Friday, January 9, 2009

Another day in the life of J...

It turns out that she didn't have a UTI after all. No surprise there, I suppose. So, she is off the Bactrim as of tonight. Her pediatrician recommended starting her on a probiotic, which I have pondered doing in the past. Previously, I looked into a couple of brands labeled for children, but they are not Keto-friendly. No surprise there either. So, off to the health store tomorrow to see if they can recommend something a little more pure.

We also talked about the excessive amount of mucous she has coming out of her g-tube. He surmised it was allergy related, but I'm stumped as to why it happens all year round. If the probiotic doesn't help clear things up, then he wants her to try Cingulair. We'll see. Last thing I want to do is add another drug to her increasing medication list, but if it helps, then great. I am almost positive that the excess mucous is causing a lot of her seizure activity. It seems to clog her g-tube, most likely causing discomfort or reflux. For all I know, these "seizures" could be reflux! Whatever they are, they are happening too much for my liking and they are wearing her out. She's even been seizing during the night, which hasn't happened in a while. 

The stomach virus she caught seems to be gone, so now we are back to a bit of constipation. I lowered her diet ratio while she was sick, hoping the lower amount of oil would help alleviate the mucous and tummy discomfort. I am loathe to put her back at the high level she was on before, so I hope this ratio works out. She has an appointment in February with the Keto staff and her neuro. I plan on talking to them about potentially lowering the diet more. At this point, I would be almost willing to take her off of it. I would love for her to experiment with flavors in her mouth and not worry about meds with too many carbs. On the flip side, I need to investigate a more natural approach to her diet because I am pretty confident that gut issues are the cause of a lot of her troubles. I know my gut wreaks havoc on my system, so why wouldn't it be the source of her discomfort?

Oh yeah! CONGRATULATIONS FLORIDA GATORS for winning the National Championship AGAIN!! GO GATORS!!! It can't hurt that she gets her care at this school now, does it?? ;)

No comments:

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.

Friends who follow this blog