Friday, November 7, 2008

What more can I do?

So, over the weekend, I came to the agonizing decision to put Jade on Felbatol. For those of you familiar with it, I am sure you know how difficult it is to come to such a decision. For those of you who are not familiar with it, it has severe and sometimes fatal side effects. Patients/parents are even required to sign a waiver to have it prescribed. You must now realize what we've been up against. We have seen so many seizures over the past few weeks and months, that it was time to do something, anything. Thus, Felbatol.

Of course, I call first thing on Monday morning and explain my decision to nurse number one. I tell her that I want to place Jade on the Felbatol, but decrease and/or wean the other three drugs she is currently taking. Nurse says okay, let me talk to the doctor and I will get back with you. In the meantime, plan on coming up here on Thursday a.m. to sign the waiver. Great, okay.

I hear nothing on Tuesday and figure things are as we spoke about on Monday. But, you never know.

So Wednesday rolls around. I at least want to confirm this tentative appointment since our drive is two hours each way. The end of the work day comes around, so I call the after hours service and ask to speak to the neurologist on call. I was intent on having Jade admitted because she had yet another round of harsh seizure activity and, you guessed it, something needed to be done.

I get on the line with nurse number two. She tells me, sorry, but doc absolutely will not prescribe Felbatol because of its side effects. ??!! I was floored. This, after our October visit where we discussed at length the pros and cons of the drug with another neuro in the practice, and where I was led to believe we shouldn't have a problem getting it for her? Confusing to say the least. She tells me that if it is something we feel strongly about, then we should come speak to the neuro and find out why.

I know he is a conservative doc, and a very intelligent man, but wow, I was thrown for a loop! After a pretty lengthy discussion between us adults, we decided that there was no point in driving all the way up there to hear the same thing we heard the night before.

So, now we are left with increasing her Zonegran. Zip, zero, zilch. The fat lady has sung. Finis, finito, done. We are out of options. All I can say is, wish her luck with the Zonegran. So far, she is lacking the lucky charm :(

1 comment:

Brooklyn said...

Awww man - poor sweet thing. We hope things start getting better SOON! Big Hugs!!

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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