Wednesday, September 2, 2009

Dr. Jekyll and Mr. Lilly

In advance, let me just apologize to any of those people who are going to be reading this who would KILL to be in our position right now. We had a brain surgery last week, something a lot of kids are not eligible for to treat their IS, and since Sunday, and with that only a single spasm, there have been no seizures.

The preface is, I get that we are one of the lucky ones, and I also get that this is a long journey, with many twists and turns along the way. What frustrates me is that right now, I am not celebrating his condition of having no seizures. Instead, I am drowning in fear over what I have been witnessing but not really talking about very specifically over the last couple of days.

We've had the issues you'd expect, the constipation, the pain managment, the vomiting, the periods of lethargy, the having to be RIGHT there at all times to watch he does not fall or hurt himself.

What I was not prepared for was the radical change in his personality. This is not the boy I played with the night before the surgery. There is something very 'off' about him, and the thing is I am not really sure if I am supposed to be as worried as I am about it. I think I've said before. No manuals.

He screams a lot, but not a scream of pain, more of aggression. He bites and chews at everything, slaps at everything. I have rarely seen him laugh or smile. He might let you hold him a second, then he's writhing around, thrashing to get away.

I should probably not write about this, but it's what I do. I'm just fuckin' scared today that I did something wrong, that this is not going to change. I know logically it's probably just some manifestation of the brain healing, but the emotional part takes over in me and I get very, very concerned.

And bottom line is I should have been more prepared for this week. I should have gone through that service and looked into hiring someone for the week to help us. I just didn't realize it was gonna be like this. I thought he'd be woozy, groggy, sleepy and in some pain that we'd give him pain meds for. Even thought yeah...I can handle the vomiting if there is some and the poopy problems.

You know how I record everything, how I shoot photos of everything? His behavior is so feral right now I haven't touched my camera, its that freaky.

Like I just told a good friend of mine. I should be grateful, I should be thankful, he hasn't had a seizure in days...but right now, at least today, it just feels like a different flavor of the same Kool Aid. Sure, no seizures, but I have a son in great distress and I am powerless to help him. I hate that feeling more than any other I have experienced in life. EVER.

Let's hope tomorrow is a better day.


  1. That totally sucks.

    I know I've heard stories of kids being different and that it often is just temporary. You have too.

    But it just totally sucks and I get the fear. I'm sorry it's happening, and I'll pray that your Bennett is back soon.

    Big hugs from NC!

  2. Is he taking Phenobarbitol? I don't remember. I know that's a fairly common side effect of that drug. Hopefully it's just a temporary thing. I understand how frustrating that can be. When Reagan's irritable...I'm irritable!

  3. Is he taking any new meds?? AED's can seriously alter a kid's mood. My son has changed, night to day from AED's. Just a thought....
    Congrats on no seizures...sorry about the rest.


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  5. Like you said yourself Bennett before, Bennett didn't have much of a personality before surgery, we even regressed on what he has previously learned.

    Now his brain is healing and you're seeing a different kid. You know yourself that brain chemistry is a very though thing to level out, even with med, now imagine a brain that just for screwed around a week ago. I can't tell you 100% sure, but I'm almost sure this is still part of the healing process. His higher brain function must be in turmoil, therefore the crazy EEGs, so I would guess the more reptilian, and primordial brain we have have is taking over, until the upper level functions regulate, after all the reptilian brain, is the one where self preservation resides, and his brain probably just noticed that it needed to go into defense mode.

    As I keep saying with every post: Give him some time. After all there is nothing more life changing than brain surgery. Just be glad he had it young, a few years from now, things would have been a hell of a lot different.

    But it's normal you're scared and worried, before IS you knew one child, after IS you knew another, before surgery you knew yet another version of Bennett and now after surgery a new one pops up.

    Also as a rule of thumb, kids can get quite restless after surgery for a while, they don't react to it the same way an adult would, and that generally happens, when they have less drugs in their system. Just like now, where all the hospital drugs are getting totally flushed from his system.

  6. Poor Bennett, I hope tomorrow is better for everyone!

  7. I HATE that y'all are having to witness these behaviors...

    And I know how joyful you are that the seizures haven't reappeared....It is just hard to wallow in that joy when you are afraid for him right now....I'd be just like you...

    I'll bet that this is part of his healing process, as has been said here....And I'll bet other parents who have been through this will have their stories to share with you...

    Just hang in there...It must be so difficult to be patient right now...


  8. Remember I talked to you about "forced normalization". Someone just turned the volume of the world up and he is in sensory overload. He had sensory processing issues to begin with and this is terrifying. It is the same reason that many kids with cochlear implants beg to have them removed initially.

    We went through this and we are still going through some behaviors. What I would say is that watch how it evolves. I had Emmas blood tested when it escalated to the level of her violently biting through her crib. Turns out she was anemic - I blame blood loss in surgery for that.

    Complain away. Let it out. But have faith in Bennett - he will heal.

  9. Ken,
    I've never posted, but followed along from Danielle and Elaine. I have a 16 year old Trevor who had his surgery 10 years ago. I just had to post today because we had a nightmare of a recovery for the first couple of weeks with our Trevor. He was totally miserable, constantly crying and whining, could not sleep at, so sad. We were beside ourselves with what to do. First we had to wean the phenobarb (as one mom said) which they added in the hospital after his post surgery seizures (5 days of them). Then it still continued so we videotaped him and went in and showed them the tape...over the phone descriptions were just not working.
    Anyway, they ended up doing an MRI and my guy ended up with a shunt. Now, the chances of this happening are very, very slim, and I don't want to scare you, but I wish we had known this might happen. After the shunt was placed, he started to heal and feel good and the recovery was amazing. Smiles, joy, happiness...
    Honestly, I don't even know if I should post this, but dang, for some kids, including mine, the recovery period is so hard and I hate to hear it happening to Bennett. If there is a slight chance that this is the problem, then I have to post it.

    Sheila, Trevor's mom

  10. I am sure its just part of the healing process. Remember he just had surgery on his brain, I'd imagine its part of the process that no one told you about.

    Hope tomorrow is better. Maybe he is just mad that his head might be sore?!

  11. for what it's worth Ken...I appreciate your honesty.


  12. Poor little Bennett... I think it will just take some time...I'm sure you already know that though. Just wanted to say that we are all here and we think about your brave boy all the time.

  13. Ken, I wouldn't even pretend to think I could understand the full scope of this situation and the aggression coming after surgery. But, I do get the aggression in general. Austin has been showing very similar behavior lately from his meds. There is a lot of weird screams (honestly, it sometimes sounds like cats fighting if I had to name it), he bites the top of his fist until it's solid red (while screaming). It's a nightmare.

    I'd definitely ask some questions, because there could be different causes (meds, or like Sinead said about the sensory issues), so you can maybe come up with a plan to help him.

  14. It's good and scary at the same time.

    I don't have much nuggets of wisdom or insight to offer, only support. This too shall pass.

    I can't remember if you did ACTH, but if you did, remember that also turns your kid into a monster-child that you just can't comprehend? We now deal with Autism in Abby (I keep praying we're done with the IS now), and I can understand being helpless when there's aggression and sensory overload, and not a lot you can do to help.

    And I agree with Danielle... I appreciate the raw honestly too.

  15. The honesty is painful, but much admired. That fear, that he is not ever going to be the same, is such a base fear- identity and personality and self all wrapped up with the limited knowledge we have of the brain- your fear is totally understandable. But irrational probably, too. You know you did the right thing in having the surgery, no matter what. I'm positive that his current behavior is just part of the healing process. No smiles has got to be totally normal for a kid who can't really talk, has just had brain surgery, is constipated and on serious medication. Remember you need to smile at him too. There's no way he doesn't feel all that stress and worry around him.

    I'm sending you nothing but positive energy and happy thoughts (which is irrational and useless too, but it's all I got)!

  16. Gotta say DITTO to everyone above.

    I refuse to believe that our personality is stored in the left temporal lobe! His brain will adjust...the brain's plasticity is unbelieveable. Even if emotional control becomes an enduring issue, you would eventually decide to consult a behavioral specialist to help just like he was in physical therapy prior to surgery.

    I also thought of this, it takes the brain 22 years (+or-) to complete it's development AFTER birth. Bennett has time.

    I pray he calms enough to let you and Mommy hold him soon.

  17. One other thought: he is getting over the trauma of being in the hospital also.

  18. For a mom that is heading to the Cleveland Clinic in a couple of weeks for observation and second opinions and surgical candidacy....your honesty is highly valued and appreciated, Ken. I hope you know I continue to pray for Bennett and you and your family.


  19. I've not been where you are, but I've been in some other places that were VERY similar. And yes, it's scary as hell and I bet a lot of other people here can relate in one way or another. My son has frontal lobe damage (among other places) and I'd taken Freshman psych 1001 and knew the frontal lobe damage meant personality damage. Then Charlie had surgery (g-tube placement) and cried for an entire week straight. It took four adults working round the clock to deal with that and i was scared to death that they were going to have to institutionalize him or something. It was just the surgery. For the record, Charlie is one of the happiest kids on the planet front lobe damage and all.

    Wishing you the best is this hard, hard time.

  20. I'm not an IS parent, but I appreciate your honesty just the same.

    Praying that this behavior is just a temporary thing that is part of his healing.

    One day at a time....


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