Wednesday, May 6, 2009

Stooges in the House

If you like happy, sweet, warm fuzzy blog posts then stop reading and go update your Facebook page or something.

Holy crap am I feeling negatively charged right now. Today (the 5th) is the two month anniversary of The Official Diagnosis, and we are coming up on the 3 month anniversary of The Beginning of the Infantile Spasms.

I've been angry, listless, excited, hopeful, crying, laughing, up, down and all around for the past few days, but no matter what the range of emotions I run, it always comes back to feeling LIKE SHIT.

It's been bad for me inside my head. Even enough to blop out what I had scheduled for posting on Wednesday in exchange for this little rant. I won't even bother with a new one on Wednesday, just don't feel like it.

I made a huge mistake a day or two ago, HUGE, and it has been haunting me ever since. Out of curiosity, I pulled up a couple of short videos of Carter, my oldest son, when he was around the same age that Bennett, my youngest son (the one with the Infantile Spasms), is now.

I wasn't prepared for that. Nope...not in the least.

My memory was apparently flawed, and Carter may have just been a very fast developing kid, and I even factored in the one month difference of Bennett being born a month early, but HOLY SHIT what a huge difference. What a giant, mountainous, enormous, gargantuan difference.

You stack that up next to the fact that Bennett has, since this whole Infantile Spasms ride began, lost every single word he ever uttered to where he barely says anything intelligible anymore and you can imagine where the fear-anger-terror-angst-depression-despair-worry-lost-uphill-battle-coming-apart-at-the-seams-devastation feeling comes from.

I'm scared. And I am tired of losing my kid right before my very eyes, little by little. Bit by bit. It's consuming the core of who I am. I gotta figure out how to stop that from happening, but I can't right now. I feel like a Zombie myself sometimes, more dead than alive really.

I knew May was gonna suck ass...KNEW it, but it's early yet and May is winning the battle right now. Gotta find something to give me some strength to keep fighting and beat back this month of May.

Something's gotta give.

And I just have a simple request of the Doctors and Neurologists and Epileptologists and Nurses and Staff who are SUPPOSED to be taking care of Bennett's care right now at our local hospital.


We are beside ourselves, Jen and I, over getting the records we need transferred to where they need to be. That's one issue. That and of course they drugged the shit out of my son pretty fast and VERY strong dosing but so far no one has called us back to tell us what the FUCK we are supposed to do since the MEDICATION IS NOT FUCKING WORKING PEOPLE!!!

Appointments and plans and schemes made. Appointments and plans and schemes changed or canceled, no real explanations given. No real communication flowing.

And you know what...maybe I am making a mistake about blogging about this frustration. For all I know one of the people in charge over there reads this blog because they liked Kubrick figures or old Palisades Toys references or something and stumbled across it.

Maybe they think I'm a prick for calling out the fact that so far their services have been VERY under-whelming. Maybe I am actually hurting my own son's care by blasting away at how badly I think the team over there has been handling this thing.

Maybe...but I SERIOUSLY doubt it.

To be fair, some of the folks I have met there I have really liked and respected, and I still really believe in them. In fact, I would venture so far as to say if those people I am thinking of actually KNEW what I was feeling at this moment there would be some busting of heads going on right now. But somewhere over there, amongst everyone in that circle involved with Bennett's care, not everybody, but somewhere...a weak link has formed and it is affecting the strength of the ENTIRE CHAIN. It needs to be removed, period.

We don't need this...

We need THIS...

It's that simple.


  1. I'm so sorry to read of your frustrations, and anger. I've been in the same boat as you and all you wanna do is yell to someone to "please help me stop this shit". It helps to rant and rave and you are entitled too! If you ever need anything (rants, questions, whatever) contact me through our blog. (Blogging is my therapy for not having mental breakdowns daily!)

    I hope the MF'ers from the locale hospital picked up the phone and gave you some answers. Have you ever tried to contact Chugani?

  2. Hang in there. June is just around the corner. I can empathize. After three weeks of Vigabatrin not working for us I called up the epi (who is awesome and answers her own phone and email) and I said - "this just isn't working. We have to move faster. I don't want to waste time." She talked about drugs that we could try and I said "Listen, if this was cancer we would not be waiting - we'd cut it out". I was happy to try other drugs as long as all options were on the table. She was good enough to adjust the medication and order a surgical consult the following week. I know your frustration because I was there too and everything I read said my child was probably not going to be one of the lucky ones unless we had surgery. Time will tell whether surgery was the right choice but I am glad you are investigating. Sorry again for the hassle you are going through. You are entitled to your medical records and you are entitled to an answer from the well paid professionals who are your team right now. Also, if they suggest Vigabatrin as a next step I'll gladly send you some of our leftovers to start you off.

  3. You're right. Plan and simple, IS sucks ass. But don't give up on Bennett. Austin was essentially non verbal from 16 months to 2 years. It has taken YEARS of therapy but he's fought back. Bennett can too. He needs support and help. Though he's not verbally communicating, can you try PECS? (I have the disk of pictures) Maybe he'll still be able to get his feelings, wants and needs across to you.

    Re: the hospital. If they won't give up his records, just move on. Find another neuro and explain the situation. He has IS, XYZ hospital is not supporting you, etc. If you have to drvie to the ER at the (next) nearest Children's Hospital. As mad as you are, YOU AND JEN need to advocate for Bennett. Direct your anger to a positive cause. Controlled anger can open doors and get Bennett in to see someone else!

    Good luck!

  4. Squeaky wheel dude, squeaky wheel. Andy Dufresne wrote a letter a week... You should call everyday, eventually they'll get sick of hearing from you and they'll call you back. And if they're reading this it should work more as a fire under the ass than a repellent. Doctors get much more abuse than what you're doing. Has there been any more talk on surgery?

    Do some drawing for stress relief and kick May in it's nutsack and poo on it's head.

  5. You sound just like I feel (but usually don't say) and exactly like my husband. He feels exactly the same way, and is ready to move on to the next doctor if this one can't get my daughter seizure free. I have all the same anger, but I just try to remember that these f-ing seizure drugs do not work fast and I have to be a little more patient. But then conversely, I worry if me trying to be patient is making me less pushy with the doctors. I try to find a balance between being an über-b*%&h to the neurologist and letting them set the pace of my daughter's treatment. I think we too are going to try to see Chugani, but I worry that I am just setting myself up for another disappointment. Anyway, I just wanted to say I completely know where you are coming from.

  6. Reading your posts are like re-living the beginning of our IS experience. You are exactly where I was almost a year ago. It makes me want to scream...partly because I was not aggressive enough and I cannot go back (that's not to say YOU aren't aggressive enough, but the non-existent communication on their end is unacceptable when dealing with IS)...and the other part is seeing it happen to someone else. We had a newbie for a neuro in the beginning...and because she was soooo nice, I thought she was a good fit. We wasted precious months on extremely poor treatment. She kept Austin on ACTH for 12 wks!!! 12 wks!! And it did absolutely actually seemed worse. He was having up to 160 spasms a cluster over 45 minutes sometimes. There was no add-on treatment until our last couple weeks...which was only 25 mg of Zonegran. My point is...there was nothing aggressive done until Oct. That was six months into our diagnosis. I had put my faith in this doctor that would not admit she had reached the limit of her so-called expertise. I will never ever...ever forgive her or myself for not being more aggressive. And I will always wonder what would (or should) have happened had I voiced my concerns more loudly.

    Bottom line...keep the phone calls rolling...find another team...whatever it takes. There is no reason why they should not be cooperating in sending the medical records.

    I'm sorry for MY rant here...but this topic obviously doesn't sit well with me. I have so much resentment towards our current hospital and it ticks me off to see it happening to someone else.

  7. I'm glad you're sharing this...authentically...for other parents who either have felt exactly the same...or are feeling exactly the same! And for any health care professionals that happen to stumble here...they need to get an ear full for sure! I'm definately dancing on the angry's hard not to be at war without anger. And that's what we're doing. We're warring against the beast that's trying to steal our children. I've done the same. Accidently stumbled on videos of Toby...or Bristel...who were doing SO much more than Trevor at this age. My God...Bristel could speak TWO freaking languages at 25 months. I'm not even sure Trevy understands a fraction of one! And it's normal...and rage through the emotions. I even once looked up the stages of grief...and thought about posting it...but I never seemed to move out of the angry phase myself.

    Some things do take time. They just do. Like playing the med game. And it sucks.

    Some things take time because of incompetence. We're learning on the fly. But the "professionals" know better!

    I've started asking for every doctor to "cc" me into his/her notes. Every time. I've also recently started requesting copies of ALL scans/EEGs/ that I have them on hand. can see by all the responses that you're not alone! There is a community of people that rage...mourn...celebrate...fight...with you guys. We're all here supporting the best of our cyber ability.


  8. ken I read this during my lunch at 1 and haven't stopped thinking about it ever since....I knwo I can't do a hell of a lot from up here in Canada, but I'm with you in spirit...I don't know how you can carry on, but your a hell of a lot stronger than me. wish I could buy ya a beer or something...

  9. Feels like I can finally understand those "crazy Americans" that pick up a gun, and go somewhere they need something fixed, and just start shooting.

    God, can nothing ever be simple?

    And you ask why I'd like to kill myself. I bet if you could give your life for Bennett's you'd do it in a New York minute. Well sometimes I see killing myself as the only way to save myself.

    Don't get a gun, and don't kill anyone, or self, but maybe go down to where the records are, and start making BIG FUCKING NOISE and maybe that will speed things up.

    I'm have already started a battery of tests, and I'll have plenty more to do, but one thing is for sure, I'm not going to SHUT UP, and make a BIG STINK about it until someone can give me a diagnosis that will explain what the hell is happening to me.

  10. You can always tell when I am having a shittier week than normal...less blogging, longer response times. Not even sure that people read these, BUT...

    I have contacted Chugani and we are scheduled to see him June 3, 4 and 5. My biggest issue about the local hospital is that we have been trying to get records sent from here TO Chugani for over a month.

    We've discussed this in e-mail, but yeah, totally hear you. I wish our Epi's here were cool. They aren't as responsive. Hopefully we can find an alternative.

    Will take a look at the PECS. Also, Bennett is having PT now, Speech Therapy now, and he has an OT eval Monday. I haven't written about all that yet, I need to. Appreciate the advice about advocacy, I totally get that.

    We'll know more on the surgery angle after June 5th. I like the Shawshank reference. Nice.

    Balance. That is the key. It's something I strive for every single day. You are amazing actually to have such balance, you are going through so much more than I right now. You are a VERY together person, I'm in awe of you and a bunch of other folks I meet through these online arenas. Makes me want to try to host an annual event where we all meet each other, so many INCREDIBLY strong and vibrant parents. Inspirational.

    Rant away, always. I want it, I need it. Hearing your story and others is motivating for me. I think you were super smart to finally move on, and we need to, and are, doing the same.

    You know I totally love you right? (And I don't mean in that way, people!) I'm married, I mean 'love' in a 'Brotherhood of Sufferers' kind of way. Kindred spirit kind of way. I just love the fact that you know exactly what to say. Maybe it's the absolutely NO BULLSHIT way you write as well, or something, but something in the way your mind sees things, processes it and expresses it really resonates with me. Anyway, thanks.

    I know you are dude, thanks for taking the time to write a note. I have noticed a divide really starting to take place between my old online world and my new online world. You guys with the toys and games and fraternity of fun we all shared, and my new world of parents trying to save their children. Thanks for being here, and I hope some of the others from our first world stop into the new one more. I understand that they don't, it's a dreadfully painful place, but I appreciate you being here.

    Dude, really...keep fighting, get the help you need. I keep telling you that on the board and will again here. Would I give my life to save Bennett? Of course. But that is so different than taking my own life to stop my own suffering. I love you man...stay strong, stay in touch, and keep fighting to get the right diagnosis for you. And if you do something silly like take matters into your own hands? I promise you that someday in some afterlife I will find you and kick your ass. Just don't. FOCUS, bubba.

    And CAN'T do anything at least until after next May because you need to know what finally happens on the last season of LOST. So you have a full year to get everything fixed. See? Positive.

    Stay loose, bro.

  11. hahaha...made me laugh! And you too!


  12. When I couldn't get a hospital to release records I had to have for my kid, I took the baby and stood in the record room and waited. They gave me forms, a speech on a 6 week time frame, yadayada. As though on cue, the kid puked. All over me, all over her, all over the floor. Records person was a hell of a lot more willing to work with me after that-- whatever it was going to take to get that baby out of her office.

    Ken, I wish I could do something. I keep reading, keep Bennett and all of you in my thoughts.



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