Friday, February 20, 2009

What would our year be like without a vacation at Shands?

Alrighty, here's the story...  

As most of you know, Jade's been having more seizure activity than we are used to seeing. After phoning neurology early Tuesday morning for some guidance, we were told to go to the local ER to assess her. The previous night, she was seizing no less than every ten minutes for 3-4 hours straight. I thought they were tonic-clonics, but I was later told they were not.  

We took her to the local hospital, had a bowel xray (since she hasn't been as regular as usual), and had labs drawn (I brought her in fasting). Both results were fine, and in the 5-6 hours we were there, she didn't seize ONE TIME! So, they sent us home with instructions to use Diastat when needed. We ended up using it that evening.  

We were scheduled for a regular clinic visit Thursday with her primary neuro. Needless to say, she had no less than 5 seizures in front of the staff in the 30-40 minutes of the appt. After discussing options, it was decided that after three years of being on the diet, it was likely no longer benefiting Jade. We had yet to try Depakote and her neuro mentioned this is the drug of choice for Rett girls (I have read this in previous posts). He said if it were up to him, he would admit her immediately and wean her from the diet within a week.  

So, here we are, weaning the diet, and she is completely doped up on Phenobarb. Their plan is to have her on regular fluids/foods by Tuesday and to start the Depakote around that time. They say it is not safe to take Depakote while on the diet. I have not known what to do for such a long time now, that it was a little bit of a relief for someone to make a decision. I am not happy that she will be on FIVE drugs upon our return home, but we can't take them all away at once without dire consequences. I think that ultimately, she will be weaned from her Keppra, the pheno, and possibly the Zonegran. We will have to return in 6 weeks from our discharge for further direction.  

I am told that we will be here no less than 5-7 days. I don't see it being less than 7. It won't be until Tuesday that they consider giving the Depakote and they need to see how she will respond to it. Her attending today said he spoke with the neuro we met with on Thursday and they compared past and present EEGs. Since last year, her EEG hasn't changed, only her visible seizure activity has. All the more reason to nix the diet, since we have tweaked it so many different ways during that time, with no real success.  

On the one hand, it was fortunate that we stayed for her admission on Thursday. She ended up having a 20-30 minute seizure not too long after getting her settled. They were just preparing to insert an IV when she began seizing. No time like the present, huh?!  

She's been sleeping the entire time. At least her noticeable seizures are way down. What I don't like is that she is not emptying her bowels, and they had to cath her this morning because she went almost 12 hours without a wet diaper. At least she's peed since then. The best part of my stay (if there is a best part), is that I have a private room! I had to share last night and my roommates had the tv and lights on well past 4 a.m. I just don't get it. She's all decked out in her "skull cap", pink IV board wrap, and she gets a luxurious Tempur-Pedic mattress! No wonder she's been sleeping the whole time :)

And, of course, we plan to move into our house the week after next. Let the saga go on...


Katie said...

URGH. Best of luck to you and Jade in Gainesville. xoxo Jade :)

Call me if you need anything Kay!

Brooklyn and Kelly said...

Tahnks for the update - I wish it were better news! Hang in there and give Jade a big hug from me and Brooklyn! Lots of Love to you both!

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