I know, I know. You can all laugh at me for complaining about the "cold" weather! Hey, when it's 50 degrees during the day in Florida, it's no laughing matter! We had to cover our plants :) Seriously, I'm sitting here wrapped in my big fluffy robe because I'm freezing. So much for growing up in the Arctic Tundra up north! I'm officially a Floridian.
I wish I had something different, yet good, to post about Jade. She's not gotten any better with our new drug concoction, just sleepier and more constipated. Just call me the enema queen! I made a diet adjustment to see if that might help. I lowered her diet ratio, because that's one of the hundreds of reasons she's backed up. I'm sure I will get reprimanded by her dietician. Such is life. All the increased Klonopin has done was dope her up more. It may have lessened the intensity of some of her clusters, but not what our dear docs think it should have done. Now, I'm waiting for the dietician to call to answer a few questions. Tick tock, tick tock.
Our little drool bunny still has her tooth. She's just managed to push it far out and make it really loose in a back and forth motion. Not in a "let's pull it out" way. I think she's managed to make it so she doesn't bear down on it as much as she was. Knock on wood...
She's still seizing quite regularly through the night. I don't get up anymore with each seizure. I physically can't do it. I just pray that she makes it through each night no worse than the last. What bugs me most about her current dilemma is her lack of any sort of activity whatsoever. For those of you who know her and have met her, you know how much of a wiggler she was. She doesn't move, period. That's how powerful the drugs are, and that's how severe the seizures are (they drain her of energy). We're waiting for her to power through this bad cycle and wake up again. The last time she was like this, it took putting her on the Keto diet and removing the Topamax and Klonopin from her drug regime. I decided yesterday that I may start moving backwards in her treatment to get back to where she used to be. Her seizures were bad then, but nothing like right now. Maybe if we revisit the past and her better days, we'll come up with a solution??? I'm fresh out of other ideas if anyone has any suggestions!
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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