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Sunday, October 23, 2011

Weaning Keppra: And other scary stories.

As we near then end of the Keppra weaning process, my anxiety mounts once again.  I'm posting this with the hope that 5 minutes, 5 days, 5 years from now when a mom is looking for ANY sort of information about the weaning process, she may somehow come across this blog and know that someone, somewhere has "been there."  It's so hard to find REAL information about seizures and the pain they cause because everything you read on medical sites is so sterile.  It doesn't give you any idea of the physical and emotional toll that living with seizures can present.

I think the most difficult thing about seizures is that they are so unpredictable.  Obviously the first one a person has is not going to be expected, but even a repeat episode can come with little to no warning.  It's such an "out of control" feeling.  I have never felt more helpless as when my son's body was jerking uncontrollably.  Doctors and nurses were whirling around our heads, giving medications, giving orders, and saying what I would eventually learn is the mantra for seizures, "we just don't know."   This initial shock to the system is also when one learns how to live with a constant knot in the pit of your stomach.

Unfortunately, it doesn't get easier from there because now you get to play the medication titration game.  They try all kinds of different combinations and cocktails of medications, all with the express purpose of shutting the brain down.  You then see the seizures start to subside, but you also see your child slip further and further away from you.  So, you tell me what I'm supposed to hope for at that point.  Do you hope that the meds work and the seizures stop only to realize that your child is now an unrecognizable shell of his former self?  I thought that weaning would be less stressful because we'd be getting rid of the awful drugs that make him so sleepy and lethargic.  Of course,  it's not easier.  In fact, I feel as anxious bringing him off of a medication as I did when we were adding them. The actual act of weaning makes him anxious and cranky and twitchy.  He physically can't stop moving long enough to fall asleep even though he's exhausted.  It breaks my heart every time he looks at me as if to say, "What is wrong with me?  Why do I feel like this?" I'm his mom, his comfort, and I can't give him an answer.  I can't take away his pain.

We have moved from three medications, phenobarbitol, topamax, and keppra down to just one.  Tonight is the last dose of Keppra, and the knot in the pit of my stomach has returned full force.   The questions play over and over in my mind:  What if I'm doing the wrong thing?  What if he actually needs this medication?  What if we make it all the way to the end and he seizes again?  What if we get rid of the thing that we think is holding him back only to find out that this was as far as he was ever going to go?  What if the jerking movements continue even in the absence of the medication?  He has made so much progress and we are grateful for every single thing he does all day long, but that doesn't mean that we stop hoping for him.  We haven't stopped dreaming that one day we'll get to chase him through the park, or watch him get his first hit in tball. 

Sometimes I feel like we are jumping out of an airplane, and we have a parachute, but it's only a picture of one.  It's like we are able to see what safety and security look like, we just aren't allowed to actually have them. So, tonight, as I give the "last" dose of medication I will be both excited and terrified.  And, parachute or not, we've got to make the jump.

Monday, October 17, 2011

My Re-Initiation into Womanhood

I have been pregnant and/or breastfeeding for over 8 years now.  This little tidbit of information is important to note as my most recent revelation has to do with something that is old and familiar but in an odd way, sort of new and pretty annoying...my period.  Now, 99% of the men reading this blog have already turned their computers off by way of dropping it on the floor in horror.  This is something I've never understood.  I mean, simply reading this blog does NOT mean that you are going to get anything ON you.  The male reaction to the word tampon is also ridiculous.  Why is it that at the mere mention of that word, they snarl their lip and back away as quickly as possible?  Here is the thing boys, we don't purchase them used.  I'm sure that, by now, any man with enough kahunas to continue reading after the word "period" has officially logged off as the buzzing in their ears has now given way to lightheadedness.  Why is that?  Why is this such a big deal?  Maybe this is my nursing background coming to light, but I just don't see why we have to get all hush, hush and freaked out about it.  I mean, to me, we're just talking about body parts, and I've never seen anyone get all twitchy over an elbow.  Knowledge is power people, just ask questions.

But, I digress.  The real reason I've been so overwhelmed by this subject is that I've actually had to deal with it lately! Eight years is quite the hiatus after all, an apparently there are a lot of "new" annoyances associated with periods that I know were not there when I was in my early teens. This must be the new and "improved" version.  Anyway, it is extremely annoying to workout everyday, eat right, and finally start feeling good about yourself only to be blindsided by an animalistic need to devour 8,000 calories in the next 5 minutes.  This is NOT a joke, men.  It is NOT a "craving" as that implies that someone simply WANTS to eat a specific forbidden food.  I am talking about the fact that I would have chewed off my own right arm to have a plate of nachos the other day.  And, don't even get me started on the fatigue.  Holy crap!  This is worse than pregnancy.  My husband tried to tell me the other night that he was "tired."  This seems like a harmless statement, but not when you're saying it to a woman who is re-learning what it means to have to pick your eyelids up of the floor.

And perhaps, just perhaps I may be a little more moody than I remember???  I'm sure that my darling husband would disagree or at least he would have until a few days ago when he said one of the dumbest things I've ever heard spill from his lips (and that's no easy feat).  I was nursing our son, and he was reading the paper.  First of all, how nice would it be to get to sit in a chair by yourself and actually READ something while children are awake?  Anyway, he says (without even looking up from the paper), "You know, son, when you're 2 we're cutting you off."  Once the smoke coming from my ears cleared the room, I believe my rant went something like this:

"Oh, wasn't that interesting, Easton?  Wasn't it amazing to hear such a unilateral decision made by someone whose boob is NOT in your mouth? I mean, you would have thought that HE was the one getting up with you 3-6 times every night for the past year.  And HE must have been the one pumping every three hours when you were sick, bawling his eyes out wondering if the milk he was working so hard to preserve was ever going to be given to you?  He must be the guy that's working with you every day, at least 5 times a day trying to teach you to drink from a sippy cup while juice spills all over his arms and frustration threatens to send him heaving the cup through the kitchen window!"

I think he got the point.