I Hate It When I’m Wrong

I can admit when I’m wrong. Only because it happens so rarely. I mean, everyone knows I’m like the next Mary Poppins – practically perfect in every way. (Stop snickering or I’ll beat you with my umbrella)

Well, yesterday I was wrong, not once, but twice. I KNOW! Mark the day on your calendar because it will never happen again.

V eeg 3 300x225 I Hate It When Im Wrong

Vista at the start of yesterday's EEG

I publicly stated that I was sure that the EEG we had slated for Vista yesterday would come back as normal. Same as the other two had. I mean, for one of those, they had her hooked up for 24 hours and it was perfectly normal. Why would I have any reason to believe they’d see anything different on a half hour EEG? Especially since we weren’t able to get her to sleep during it, like they needed. All that sleep deprivation for nothing.  Can we say cranky? (Me, not her).

But… wait for it….I was wrong. What little bit of the EEG they were able to do came back abnormal, showing spikes of electrical activity coming from the back of her brain.

I’m pretty sure my jaw made a nice clunking sound as it hit the floor when her neurologist told me.

To say I was not expecting that is an understatement.

Which led to being wrong a second time in one day.

I was positive that we’d get the nice shrug from the neurologist accompanied by the words ‘Welllll… we don’t know.  Call us if her seizures get any worse”, as they sent us home again.

I got the first part right.  Does that count?

They used words like ‘odd’ and ‘unique’ to describe V’s seizures.  Yeah, my kid’s all sorts of special.  But I already knew that.

What they think is happening is Vista will have a seizure, which causes loss of speech, motor skills, and behavioral issues.  Then two to four weeks later she’s having another seizure that resets whatever the first seizure did and returns her to back to where she was before the first seizure. Did you follow that?  Let me put it in simple terms.  It’s like flipping a light switch on and off. And on. And off. And on.  And off…and…yeah, well, you get the point.

The problem is, we’re lucky if we see maybe a third of the seizures we think she’s having (which is why it’s taken so long to puzzle this out), because they happen at night, while she’s sleeping.  Which could be why she wakes up in the middle of the night screaming sometimes.  Ever wondered what a banshee sounds like?  Come for a sleepover.

At any rate…

The abnormal EEG combined with the level of regression from her last seizure had her neurologist concerned.  Very concerned.  Concerned enough that, for now, they’ve decided to put her on anti-seizure meds.

Luckily the medication they chose (clobazam) has fairly mild side effect.  Stuff like ataxia, somnolence, diplopia, and dysarthria. Don’t those sound scary? Let me translate: loss of muscle coordination, drowsiness, double vision, and slurred speech. So, in other words, she might act like a teenager on a bender. Yay.

The best part is, they told me this drug is part of the benzodiazepine family. Also know as? Anyone?
That’s right, my two year old is on Valium! I’m thinking we’ll try for Xanax by the time she’s three.

 I Hate It When Im Wrong
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18 Responses to I Hate It When I’m Wrong

  • I’m so glad that you’re finally getting some answers Jenn.

    Even when she’s cranky, Vista is a little doll.
    .-= Maria @BOREDmommy´s last blog ..Wordless Wednesday – Babylicious =-.

  • Merry120 says:

    Well it sounds like one time when being wrong is a good thing! At least now they know what’s going so they can figure out how to treat it.
    .-= Merry120´s last blog ..What’s Cooking Wednesday – Cheese Puffs =-.

  • I hope this first med works for you. We have had great success with seizure meds and while we had to tinker with the dosing, they have worked. Wishing you lots of luck and positive thoughts!
    .-= Kim @ Beautiful Wreck´s last blog ..Ordinary Fear =-.

  • Ange says:

    Hope the new medication helps your beautiful princess!

  • I hope this med helps V! Noah had major regression at 4. It was so scary. He eventually started gaining skills again, but is still very behind. I wish there was a guide book for the “right” thing to do with these issues, but it’s all play it by ear. Side effects are scary, my nephew has been on anti seizure meds since he was 4 days old and has managed to avoid the side effect. I hope the same for her.

  • Heather says:

    Do not give in to the guilt. It’s not worth it. You’ve done all you can do.

    Also, don’t think about the meds. Sometimes it’s better to just read the little pamphlet from the pharmacy and not investigate any further (this comes from the nurse, who has, from time to time, cornered the pharmacist…ahem).

    It’s all going to start to get worked out. She’s a strong kiddo…and you’re an even stronger momma. chin up!

    xooxo
    .-= Heather´s last blog ..Giveaways Make Tuesday Better! =-.

  • Lisa says:

    Answers are a good thing. Hopefully the meds help Vista. Thinking of you guys and sending love and hugs.
    .-= Lisa´s last blog ..Remembering Layla Grace =-.

  • jenn says:

    I’m so sorry you have to go through this, I’m sorry Vista has to go through this!! I’m glad you have some answers, that has to relieve SOME of the frustration, though I know there is a ton of frustration left! hugs babe and hug that beautiful baby girl for me!
    .-= jenn´s last blog ..Wordless Wednesday =-.

  • oh sweetie… i could feel your angst in your tweets last night, just figuring out how to give V her medicine. while i am grateful that you have SOME answers, i (as you know) can so relate to the frustration of not knowing ENTIRELY what is going on with your child… and you think you know… you know you know… and at times, you know that THEY know NOTHING. and dammit it sucks and stings when you’re wrong… sort of wrong.

    i love you.
    .-= nic @mybottlesup´s last blog ..house rules =-.

  • Jenn says:

    Good luck Vista!

  • Oh man. I”m praying this is the start of problems solved and things going better for y’all and Vista. Hugs
    .-= Becky @TheRealBecks´s last blog ..For Layla Grace =-.

  • I would never say you were wrong – you’re her mother and you always know best. But sometimes, things are not the way they seem and it sounds as if though the fact that these seizures are so hard to detect are part of that reason. The fact that you noticed the regression in her speech is where you were absolutely right and brought her for evaluation is what makes you a great parent, because if you weren’t paying attention or spending time with her loving her and caring for her, you’d never have known she was having them. So, give yourself credit for all the wonderful, awesome things that you do right for that beautiful girl of yours. That said, I can only imagine how hard it is to put your little one on medication, but it probably won’t be permanent. Maybe the seizures are the reason she was so restless and screaming at night – all that brain activity, so this might be the answer in getting her (and you) the rest she so badly needs. Thinking of you and that girl – she is indeed special in every way and she’s lucky to have you and Bil as parents. : ) xx
    .-= Tricia (irishsamom)´s last blog ..My Birthday Boy =-.

  • Kekibird says:

    Oh baby girl V….and big hugs to momma and Bil too. This is tough and no words can help but know I’m thinking of you both.
    .-= Kekibird´s last blog ..El Natural…GOOP Bath Salts =-.

  • I hope you get the answers you are seeking. I very much admire that you are able to retain your brilliant sense of humor through all of this which must be downright scary at times. With your perspective here, you are setting a wonderful example for all of us.

  • mel says:

    Jenn, I’m happy you are finally getting answers although just reading this makes me want to hug you. V is adorable and very lucky to have you.

  • Marcus says:

    I am a researcher of benzodiazepines and came upon your blog when conducting a Google news search. As a short background, I was prescribed a benzodiazepine to take when I was 14 years old indefinitely and it has hurt me greatly. But I wanted to focus on your issue. I am sure it is frustrating in an already frustrating situation to get advice from strangers. However, given my experiences, I feel I could help.

    You may want to ask your doctor about a less addictive medication. I am not claiming to be knowledgeable about what alternatives exist, but I can tell you what the problems with benzodiazepines are. It is extremely difficult to withdraw from benzodiazepines, and physical tolerance and dependence can form within 1-2 weeks of taking the medication. Its anticonvulsant effectiveness is often limited for this reason, as well. Rapid withdrawal will invariably lead to seizures (even in someone who doesn’t normally have seizures). You can read about benzodiazepines and benzodiazepine withdrawal syndrome from Wikipedia, or the greatest source is probably benzo.org.uk.

    In short, benzodiazepines modulate GABA receptors in the brain to have a greater affinity for available GABA. GABA is a neurotransmitter that inhibits the activity of excitatory neurotransmitters which is why it can work to alleviate seizures and anxiety. However, the brain very quickly tries to return to homeostasis by reducing the amount of available GABA. So you could kind of think of the GABA receptors as magnets that are made more powerful by the benzodiazepine, but to compensate, the brain makes less metal available to be pulled toward the magnet. This is why the body needs more and more medication to achieve the same effect. Withdrawal problems happen when you discontinue benzodiazepines because the “magnet” immediately loses its power, but it takes longer for the brain to compensate and increase production of “metal” (GABA).

    In my opinion, benzos are a great short term fix–but should not be used long term, and should always be tapered slowly. I just would hate for what happened to me to happen to anyone else’s child. I know I am not a doctor–but in my defense, the person who addicted me to benzodiazepines (and I never took more than was prescribed) was a doctor who specialized in those medications (a psychiatrist), and he was not knowledgeable about what he was doing.

  • Lu says:

    Damn. Well I hope the meds start to work and level it out so the switch stays on. I have been really thinking of you guys and this situation b/c my niece is having Petit Mal Seizures and they are just going to a nuero doc this week. V is one hell of a trooper and has two of the best parents fighting for her. You will figure this out. I just know it. Love you.
    .-= Lu´s last blog ..Extra, Extra Read All About Me! =-.

  • Holy crap, Jenn. Poor little, V. Sending love! Lots of love!
    .-= sam {temptingmama}´s last blog ..On Marriage, Mr. Right, and Wood. Heh. I Said Wood. =-.

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