Tuesday, October 14, 2008

Doctor appointment update

Jade went for her quarterly checkup today to meet with the Ketogenic team. After countless needle sticks for a blood draw (not once did she flinch or cry out, even while the nurse dug for veins on several occasions), we were finally successful in pulling her blood. I feel so awful for her when she presents as such a hard stick. It is incredibly painful to have someone dig around for a vein. I wish I could reward her with a sweet treat for being such a trooper. :(

As for her diet, no modifications were made. She gained 2 pounds since September! She's around 40 inches or so, and weighs about 42 pounds. Not such a lightweight anymore! Her initial labs came back good, so that is a relief. Hopefully the rest will be good too.

I spoke at length with the doctor about coming up with a new plan of action for her. She is basically seizing around the clock these days. I realize part of this is because of her ear infection (which, by the way is hopefully clearing up). We also realized that her seizures have increased A LOT since we upped her Keppra dose back in September.

So, here's the plan: once her ear infection clears, we will lower her Keppra back to its maintenance dose. This should take about 3-4 weeks to do. At the same time, we will be increasing her Zonegran levels to 100mg twice a day. We were never sure if the Zonegran made an impact after it was initiated. At the same time, a couple of changes were made to her diet and she was recovering from an illness that required antibiotics. So, after about a full month on the increased Zonegran, we will hopefully have an idea as to whether or not it is really beneficial.

Plan B is a little more complicated. We have a few other potential medication options. Lyrica is on the table, so is Felbatol, Depakote, and Clobazam. However, Lyrica was nixed by her neuro in January this year already. He stated it wouldn't be effective in helping her. I plan on reintroducing this drug idea to him when we see him in March. Felbatol is a black box drug, meaning that it has a very severe and fatal side effect called aplastic anemia. Parents are even required to sign a waiver stating they are aware of the potential side effects. However, this particular drug has proven very effective for controlling seizures in persons with refractory epilepsy. Depakote can cause liver problems, and she would potentially have to come off of the diet to start that one (fat chance!). Clobazam seems to have proven pretty effective with some of the cdkl5 children, but this is not FDA approved. Liver toxicity is its reason for not gaining US approval. But, there may be a small chance she can replace her Klonopin with this, if I can persuade her neuro to do so.

So, considering my alternatives, I ask you: What the hell would you do?!

1 comment:

Katie said...

I say you wait and see what happens with the Keppra, but I want to know - what was the real reason the doc gave for nixing Lyrica? And about Depakote - I think you were against this before, but why would she have to go off the diet? Has the doc said anything about going off the diet?

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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