Saturday, May 23, 2009

Bennett's Story Part 6: Road to Nowhere?

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


Bennett had his first Infantile Spasms cluster in February. Then in March he was officially diagnosed with it, a cause was determined (Focal Cortical Dysplasia) and the first real attempts were made to treat this devastating form of childhood epilepsy medically with the a hormone called ACTH, a very expensive treatment that failed miserably.

That sort of defined the months of February and March for me...and what defined April and into May? A new doctor and a new attempt at treating Bennett with different AED's, but essentially a long, miserable stretch of road that didn't seem to be getting us anywhere at all.

Betcha don't know what an AED is, do ya? Well, except for the IS/Epilepsy Mom's and Dad's reading. Those are Anti-Epileptic Drugs, or AED's for short. Nifty huh? I'm a whole DICTIONARY of new terms now, my friend. Intractable, Symptomatic, Cryptogenic, Polytherapy, Idiopathic, Lennox-Gastaut Syndrome...yadda, yadda, yadda...and more FUCKING yadda.

Had someone tell me (during a conversation in which I was telling them about Bennett's history, condition, and possible future) that I sounded more knowledgeable than a Doctor on the subject. I wouldn't go THAT far, but when you have a child that has a rare problem, you tend to read every single thing you can get your hands on.

So, armed with a boatload of knowledge, a list of questions and a whole lot of anxiety, we took Bennett to see Dr. Epileptologist #1, a new guy, in the second week of April. I wrote about that visit in a blog entry called Bennett and the Epileptologist. If you wanna get all into that, go read. If not, here's the quick re-cap.

1. Looked at the MRI for the first time, really SAW the Focal Cortical Dysplasia.

No..looked nothing like that. I just have always found that image funny. :)

2. Dr. Epi #1 wanted to attack the IS aggressively with medication, two kinds ultimately, to try and get Bennett some Seizure Freedom. We IS parents call that SF. He also wanted us to make an appointment to bring in Dr. Epi #2, who bats more from the surgical side of the Epilepsy Home Plate.

3. Plans within plans were laid out. Appointments made, suggestions given. Almost all my questions were answered.

4. Promises were made about securing records for a consultation with someone considered to be an Infantile Spasms expert that WE, on our own, had been trying to set up.

When we left that appointment, we actually had a sense of hope. What I later learned, however, is that this is typical with each new STAGE we enter of Bennett's treatment. We meet with someone, we try something, we have hope it is going to work and we feel better.

This is natural.

This is normal.

In fact, you almost GOTTA have that sense of hope as you round each corner on the Road to Nowhere. It hasn't, to this point, lasted very long, this renewed hope, this renewed vigor, that envelops you as you make your way into a turn. It fades really fast, especially as the Road straightens out again and you can't see SHIT for miles, and miles, and miles. Except maybe another sign for Stuckey's.

Almost immediately, hope faded in mid April. Some of the appointments scheduled were canceled by Team Epi, as I called them now, with no reasons given. Getting the records sent was like asking someone to use a pen to make us a hand-written copy of War and Peace. Nothing seemed to be getting done at all in the medical front. I wrote about these frustrations as well, but this picture, still one of my faves, sums it recap needed.

Bennett was now taking Topamax and we then started adding Keppra. He actually WAS taking Topamax, though he is actually NOT taking Keppra. What's the difference? I what if he is on a generic version of Keppra? Ah...this is what I mean about every day getting a new wrinkle...come to find out GENERIC AED's do not work the same as NAME BRAND AED's. Interesting huh? That epilepsy is a BITCH, ain't it?

He is actually taking Topamax and Levetiracetam. Let's be specific.

As we watched him, through April and into May, lose the ability to say any of the words he used to say, as we watched him stumble and fall and lose his ability to keep himself as well-balanced as he used to be, we could only wonder to ourselves. Is this the medication or the condition? Is he groggy because he just had a strong dose of an AED or is his brain getting more and more scrambled because of the seizures?

And of course, the seizures were not going away. And why would they really? I mean, let's be honest here and lay it ALL out on the table. Why would anybody REALLY expect them to? Infantile Spasms are, in Bennett's case, a symptom. Like any other symptom, when you treat that symptom, you still aren't treating the root cause.

There is an abnormal area in his brain, that has been established and verified. That abnormal tissue is somehow, some way, creating an electrical discharge that spreads out across the rest of his brain tissue and causes a seizure to occur. Why in the world would there or should there be any expectation that this symptom, this seizure event, this 'INFANTILE SPASM', would stop if the abnormal tissue is still there?

I have never received an answer from any doctor about this, and I HAVE ASKED THIS EXACT QUESTION. The answer has always been. I DON'T KNOW. Is it possible that sometimes, even in the case of Symptomatic IS resulting from Cortical Dysplasia, that some random medication could be tried that results in some kind of 'short circuit' of the tissue, or at least a short-circuit of the event itself, to stop the seizures from happening? I guess it is possible. Probably HAS happened, otherwise I suppose doctors wouldn't be trying the medications. They have to have worked at some point on some poor soul in the past.

Just sucks to be 'trying things' on your flesh of your flesh. You don't see him or her as someone to experiment on, you see them as your precious child. You see them in a way NO ONE else can or will ever see them. You also see their future flash before your eyes, and holy shit it is DARK in there, and all you want to do is MAKE. IT. STOP.

But you can't. It is simply not within your power.

So...what CAN you do if you are on a Road to Nowhere like this one?

Well, first of all, you can remember to remember that THERE FUCKING IS NO SUCH THING, YA NEGATIVE-THINKIN' JACKASS. The Road is going to lead somewhere, you just don't know what that final destination is going to BE yet. So stop using dark metaphor and start trying to make Tony Robbins proud. Get your sorry ass out of your funk as much as you can today and TRY TO STAY POSITIVE.

I know it's hard, and it's OK if you can't make it through the entire day without wanting to punch someone, or cry, or curl up on the sofa and stare a while. But there are golden moments in any day during times like these. Grab them while they are there and bathe in the pureness and joy of them as much as you can.

And don't forget, there is someone in the back seat who is depending on you to stay focused, stay sharp and stay alert. He needs you to calm the fuck down and relax. He needs you to gather as much information about what lies ahead, cause you are the only one who can take him where he needs to go.

So that's what you do. You search the net for blogs from other parents who are going through what you are going through. You look at message boards. You find you are not alone. You reach out. They reach out to you. You find that everybody has a unique story. You find out that some have it a little better than you, some have it worse, but you all share a commonality, a bond that you never even knew was possible amongst a group of complete strangers.

You read. You absorb. You set up meetings with Early Intervention Services. You set up therapy. You talk. You listen. You learn how to do things differently. You read inspirational things like Welcome to Holland. You gather info. You keep records. You keep your cool. You lose your cool.

You do whatever you have to do to get through each and every day, all because the little guy in the back seat needs you to.

That was how it went through April and into May. And that's really where we are right now. Good times. Bad times. You know I've had my share.

But there are plans. Things in motion. Stuff to look forward to. Signs up ahead.

And that's as good a place as any to start winding down this little history lesson, for now. It about catches us up to where we need to be for the time being. Bennett gets Physical Therapy to help him with his balance and gross motor skills, Speech Therapy to help him with, speech, and Occupational Therapy to help him find an Occupation so that he can support his parents who will certainly be fired for taking all this time off for all these freakin' appoinments. No, the OT is to work on his fine motor skills. I am still trying to find out why it is called 'Occupational'.

Shocker of all shockers, Team Epi called and wanted to actually schedule a meeting with Dr. Epi #2 next Wednesday and he already met with Dr. Ped this past Friday, just for a 'Hey How Ya Doin'. We're gonna have his eyes checked, just to be sure, we're gonna have his hearing checked, just to be sure. We're gonna do a lot of that.

But best of all, in around ten days, we are loading up the Lillymobile and heading North, on a Road That Most Definitely Leads Somewhere. There we will meet with Dr. Yoda, the Jedi Master of Infantile Spasms, and try to find out what else might lie ahead for our little guy. It isn't our final destination, and we may come away from it with good news and we might come away from it with bad news.

For now? I'm going to hope it's good news and leave it at that.


  1. You speak the truth. Why is it that every time I get off the phone with Maddie's Neuro I feel a sense of hope? That having a new "plan" may actually do something for the seizures? It's now I should have caught on that we are just experimenting and there is no reason to think what we have come up with is going to work?

    But you are exactly right, we have hope because we have to for our precious children. As I nurse my daughter through a seizure, I promise her after each spasm that mommy will make them go away. And she waves her arm and says "weway" (her pronunciation of away) after each promise. And I am going to keep that promise no matter what it takes.

  2. You are going to love Dr. C. (I'm assuming you must be talking about him : ) We saw him in March, and he was beyond amazing. I love the holland poem too. Someone sent me that about a year ago, when I was in hell and it helped.
    Good Luck


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  4. Sorry--removed that last post due to an annoying typo. Just wanted you to know I'm here, fellow former IS mom, listening...

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  6. Funny thing this post was a lot about roads and hope, because I've been thinking about both a lot lately.

    And I keep coming to the same problem with hope that I got into years ago. In mythology Pandora's box held all the evils of the world, and she was told not to open it, being human, etc. we all know she ended up opening it, thus unleashing all kinds of evil into the world. But she closed it in time to keep on thing in the box, and that was hope.
    If the box held all the evils in the world, and we later found out that hope staid locked inside the box, doesn't that mean that hope is essentially evil? I rather think of "I wish", or "I'd like" than "I hope" because if keep finding out that hope can be a very dangerous thing, to lose, but also to have.

  7. Dr. Yoda is a lame-o nick... *wink*

    Wishing you smooth sailing on your road to Rockstar-ville. I hope hope hope he has positive happy news for you guys! Bennett is stinkin' cute btw.

    I'm in a funk myself. Made the hubs pick me up chocolate. Not a sissy bar either...a big fat juicy costs more than a dollar bar!


    You're right. Our kids have given us a connection...we're fam.



  8. ps. Oh and when you see The totally have my permission to name drop!

    and my modifyer words are bunk tonight! Much more fun when they almost make sense...

  9. Liz:
    Glad to know I described the experience in a way that resonates. And yeah...we will fight for our kids until we have no fight left in us. Then fight some more.

    I hope so...I do hope that he can give us some new plan of action that will have the result we want for Bennett.

    Would love to hear more about your journey with your child.

    You always have an interesting slant.

    Eh...I just don't want to keep stealing your nickname, and besides, I love Star Wars SO much more than I like Rock music, so this works better in my world. :)

    Chocolate is a great medicine. I sometimes take much more than the prescribed dose.

  10. See, June is right around the corner...not much longer now!

    I probably sound like a broken record, but regardless of whether or not Bennett is a candidate, you will learn SO much more from Dr. Yoda/Rockstar!

    The people in Detroit were so amazing and so informative, that even though we didn't get the news we went there for, we still returned with an open mind and positive outlook. It never ever seemed like a wasted trip.

  11. I wanted to add to what Holli said. KC is not a surgical candidate...he has abnormalities on both sides, but Dr. C recommended Trileptal, which no one has mentioned in the two years we've been at this and it's actually working! He did give me so much hope and made me feel like I could completely trust what he was telling me. For once, I wasn't second guessing if we were doing the right thing or not. Anyway, just thought I'd chime in on that. I'm sure you will be relieved to be able to stop talking about it and just get there. I really hope he gives you some of that hope that he gave to me.


  12. ken I love how in the middle of this long and heart wrenching story, where I am tearing up occasionally and wishing there was something I could do more, that all of the sudden you can make me literally laugh out loud. 'Occupational Therapy"....that's awesome. I'm glad you've still got that sense of humour man, through all this crazyness. And here's to hope! Right on!

  13. Ken...I waited until I could finally read all six parts of your story at one sitting...

    I am so glad you did this....Maybe I should try it again, being more specific with my details...???... How long would THAT epistle be, after 24 years, though? Doubt anyone would want to read it all!! So much of it is like a blur to me at this point, anyway...After all this time...I am so glad you guys who are just starting out have this tool to document your trials and tribulations....

    Speaking of trials....Anxiety attacks? Been there, done that, too....Had them for about two years back in college...It was very difficult, but somehow I managed to get through them (AND college) with a WONDERFUL counselor (with whom I still am in regular contact with through email and Facebook!)...I have feared SO OFTEN that they would return....So far, so good...But I am always afraid they are right around the corner again...I know how you feel....Being a single parent now, I CAN'T do go through that anymore!!!

    The "Road to Nowhere"? LOVE that...As you know, we haven't faced injections or surgeries, etc...Only a vast array of AEDs....And with every new Rx, my hopes get raised...Then they are dashed....("dashed" is really too soft of a word for it...) But, hard as I try to keep the hope at bay to avoid the inevitable disappointment, it slowly comes creeping back in...Year after year and Rx after Rx....I think it is inherent for us parents of children with a special need....Hope becomes part of us, though it will wax and wane...That road MUST lead somewhere!!!

    Thank you again for sharing your beautiful Bennett with us...And your heartfelt emotions....

  14. Just finished reading your 6 parter on little Bennett. I'm going to have to try to find what's happened in the last 2 years by browsing through your blog...I feel invested in you, your family, and your struggles.

    Our children are much older than yours, but our younger 2, 'Hopper' and 'Scooter' (ages 21 (almost) and 18) have had many struggles along the way. We are very thankful that they did not have seizures or the like. The emotions of which you so eloquently wrote could have been written about many different points along our journey. It brought so many of those emotions back...

    Including the humor. I laughed aloud at your explanation of Occupational Therapy! :) Thanks for the smiles amidst the tears!


    Reading your post gave me the mistles. :)

  15. I realize I'm a day late and a dollar short on this, but I just stumbled across your blog and have been reading your story. I'm a pediatric OT and often hear the jokes about Occupational Therapy for kids. One time I was wearing a t-shirt that said "I love OT," and somebody said, "Overtime - heck yeah! I love that too!" But just for the record and before I dive back into reading your blog again: The word "occupation" in the term Occupational Therapy comes from literal definition, meaning "the main activities in one's life" or "the way one spends one's time." In general, that involves three things - self-care, leisure, and work - or, in the case of children, self-care (learning to get dressed, etc.), play, and school or school readiness activities. You probably know this by now, but I just wanted to share the info with any other late readers who may not be as familiar with the world of OT. Thanks for sharing your story and your perspective; there is such value for those of us in the "profession" in learning about the behind-the-scenes stories.

  16. Hey Stephanie, thanks for that. You remind me that I REALLY need to put some kind of bridge between this piece of Bennett's life and the present day. So much has gone on twixt then and now.

    And believe it or not?

    Nope, I never did find out what it meant. Just goes to show you how bogged down one can get in this life. Or, scarier, what ones priorities can become in order to cope.

    Example: When I wanted to find out what a DMR was in HALO a week or so ago, I knew in less than 3 hours.

    Go figure...;) If you have any questions about where to go next, shoot. With a DMR, or course.


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