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 up...no 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 mean...so 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 his...um, 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.