What the Hell, Epilepsy! Make up your good-for-nothing-piece-of-garbage mind already. A Grand Mal ... AWAKE?!? Seriously? God damn it. Damn it, damn it, damnit. Never has that happened. Never. Not even at his absolute 50+ seizures a day worst. Not ever.
Until now.
Screw you Epilepsy. Screw you.
Monday, June 4, 2012
Sunday, June 3, 2012
Time to play some catch up (Part 1)
My apologies for my long stretch of silence. Things popped up, our family got busy, and at points, life got interrupted. I'll do my very best to fill in the blanks but, thanks to my mommy-brain, some things will surely be forgotten.
James is still going strong on the Ketogenic Diet. We've fallen into it, dare I say, easily now. It took a bit of getting used to but, now it's all that we know. His seizures, thanks to the diet, were controlled beautifully from December until early March. Starting the first week of March, these strange cluster seizures appeared. I can't be sure if he was having them sooner than March because they didn't trigger any alarms and I wasn't looking for them. I really think we caught them when they first started because once they were here, they were here daily and then very quickly multiple times a day.
The "new" seizures are still tonic-clonic in nature but are nowhere near the "old" seizures on the scary, life threatening scale. The old ones, which still appear once every 7 -14 days, can drop his oxygen rate into the 30's immediately, but the new ones barely drop into the 80's at all. The new ones are scary in their silence. No significant change in vital signs means no alarms. No alarms, no bells and whistles means it can go unnoticed. Now, we can no longer put him down for a nap and feel that false comfort provided by him being hooked up to his pulse-ox. Now, we have to put him to sleep on the rug of the room we're in or, quite literally, walk into his room every minute or two of his nap. Boy, does that slow down the productivity of the house. No more showers during nap time. No vacuuming during nap. No laundry, weeding the garden, playing outdoors with Liv, or making the beds during nap time. Cooking? Well, that's now a long production as well. The only thing that has benefitted from this is my cardio workout. Lots of sit, stand, walk, stand, sit. Repeat. I should have great legs this bikini season. Silver lining I suppose? As they sing in The Life of Brian, "Always look on the bright side of life ...(whistling)."
So, back to Mr. James. These new seizures suck, plain and simple. I thought we were on our way to seizure free or maybe 1-2 a month and then wham! Slapped in the face. There appeared to be no reason for the sudden onset. His diet remained the same. His ketones were moderate to large, perfect for his diet. He was sleeping great, well, until it was interrupted by this unexpected arrival of seizures. No rash. No fever. No fussiness. Everything seemed normal (I do a little silly laugh every time I refer to our life as "normal").
The clusters continued for about a week and then James stopped eating. Then, a day or two later, he stopped drinking. No eating or drinking means no seizure meds getting in. The next day he just slept. Then his O2 sats started to drop.Then, we were admitted to Floating.
Upon our arrival to the ER, they started an IV (regular saline only. No Dextrose - diet rules, ya know), checked vital signs, and took a chest x-ray. The doctor came into our room and said "James has pneumonia." To which Mike and I responded with "Phew! It's just pneumonia." I think that doctor thought we were nuts. How many parents say "Just pneumonia"? In our minds though, pneumonia is an answer. And it's an answer with a cure! It was also an answer for his new seizures. Hooray pneumonia!??!?
James was admitted to the pediatric floor and started on some antibiotics. Unfortunately, this plan changed the next morning. The pneumonia and the cluster seizures were working against each other and poor James was stuck in a Catch 22. The pneumonia caused more seizures. The seizures required emergency medicine such as Diazepam or Ativan to break them. The emergency meds sedated him which decreased his lung function. Decreased lung function caused atelectasis, his lungs to stick together. And THAT landed us in the ICU and James on a C-Pap machine.
So much for "just" pneumonia, right?
The C-Pap, loads of antibiotics, and steroids did the trick and fixed that pneumonia AND the seizures! We moved from the ICU back to the pedi floor and, by the end of that week, we were home. James had a few days remaining of his antibiotics so we wrapped those up and boy was he looking good!
Breathing great and seizure free.
Beautiful.
3 days.
3 quiet days and then they were back...
James is still going strong on the Ketogenic Diet. We've fallen into it, dare I say, easily now. It took a bit of getting used to but, now it's all that we know. His seizures, thanks to the diet, were controlled beautifully from December until early March. Starting the first week of March, these strange cluster seizures appeared. I can't be sure if he was having them sooner than March because they didn't trigger any alarms and I wasn't looking for them. I really think we caught them when they first started because once they were here, they were here daily and then very quickly multiple times a day.
The "new" seizures are still tonic-clonic in nature but are nowhere near the "old" seizures on the scary, life threatening scale. The old ones, which still appear once every 7 -14 days, can drop his oxygen rate into the 30's immediately, but the new ones barely drop into the 80's at all. The new ones are scary in their silence. No significant change in vital signs means no alarms. No alarms, no bells and whistles means it can go unnoticed. Now, we can no longer put him down for a nap and feel that false comfort provided by him being hooked up to his pulse-ox. Now, we have to put him to sleep on the rug of the room we're in or, quite literally, walk into his room every minute or two of his nap. Boy, does that slow down the productivity of the house. No more showers during nap time. No vacuuming during nap. No laundry, weeding the garden, playing outdoors with Liv, or making the beds during nap time. Cooking? Well, that's now a long production as well. The only thing that has benefitted from this is my cardio workout. Lots of sit, stand, walk, stand, sit. Repeat. I should have great legs this bikini season. Silver lining I suppose? As they sing in The Life of Brian, "Always look on the bright side of life ...(whistling)."
So, back to Mr. James. These new seizures suck, plain and simple. I thought we were on our way to seizure free or maybe 1-2 a month and then wham! Slapped in the face. There appeared to be no reason for the sudden onset. His diet remained the same. His ketones were moderate to large, perfect for his diet. He was sleeping great, well, until it was interrupted by this unexpected arrival of seizures. No rash. No fever. No fussiness. Everything seemed normal (I do a little silly laugh every time I refer to our life as "normal").
The clusters continued for about a week and then James stopped eating. Then, a day or two later, he stopped drinking. No eating or drinking means no seizure meds getting in. The next day he just slept. Then his O2 sats started to drop.Then, we were admitted to Floating.
Upon our arrival to the ER, they started an IV (regular saline only. No Dextrose - diet rules, ya know), checked vital signs, and took a chest x-ray. The doctor came into our room and said "James has pneumonia." To which Mike and I responded with "Phew! It's just pneumonia." I think that doctor thought we were nuts. How many parents say "Just pneumonia"? In our minds though, pneumonia is an answer. And it's an answer with a cure! It was also an answer for his new seizures. Hooray pneumonia!??!?
James was admitted to the pediatric floor and started on some antibiotics. Unfortunately, this plan changed the next morning. The pneumonia and the cluster seizures were working against each other and poor James was stuck in a Catch 22. The pneumonia caused more seizures. The seizures required emergency medicine such as Diazepam or Ativan to break them. The emergency meds sedated him which decreased his lung function. Decreased lung function caused atelectasis, his lungs to stick together. And THAT landed us in the ICU and James on a C-Pap machine.
So much for "just" pneumonia, right?
The C-Pap, loads of antibiotics, and steroids did the trick and fixed that pneumonia AND the seizures! We moved from the ICU back to the pedi floor and, by the end of that week, we were home. James had a few days remaining of his antibiotics so we wrapped those up and boy was he looking good!
Breathing great and seizure free.
Beautiful.
3 days.
3 quiet days and then they were back...
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