Saturday, June 27, 2009

Russian Mountains


And so...just like that, I go from a positive post last night, to a negative post today. That's our ride, that's our life.

It's a goddamn roller coaster.

It's up it's down it's left it's right.

We were feeling pretty good after we got back from Cleveland Clinic, good enough to actually attempt, and SUCCEED, in going out as a family for the first time since this all started. That was Thursday night, we went out to eat and went to ToysRUs. This was a huge...HUGE deal for us. Some parents will understand that, some won't. But to pull the trigger AND JUST GET OUT OF THE HOUSE SEIZURES BE DAMNED was a giant step for us. Giant. I'm glad we did it.


We were even feeling very good last night, though Bennett did have a fairly long seizure cluster in the early part of the evening, the seizures themselves were manageable. But overall we sat, we talked, we laughed and played, and we planned to try this whole LET'S ALL GO OUT TOGETHER thing again for today, Saturday.

But remember when I talked about saturation in that post about how it derails anything Jen and I try to hold on to that is positive? Well, saturation is what we are dealing with at the moment. As of around 1 PM today, and he got up at around 7, he's had THREE sets of clusters. And they are very, very intense today.

Some days...it's just the head nodding and such, but other days it is like this.



Anyway, we only got around a minute in before Jen asked if we really needed to record this. I agreed and stopped the camera. This set was a bad one, you could really see it affecting him emotionally, and I am glad I stopped the video cause it got even worse as it went on. He rarely expresses discomfort in these. He was doing it today. And even though it is important to get some of that on record it is also important to turn off the devices and just focus on him. That's what we did.

He was doing something today I hadn't seen before too, which is why I had the camera out and ready...a sort of 'build-up' tremor that then exploded into the actual seizure itself. Then after the flex, he'd relax, the tremor would build-up again, then release. You probably cannot see it on the online version of the video. I can see it on mine, it's 680 by 480, but I think YouTube shrinks it.

The cluster lasted about 5 minutes, around 46-48 individual SEIZURES. I fucking will NOT call it a Spasm...sorry, I just won't. I won't call Cancer an abnormal cell growth either. I'm sick of us as a society trying to make the unpalatable taste acceptable. So that's 48 on this one, around 35 on the second one, and the first of the day was in the 70's.


So anyway, here we are, officially de-railed again for the day. Bennett is fast asleep, EXHAUSTED from three clusters so close together. Carter ends up in his playroom watching TV, Jen is doing her thing and I am doing my thing. Fragmented yet again, both physically and mentally. It's only, what...around 1:30? We might still salvage the day...might. But probably not, since we both feel like Grade A shit again.

Sucks. I've just got to hold on until we get the next testing round scheduled, hopefully less than two weeks. If his seizures start getting much worse though, I may have to insist that we not wait to start a new second Med trial. Clearly, the Vigabatrin is a total bust, wouldn't you say? The plan was, now that Keppra and Topamax are gone (mistake? maybe, who the FUCK knows?), to give Vig a chance to be by itself for the rest of the time between now and the tests.

But Jesus...it's rough to sit here and just watch him go through that.

Alright I'm done. For now. Maybe I'll try to clean something.

16 comments:

  1. I wanted to throw up watching Bennett,seriously throw up.That feeling,of watching a child endure that,be it my own or someone elses will never,ever go away.I agree,to call that a spasm is so far off.Way out of the ball park.Wish I had the words for you or the miracle for Bennett but I am so at a loss.Hoping the day can be recouped.Praying for a better direction on that freakn roller coaster ... I SO hate roller coasters.

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  2. That was absolutely heart wrenching to watch. My words cannot adequately express how it made me feel.

    You are so very articulate. Your blog yesterday recanting to the doctor your description of Bennett's "episodes" was a reflection of how perceptive you are, how sensitive to each nuance.

    But, I think until you see it, words just can't fully describe what those sezures are like. There are NO WORDS to capture that expression on his face. While it might not be so important to the medical world as other aspects of IS, to see the expession in your little boy's eyes and not feel incredible compassion...not just for Bennett but for those who love him as well.

    He just looks like he is so confused and asking for help. My heart goes out to you, Ken and Jen. I only wish there was something, as small as it may be, I could do for you.

    CB

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  3. I love you and I think about you all the time. Im always here if I can help.

    Jerry

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  4. Ok, no more watching the blinking cursor...It is so time you receive the help Bennett needs and deserves. I know you are both there for him.
    Awesome you got out yesterday and awesome you found a doctor....now is a good time to have one who takes this as personally as it sounds like he does.

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  5. Oh I am so sorry. I hate seeing that. I think Maddie's expression is similar. I agree, it totally sucks the fun out of the day to watch that keep happening. Hoping the new doctor comes up with a new plan soon.

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  6. Sorry. Poor Bennett. Poor Bennetts family. It's hard to watch. Emma also had tremors and spells of stiffening while sleeping as things progressed. I don't know what a "normal" progression is coming so late to IS just like you but I do know that things for us evolved very quickly in the months coming up to the surgery. I'm glad there is a doctor in the picture that you trust. That makes all the difference. Hang in there. I know I always say that and it seems pretty lame but it seems hanging in there is a good start.

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  7. I read your post the other day but didn't have a chance to comment. I wanted to because I was so excited, happy, over the moon that your trip went so incredibly well. So I came back to post a comment but then I read this post. It crushed me. I didn't think I could watch the video. But I did. It broke my heart. It opened up the flood gate of emotions. It was so hard to watch the look in his eyes and to know the hopelessness that you were feeling. I hate this roller coaster. HATE IT!!! I hope the process at CC moves quickly...it sounds like the doctor will make sure of that. But knowing that doesn't make today any easier.

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  8. When Trevy cries with his seizures...it kills me. Just kills me. When he doesn't cry...it still hurts. But it's not the same as the gasping for breath...crying...

    I'm so sorry, Ken.

    Vigabatrin gave us a couple of good days. But it seemed that each med increase...also increased the intensity of the seizures. And I couldn't wait to be rid of it.

    Although...now that we're on Topomax...and there are some studies indicating that Top & Vig are a good combo...can you believe that I'm actually contemplating asking our neuro if we can try adding Vig again? While we try to work out the insurance issues...

    Anyway...

    ...danielle

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  9. Heather:
    Yeah it is tough to watch, especially to those familiar with the condition and what it can do to the insides of our kid's heads.

    CB:
    Thanks...not entirely sure who this is actually, I know a couple of CB's. The first CB that comes to mind I don't think has ever posted here...but still, thanks for the support.

    Jer:
    Thanks dude.

    Richard:
    Yeah the blinking cursor is a real bitch, ain't it? :)

    Liz:
    Thanks, I hope you are on your way home as I type this and that things are on an upswing in your world for today.

    Sinead:
    Yeah but you say exactly what needs to be said, even if it is all you can say. So no worries. I hope Emma is doing well. When you get a chance you should update your blog or your thread. And pics please! Always love seeing pics of the kids.

    Elaine:
    Yeah I even apologized for that in one of the comments sections...I hated hitting everyone in the face after such an upbeat overall post on Friday. But you know how it goes...that's the ride we are on in these middle stages. Hope Sophie is doing great, it's getting close to the 30-day mark, yes?

    Danielle:
    I'm curious about something myself...he is now off Topamax, but I am afraid to, on my own, put it back in. But I am wondering if that was providing him more sz control overall.

    ON the other hand, I can't deny the strides Bennett has been making since reaching an ultra low dose of Top and Kep. With what he is learning I mean. And I don't know if that is Vig related.

    That is the truly sucky aspect...nobody knows WHAT the fuck is actually working/not working when you are messing about with polytherapy.

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  10. Brandon & Elaine will tell you who CB is. A silly old woman with a heart of never-ending care that sursprises so many. The one who would be disappointed if you ever stopped expressing yourself from your heart. You are one amazing fellow with a family who leaves me ??? spinning. I am a stranger who truly cares for Bennett and his family. CB

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  11. Agreed...it's all a guessing game. Although...a lot of parents claim increased cognition on Vig. Myself included...

    But really...who knows...

    ...danielle

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  12. Heartbreaking. Just like Danielle said, it's never easy to watch. Even when they're not upset about it. BUt, when they are (as Bennett obviously is in this vid), it takes every ounce of strength you can muster to just get through the cluster without a total breakdown.

    It kills me to see this. Although I've never met Bennett, or any of the other kiddos I follow...I love them all...ya know? It almost felt like I was watching Austin. I just wanted to cry and hug him...and fix it for him.

    Oh, and I did exactly what Danielle said. As horrible as the vig experience was with us...I did ask our epi about reintroducing it in combo with Topomax. He shot it down for the moment, but it's still in the back of my mind as an option. I gotta have those to keep me going...

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  13. Ken I wish you and your family the very best. I have two young daughters myself and can't even imagine how you feel watching your son go through this. You are a great father and you and yours deserve absolutely none of this heartache. Hopefully you and everyones well wishes for your son and family will come true.

    Tim

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  14. Hey...I cried with a breaking heart....I KNOW KNOW KNOW this feeling! The ups and downs are HORRIBLE...It is just CRUEL!

    I have often thought I'd rather just keep things like they are and never have those hopeful feelings rather than have the rug yanked out from under me so often...Time after time...But you get those glimmers of something possible ahead and, despite all your previous experience, you STILL have that hope....

    Bennett crying out at the end of the video....It just...Well, there are no words....No words at all....

    I'm thinking you and Jen....What can I do to help?

    Cyndi

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  15. CB:
    Thanks, I'll ask them next time I chat with 'em.

    Danielle:
    Pure guessing game is right.

    Holli:
    And you've been at this longer than I have...you've tried and failed a lot more meds, gotta be infuriating.

    Tim:
    Thanks I appreciate that.

    Cyndi;
    If there was I'd tell you. We just have to barrel through.

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  16. Why call a Seizure a Spasm? I'm 100% with you.

    When there were "concerns" about the harshness of your writing here, I told you nothing you ever wrote (posted) ever offended me, and that I must have a pretty thick skin, which you told me to have it looked over by a doctor. LOL

    Well I have a thick skin, and I had to develop it, but hell if I'm gonna be "politically correct" about things that have proper terminology, and that regard me and mine alone.

    I call myself a dug addict, to the shock of my family, but what do you call someone that can't live without drugs? I believe that's the definition of a drug addict, doesn't matter if the drugs are legal (like mine) or illegal.

    The doctor probably told you what parts of the brain Bennett has affected, but I noticed something on this video that I had never seem before.

    Right before a seizure his chin muscles would contract in a spasm, have you noticed that?

    I have to say I don't blame your or Jen for not recording any further, it was a small clip and I only watched 46 seconds of it.

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