She's still going strong and we're at a crossroads in terms of what meds we want to use or wean. We haven't used the Klonopin for two days now and she is a bit (just a bit) more alert and interactive. She's still seizing like crazy, but I just couldn't stand seeing her be so "droopy". I remember the Klonopin's side effects being the same over a year ago and I swore I would never add it to her drug regimen regularly again. Now, I know why. Giving it to her over the last week hasn't really made any difference in decreasing seizures anyway. We discussed giving her Diastat at bedtime tonight to see if it will help her sleep better and maybe have less seizures (and to potentially offer us some well needed rest). Once again, I am nervous to use it and might only give half the dose if given at all.
Poor thing is so constipated too. I think it's from the combination of sedating drugs and because of the increase to her diet ratio. I am pretty sure I will be looking at decreasing the ratio again to see if that helps relieve her. I can only stomach giving so many enemas...
Thanks to everyone for your posts. I'm glad people are reading the blog (should I be??!) :). Anyway, it also serves to guide me in decisions concerning her because I can barely remember yesterday, let alone two or three years ago. Thank god I chronicled her story on the other website ( http://www.kidsepilepsy.com/ ) when she first started seizing. It's made a difference in knowing which path to follow.
I also want to thank my dear friends from my Yahoo support group. Without their input, advice, general well wishes, and past experiences, I would be at the bottom of a deep deep pit. These women provide the hope and strength I so desperately need at times like this. Special thanks also to Leita who is such a guiding force in our group.
On a different note, our weekend was filled with fun and friends! Our nanny is now getting settled in and the kids are already torturing her! :) We had a great time last night catching up with our friends from North Carolina and the boys were breathing a big sigh of relief at the end of the Patriots game. (I, on the other hand, am shedding tears after today's embarrassing Steelers/Ravens loss...) :(
Little is known about CDKL5. I am hoping by creating this blog, word will get out and parents will communicate more if their child(ren) have been diagnosed with this mutation. It is a devastating neurological condition causing a variety of problems, intractable epilepsy being one of the primary signs. Welcome to our blog...
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Our peanut in a nutshell...
Hi everyone! Thanks for visiting my blog. My name is Jade and I am currently 8 years old. I have a big sister and a big brother whom I love very very much.
I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.
Some of the problems I face include:
Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.
I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.
I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.
I cannot talk nor communicate with gestures.
I cannot walk, nor will I ever walk.
I grind my teeth. So much so, that some loosen during seizures.
I cannot grasp objects or use my hands for the simplest of tasks.
I cannot sit on my own. I can, however, sort of roll over from side to side.
I am choreoathetoid. I cannot control the jerky movements my arms and legs make.
I have life-threatening seizures every day. This is my greatest challenge.
So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.
I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.
Some of the problems I face include:
Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.
I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.
I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.
I cannot talk nor communicate with gestures.
I cannot walk, nor will I ever walk.
I grind my teeth. So much so, that some loosen during seizures.
I cannot grasp objects or use my hands for the simplest of tasks.
I cannot sit on my own. I can, however, sort of roll over from side to side.
I am choreoathetoid. I cannot control the jerky movements my arms and legs make.
I have life-threatening seizures every day. This is my greatest challenge.
So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.
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