Friday, January 23, 2009

Baby steps

The seizures continue unabated. In fact, she's been throwing in tonic/clonics on top of her usual pattern. The last few days have been especially hard on her, particularly in the evenings. Whether it's from the cold weather or not (yup, it got below freezing overnight on three consecutive nights!), I can't be too sure. We've made some significant changes to her diet and some meds, so compounded with all of that, it could be anything. Any way we do things, though, she continues to seize.

Our biggest change was to her diet. I got it into my head that maybe she is allergic to her soy formula and a milk ingredient in another supplement. I temporarily blamed the mucous buildup on a suspected allergy. We ended up getting her blood drawn to rule out any common allergies only to get the all-clear on everything!

While we were waiting on the lab results, our alternative to the soy was to feed her baby food (duh! why didn't I think of that?!). She's been strictly on formula since the day she got her g-tube that it never occurred to me that I could put any FOOD down the tube! Since two Fridays ago, her menus are half baby food and half fats. 

Now, the good news is....(drumroll please)...she is eating some of the food by mouth!!! I thought it would be nice for her to have a taste or two of some sweets, so we've been trying to feed her the fruit portion of at least one of her meals each day. The first day I tried it with her, I was ecstatic :) I honestly thought she had completely forgotten how to eat and swallow, so I was in for a big surprise. She might manage about a half teaspoon of a fruit per day, but at least she is getting some positive (and rather tasty) stimulation in her mouth! 

Other than that, everything else remains the same. T kicked butt at his basketball game again today. He's quite an athlete! E is busy selling Girl Scout cookies and kicking butt academically :) They're such good kids!

Monday, January 12, 2009

Seizures, seizures, and MORE seizures

So the seizures are back with a vengeance. What else is new. This time, I have no clue why they are so bad. The only changes to her daily diet/routine were the addition of a probiotic (suggested by her paed) and a new multivitamin. I called the company who makes the probiotic to make sure there weren't any added carbs and they assured me there is nothing aside from what is listed on the bottle. Today was the first day I gave her the vitamin, so that can't be the problem. She's been seizing like this for days.

I also had a lengthy discussion with one of the GI nurses about the amount of mucous in her tummy. She is puzzled about it, but at least she offered up some potential reasons. It could be that some of her meds are contradicting each other and creating a "gelatinous blob" in her belly (for lack of a better description). It could be because her secretions are increasing and somehow contributing to the problem (I forget how). It could be from scar tissue around the g-tube inside her belly that restricts the formula (another long reason I can't remember in detail). Great memory, huh?! :)  We hung up the phone agreeing that I would get in touch with her pharmacist to discuss the potential medication issues and go from there. I don't see any cut and dry answer, so anyone's guess is as good as mine.

I'm having another issue with the insurance company :/  They are arguing charges for her wheelchair seat that they previously approved. What kind of idiotic company approves a wheelchair frame but not the seat?! They will do anything they can to avoid paying for it, claiming it is a custom seat (it is, but that is because of her scoliosis and complete lack of tone). Mind you, this is from JUNE of last year! Unbelievable. So, not only do I get to battle these awful seizures, I now have to begin what will probably be a long and painful fight with the insurance company. It seems that the company who I am dealing with (the wheelchair company), sees this often from all kinds of insurance companies. It is unnerving, unnecessary, and UNBELIEVABLE! I had plans to purchase additional durable medical equipment that she also needs, but now I know how much of a problem I will get when I need them to step up to the plate. This sucks!

We are also still waiting on the completion of the house. We're getting there, but each day I get more and more antsy about our move-in date. Fingers crossed it's sooner rather than later...!

Another great start to another new year :( 

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?? ;)

Friday, January 2, 2009

What gives with this time of the year??

It seems now that our little princess might have a urinary tract infection. This is almost identical to last year's ailments. While her seizures are still okay, she's had a couple more large clusters that are a bit out of the ordinary. Today, when I checked her urine stick, it showed moderate traces of blood, small nitrites, and small leukocytes. After a lengthy message with Jade's nurse practitioner (her pediatrician is on vacation until Monday), she immediately decided to prescribe Bactrim in case it is an infection. Her urine stick is generally a good indicator of this. Thank god I don't have to bag her or take her for a catheter draw. That would have been the icing on the cake!

So, we will wait and see if this clears things up. It will be nice once this dreaded holiday season is all done so we don't have to deal with missing doctors, closed clinics, and idiotic staff (Apria). By the way, a rep from Apria called and said it was the insurance company's error. Go figure. That's what they told me the last time this happened. Yeah, right! Regardless, she got her supply about an hour ago, so that should hold us until the next time they screw up! :)

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.

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