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Thursday, April 29, 2010



We've decided to go ahead with it. Yes, it's a very strong seizure drug and, yes, it's biggest and most serious side effect is possible tunnel vision, but this is a game of "would you rather." And we get to play it. Awesome.

I'm pretty sure my friend, Jenny, coined the phrase. It's like we're always playing a game of "would you rather." And this time our topic is "Would you rather have a child that could possibly loose some of his vision OR suffer from serious infantile spasms that could delay progress, cause even more damage, and/or cause regression?"

I think we'll take our chances with the vision.

Besides, I've received many supportive emails from other Mama Bear friends who've told me about their bear cubs taking Vigabatrin. Nobody reported any vision side effects. Of course, most of our baby bears are already compromised in ability so it's hard to tell. (And I am so appreciative for all of your advice, support, emails, and comments. I am totally not alone in this and there are, unfortunately, more members in this club than I imagined.)

I spoke to both neurologists that I'm dealing with (long story full of details that are unimportant), and after weighing all the options, Vigabatrin seems to be the best bet. See, Infantile Spasms is serious. It's treated as an "acute condition" according to one of the neuros. We are choosing Vigabatrin first because we will know right away whether it works or not. Cool. No drawn out titrating of meds to see what levels effect him and when. Let's just get on with it, shall we?

And, if Vigabatrin isn't our deal, then we're gonna get all Keto up in here. Ketogenic diet, that is. One of the neuros actually suggested it and I have this nagging feeling that if Vigabatrin isn't our friend, Keto will be.

We start Vigabatrin tomorrow.

And, for the record, I've weaned Christian completely off of Keppra over the last month or so without the neuro's blessing because of that darn nagging gut feeling telling me at the very least it wasn't working. Even more so, I had that same nagging feeling that it may be causing these things. His jerks, spasms, seizure-like activity is down, mmmm....about 75%.

The neuro actually suggested that this recent EEG may have been so disorganized because I had decreased his Keppra and Keppra is known to cause such dramatic changes in EEG's. I politely told him that I purposely did NOT start reducing his Keppra until after the 24 EEG was completed because I knew it would effect the EEG. I'm not stupid. In fact, during his 24 EEG, he was on twice the amount of Keppra as he was for the previous EEG. I'm no expert but that nagging feeling leads me to infer that knowing Keppra causes distortion in an EEG and knowing Christian was on twice the amount...maybe Keppra caused the distortion on Christian's EEG? Just sayin'.

So much for not getting into details.

The other matter the neuro raised was that he basically didn't want me second guessing his prescriptions, advice, etc. In so many words. At first, I took this as meaning he didn't want me to consult with another neuro for fear that I would hop back and forth depending on who gave me the answer I wanted. Fair enough.

But now that I've thought about it...I think he meant that he didn't want me second guessing him. Not with another neuro but with me as Christian's decision maker. This should be interesting because what he'll need to realize is that no matter what he advises, it is ultimately my decision as Christian's mother, our decision as Christian's family. That is non-negotiable.

We'll be consulting again in a month and we'll see how it goes. This relationship may or may not last, but I'm willing to enter into a little team work for the sake of kicking some seizure butt.

Dear God,

Please let this medication help and not harm.

Please just let it work.



Alicia said...

I second your prayer. I pray that this is the answer for Christian.

You absolutely are making the right decision to go ahead with the med. There is always going to be the game of "would you rather". There are always going to be possible negatives that go hand in hand with the possible positives. You did your homework and balanced pros & cons. Mama Bear has done her due diligence.

And, it sounds like the neuro is going to get a rude awakening if he thinks you are just going to say "yes sir!" to everything he says without researching and giving it a lot of thought first. No one knows your Christian better than you. That makes you the LAST word on his care. Period.

You all are constantly in my prayers. Have a great weekend!

Jenn said...

Just wanted to say that I know of a really good neuro in Phoenix if you need another referral if this one doesn't work out. Not that Phoenix would be the best choice for you because of the drive and all.


sunflourchic said...

Our prayers are with you that it works. You are the best Mama Bear I know.

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