Sunday, July 26, 2009

Weekend at Cleveland Clinic Update 4: 07-26-09


Had rounds with Dr. Lachhwani this morning, fairly early. Damn I dig this dude. The only doctor in my entire history who has shaken my hand every single time he says goodbye. Something about that I admire.

Anyway, they aren't going to disconnect Bennett today, they are gonna leave the leads on and stay one more night. What he couldn't tell us is whether we would be discharged tomorrow or not. If they happen to be able to get some sort of Neuro-Psych eval scheduled for tomorrow, they're gonna keep us another day. If not, we leave tomorrow afternoon and come back for the Neuro-Psych later.

But I did tell him that I need the answer on that, whether we stay or go, by tonight, as I have to put things in motion. He was cool with that.

So, about the meeting. Bottom line is that according to all the EEG data Bennett's seizure activity isn't clear-cut single focus...but, that doesn't mean we aren't likely going to go down surgery road, because it looks like the odds favor that. The Dr. feels that the malformation in the left temporal lobe is the kid acting out in the class since there are many things that DO originate from that spot, and that any other apparent focal spikes (other kids getting riled up) are a generated result of the discharges that occur in the left temporal lobe.

Remove the disruptive kid, chances are that the rest of the kids calm down. Chances are. He was pretty blunt. 60-70% chance of seizure freedom, and then varying degrees above that of seizure relief with any other seizure activity possibly controlled with medicine. And of course, there is a chance it could do nothing. Yeah...that we knew already.

He was frank but very optimistic...ideally you want the MRI to say this, then the PET to back it up, then the EEG data to back that up, but in many cases similar to Bennett's, not identical because no two cases are, that just does not happen. But you take all the evidence, all the data, and then look at the boy's development in all these areas except the one area where he has the malformation. So many of these things even though they are not 'definite this' and 'definite that' lead us to make very educated suppositions.

I guess it's almost like solving a murder, solving a puzzle, whatever...answers are usually not just YES and NO...they are generally somewhere in between.

But this is all still all just talk. They'll present the case Tuesday to the team, the team has to confirm it though Dr. L was pretty convinced that Bennett would be selected and that he could really benefit from the surgery. We'll have to come back and meet the principle players, and we'll have to schedule some stuff. To me te odds would favor a grid placement pre-surgical evaluation, I'm all for ANYTHING that can make the outcomes more favorable. But that's me guessing.

All part of the journey, which is an ongoing process. We could get further down this road and then change direction, all depends on what happens each given day.

We are adding a new medication, Lamictal, today. We are also going to begin a Vigabtrin wean I believe. He mentioned some other med he wants Bennett to try and dammit if I forgot it already. I will ask him tomorrow. That's down the road.

It's all very confusing at times. In these meetings I need to process, think, read, talk and research. But as it stands right now I think the odds are favoring a surgical procedure sometime in the next couple of months. He seemed to believe it could be a matter of weeks and thinks that it should not, for Bennett's sake, be some long, drawn out process.

More as I know it...




One interesting side note. I still cry most of the time when Bennett has seizures. We're coming up soon on the six month mark...and it still isn't any easier to watch. I'm mentioning this because I never want to get used to it, ever. Keeps me motivated to push forward. It's important to me. It wrecks my world mentally, and this may sound odd but I want my world to keep getting wrecked by it. I need it. At least for now, as there will be a lot tougher moments ahead.

Dunno why, just thought about that and wrote it down. Probably sleep deprivation.

Later...


13 comments:

  1. Beginning with the end: If you no longer cried, if you had reached conformity with the seizures, than I would be worried. I know exactly what you mean, when you say you want it to "keep wrecking your world". I guess it takes a nut to know another!

    Well you have to be there one more day, maybe two. But it seems like you're on the right track. Yeah, I know still miles away, and with a lot of people to meet, before you sleep. But what matters is that things are going forward.

    I read the previous entry, about Bennett sleeping through the night and it made me wonder something: Does Bennett only have seizures when he's awake, or does he have them in his sleep too?

    Odds are Bennett will have a cool scar to charm the opposite sex with. But I never thought things would go this fast: Two months? I know the sooner the better, and I agree with that, but I always thought it would be a longer drag out process.

    Again he looks like he's very active and engaging the camera.

    When it pertains to illness we're very alike, we like to study the condition, do research, etc. People say we make the worst patients. But when you've had the bad medical luck we've both seems to have, covering our basis is a really smart thing. I've been researching the hell out of the digestive system, so when I get to my appointment on the 29th, I'll let the doctor say what he will, and then I can start the Q&A. Thank heavens the internet came along when it did. If it had come a few years earlier maybe I wouldn't have been misdiagnosed so many times in the past.

    Keep up the updates, they keep you sane, and keep us informed.

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  2. Maybe I'm a wack job, but if there was some "piece" in my child's brain that was likely causing seizures, well, at least part of me would want to go in there and cut it out myself.

    Seizures are, bar none, the worst things I've had to deal with raising a special needs kid. The helplessness that I feel makes me want to cry. or throw up in the nearest receptacle.

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  3. I am so glad it seems like a plan is beginning to take shape. That is a great thing.

    We are almost at 7 months of seizures now and I still cry too. And I am a really tough woman most of the time, but I don't think I could ever get used to this. These horribly devastating seizures should not become normal to anyone. I think I am re-energized by the anger and sadness I feel with each seizure that I comfort my daughter through. I will never stop looking for a solution for her.

    I know it is a long scary road ahead, but I am so glad you
    are one step closer to a possible solution for Bennett.

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  4. Tears still come for me after ~ 9 years of these drop seizures....Now, granted, I am not crying with every single one....I find myself shedding them when he has his flurries and I have to do the rescue meds...OR when I am just having one of my little "pity parties" thinking about the whole situation....So I think you are WELL within the norm still having your eyes still welling up!!! I would think something was wrong if you WEREN'T moved to tears!!!

    As for your doc's report...Sounds SO very encouraging...I think you are reading things right...But I can tell you are not wanting to get ahead of yourself...VERY smart...Slow but sure....Things will come together soon...

    Just keep doing what you are doing....I know it probably doesn't FEEL like it, but you are doing AMAZINGLY well....What a great daddy Bennett and Carter have!

    (BTW, do you have a single older brother or uncle? Ha!)

    Cyndi

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  5. Yeah, we're 17 months in and Marissa's seizures still wreck me too.

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  6. I so didn't want to read this post. Not cause I don't love you n' stuff. Just cause...ya know. Next week.

    Anyway...I'm glad I did. You sound good. Having information is good. Having a doctor that helps you digest that information is really good.

    Katy...honey you're SO not a whack job. I have randomly felt the urge to just claw The Monster outta Trevy's brain with my bare hands.

    xoxo

    Sweet dreams luv...

    ...danielle

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  7. Ditto to the above...except for the older brother or uncle thing...

    All the best each day. I'll read you tomorrow.
    R

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  8. Progress. Little by little, its progress. I like your doctor. He gets it. Thats important. I should mention that Emmas EEGs had activity all over but they said it looked a little stronger in the area of cortical dysplasia. As far as I can see in the EEG its just big squiggles everywhere. Super clean EEG since the surgery except for a little sharpness when asleep. Its not perfect but my friend if you can even get what we have now, the difference is remarkable. I hope Lamictal can take the edge off. Dropping the Vugabatrin should help. It will be interesting to see how much that is effecting things. For us, Vigabatrin just overexcited her and we had the worst EEG while on it. But I'm glad we tried it. We had to do one frontline treatment before rushing headlong into surgery. The excitement of the possibility of a surgical release from this hell is only the beginning. Its going to be a whirlwind of emotion. If your insurance covers counselling, start it now or you will end up in a bad way. Try and talk to the social worker for the neurosurgery department before you leave the hospital. You are going to need a huge amount of support.

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  9. I've been trying to get on your blog all weekend to see how things are going, and finally got around to it. Sounds like you have a kick a** Dr, which is awesome!!

    i love the analogy of the rowdy kid in class. i often wish Connor had a rowdy kid that i could beat unmercifully and kick his behind out of the class. sounds like they have some plans..which is always helpful and encouraging.

    I LOOOOOOOVEEE that top pic of B too. and it really melts my heart that he too has a puppy!!

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  10. Wow, this sounds really hopeful so far! By the way, what you wrote about how they determine surgery...the EEG, the MRI and the PET...is exactly, almost verbatim what Dr. Chugani told me about KC. Except nothing of KC's matches, but he told me that in case in the future things change. I was glad to read that because to me it indicated that the Dr you are talking to is top notch. It sounds like you guys are finally getting somewhere. I am so hopeful for you that Bennett will get his miracle.
    I hope the hospital visit ends soon! I know how terrible they are, how exhausting on every level. Hang in there!

    Karen

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  11. Wow...Dr. L sounds amazing. He really seems to care. Do you know what the MRI results are yet? That is great they are trying to schedule a neuro-psych eval...I always wanted to get one for Sophie.

    Grid placement would be great if that is what it takes to isolate the area to be removed to just the left temporal lobe...cause, of course, the less the better. Not to complain (can't complain because we got seizure freedom which makes up for any losses) but to not have to deal with the periphial vision loss associated with the occipital lobe...that would make recovery that much easier.

    Even though I haven't been leaving comments...I have been reading and thinking about you all during this process. If you need anything at all...just call...my life may be crazy at the moment but I take it minute by minute and I do have some free minutes. Oh, I so need to update my blog but just to let you know...STILL SEIZURE FREE!!! I can't wait for the day that you get to write those words on your blog...someday soon.

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  12. What did you say in a blog before, "cautiously optimistic"? I think that should apply here. It does all sound very positive. I'm sure it's every dr and parents' dream for it to be a clear cut YES or NO case, but like you said, it can't always be the case. But, as long as the team confidently agrees that YES is the way to go...

    Kind of weird to say, but I'm glad too that you are still wrecked by the seizures. It means you still feel the pain that drives you. I would be worried if you were numb to it.

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  13. Hope you are headed home soon. I am glad the doctor sounds confident. That's got to help the anxiety some!

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