4 times now). However, after visiting with the docs, we realized that since it had been his last appointment with Neurologists, Charles had gained 10 lbs, but yet his Rx had never been increased - so he was being under-medicated. At that point, they raised his Keppra amount again - almost doubling it - to 2.5ml (originally 1.3).

May 2011 - Neuro Outpatient Clinic Visit

Charles had some seizures in either April or May of 2011, after not having had any since New Years Day. In May 2011, Annie (Amelia's best friend) was in town for a "girls weekend", and I had a quarterly outpatient neurology clinic visit at that time. Annie got to come with me and we asked lots of questions. As I recall, they increased his meds at that point from 1.5ml to 1.8ml per dosage. Annie, Charles, and I got the famous "Children's Hospital Gelatto" as a treat afterwards. I should have Annie write this post because she will remember it so well, but she and I discussed the amazing atmosphere at Children's Hospital - it's an overwhelming feeling - it's intense, it's impressive, it's huge, it's emotional, it's slow, it's busy, it's hopefully healing. When you go with your child, you are quickly made aware that SOOOO many children are SOOOO much worse off than your child. It emits emotions that are sometimes too overwhelming. One anecdote, we always "valet" the car when we go to the hospital and one time, they valet guy said "how's Charles"? I was flabbergasted. Although I don't have a picture of that day, this photo was taken of Charles the week before - at the park. I've decided I really should include some photos of Charles being his fun, happy, young self and not just a "patient". Charles likes his PJs whether he's at the hospital OR the park. Yeah, 4th child, PJs BECOME their outfit. I just LOVE this baby.

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.