Friday, April 24, 2009

Days of the Living Dead

As much as I hate to disappoint all the George Romero enthusiasts out there, this is not some blog about all the great 'Living Dead' zombie films from the beloved director. Rather, it is just a simple note or two about my son Bennett. Of course, the zombie reference can also apply to me...sometimes I feel a lot more dead than alive.

Sorry I haven't written much lately, I have been in a very negative place all week mentally so I didn't feel like just dumping it all. Bennett's condition has not improved, getting any solid info from the local hospital about what to do next or when certain appointments are supposed to take place has been like pulling teeth, work has been draining, my camera may have died, had some computer file issues that are gonna take weeks to repair (cause I can only do it in my free time), and Spring has kicked in with full force so I am sneezing like a maniac all day long.

Bennett, as of Thursday of this week, has begun to take Keppra. He is now on Topamax and Keppra combined in an attempt to stop the seizure activity. If anyone needs dosages let me know, but they are strong doses from what I understand. He is very wobbly, off balance...he is out of it a lot of the time. Sleeps a lot more. I barely recognize his personality some of the time, actually a LOT of the time. He's got a very zombie-like gate to his walk quite often.

You sometimes sit there and wonder if he is actually regressing or if he is just so doped up that he can't think straight. Doesn't say the words he used to say, but could be the drugs because once in a blue moon a word or two comes out. That could be parental wishful thinking, though. And sometimes, though much less so right now, he is laughing and giggling and smiling and interactive.

But only sometimes.

Anyway, that's about where we are this week. No forward momentum, but I didn't expect any. We don't have a further battery of tests scheduled out of state with the more renowned IS doctor until early June. Until then, which is what...5 to 6 weeks? I don't expect a lot to change. A continuation of trying meds and trying to keep Bennett from falling down and/or regressing any more if that's possible.

Let's close with some pics of Bennett. What is significant about these photos is that they were taken around 4-5 days prior to February 12th of this year, the very first day he had his first seizure. It is the last time I had the camera out taking pictures before all of this started.





That actually feels like ten years ago, and it has only been a little over a couple of months.

13 comments:

  1. I'm so sorry to hear Bennett is no better. So you've done ACTH, has there been any mention of Vigabatrin? For us, this was Austin's miracle, and it tends to work well in combination with Topamax. I know you have 5-6 weeks still until your visit. The nice thing is, you generally know if Vig is going to work within 2-3 weeks. And it's a relatively quick titration.

    Just a thought, I know some neuros refuse to prescribe it since it's not yet on the US market.

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  2. I hope you don't mind the following advice so here goes...

    I agree with Jen. I would push for Vigabatrin. Some on the best neuros will not recommend it because of the FDA issue but when ask they will usually write the script.

    Is Bennett on Vitamin B6? It helps with some of the side effects of Keppra and I believe some of the other AEDs but it is mostly reference with Keppra. It is over the counter.

    Is Bennett on any omegas? DHA is promoted highly in baby formula but after that you don't hear much about it. It is great for brain development.

    Also, is Bennett receiving any therapy through Early Intervention? Even if you don't think he needs it at this time, he automatically qualifies in most states based on his diagnose. And it might be something as simple as a developmental therapist coming out once a month to make sure he stays on track.

    Sorry if this is stuff you already know but I just thought I'd throw it out there in case.

    Elaine

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  3. Jen:
    We've discussed Vigabatrin, but it has not been prescribed yet. More on that below. (And you are right, there is some reluctance on the part of our docs on it...I sense that only, I do not have hard evidence of this.)

    Elaine:
    Please, please, please...never apologize for trying to help me with information.

    About the Vig, we will probably go that route in the coming weeks, but actually believe it or not my wife is also reluctant about it. Two reasons...one, she works as a Nurse Case Manager in insurance.

    She has seen first hand insurance companies deny coverage on patients on things they experience that in any way relate back to a NON-FDA approved treatment. This scares her, especially if Bennett takes an alarmingly bad turn. But she also knows that it is something that could stop the seizures. The other thing with her (and to some extent me) is that we are both skeptical about it working for a child who has the known FCD. I just haven't come across any parents who have had much medical (non-surgical) success when it comes to Cortical Dysplasia, but if you know of any point me in that direction I would love to see the stories.

    But Vig is in my mind for sure.

    How do you figure out a dose for vitamins and omegas? I do want to start giving him some vitamins and such but have no clue what to give him or how much of it.

    Bennett has been evaluated by the local EI organization, we now have someone scheduled to come out once a month and we have some goals over the next six months we set down in a meeting with her yesterday (which I totally forgot to even write about).

    But yeah, he is not in 'The System', and we will go from there with him as any needs arise.

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  4. I meant to write...he IS in 'The System'...

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  5. Ken...

    I'm SO sorry. I asked my husband last night how I'm supposed to keep living when my heart is broken every single minute of every single day. He didn't have an answer either. Except to hold me and let me cry. Because some things just have to be lived through. Cried through.

    A friend...who is further down the IS road...told me awhile ago that it's scary now...but it gets better.

    And I can tell you that he was right. My heart is still broken mind you. But in some ways...I'm stronger today than I was last year. And we're in a much sadder place this year. But somehow I find I'm crying less often. Enjoying the little things more often. Although there are zombie days mixed in too. But I know a year from now...you'll feel stronger too.

    I'm with Keto where you guys are with Vigabatrin. All these decsions are enough to make you crazy. Everything feels very heavy...

    Anyway...

    When we first started with EI Trevor wasn't very far behind...so they had us on a monthly monitering as well. Sometimes it's really hard for them to see past the cute. Because let's face it...we have pretty adorable little guys! Who happen to have little brains that are always on fire! Fire that prevents them from learning. It took me awhile to build the courage to ask emphatically for more services. But I finally got to the point that I felt like Trevor NEEDED more. I'm just sharing that in case...

    Trevy's fussin' at me though...so I'll cut my book off short! haha!

    (((((hugs to all of you!))))

    ...danielle

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  6. Ok just giving my two cents here, because we've been through it. Vigabatrin has been our saving grace. Now, its not for everyone obviously, but within 2 days of starting this Daniel because seizure free (we are currently back on Vigabatrin after being off anti-seizure meds totally for 5 months) and its doing its job again. At one point through our journey we were on both ACTH and Vigabatrin!

    We haven't had any horrible side effect from the V, but we do get regular eye exams just to make sure.

    Don't know who your Neuro is, but if you're ever looking for some good second opinions..Dr. Harry Chugani from Children's in Michigan. AWESOME guy.

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  7. Well I guess I should have read through your comments before I blurted mine out! I just read the post and say Hey I know about that subject...

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  8. Blurt away Melanie, that is A-OK with me. I agree it is a very viable option and one that we will absolutely consider.

    And we actually do have an appt in first week of June in Detroit. Looking forward to that a lot.

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  9. Hey...Hope the weekend was OK for y'all...Colby is on Keppra, too (in addition to the Trileptal, Zonegran, Banzel and Clonazepam)...I am hoping that is one of the drugs that we will be weaning off of if/when the Banzel takes hold...It never helped Colby, but there were no side effects, either, thank goodness...And you must remember, they have different types of seizures...So, hopefully, the Keppra will take hold and do the job for Bennett...I know others that it has really helped...Will be thinking of your family...Keep us posted...Cyndi (Colby's mom)

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  10. Hey. You know I hope that magically one of your drug combinations does work cause even though FCD is often drug resistent it is not 100% so. Vigabatrin did not work for us. Topomax did help a bit but not enough. I'm hoping surgery does the trick for us but I'm worried it won't because of the size of the FCD and the proximity to the motor strip.

    As regards EI, we have speech therapy, occupational therapy and developmental therapy once a week and after the surgery I will be requesting a physical therapy assessment. It might seem like a lot but I want to take care of the deficits which the brain has the most capacity for learning. EI only goes to age 3 so they will start the transition to the school district in the next four months. That is scary to me. Hang in there. Believe me, I know its not easy.

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  11. Cyndi:
    Thanks. Tough weekend for you, sorry to hear about the fall in bed.

    Sinead:
    Yeah, I am not hopeful about ANY medication frankly. I should be but am not because of the diagnosis. I don't know everyone's story, but I have yet to find (I believe) a case where there was FCD with seizure freedom with medication only. I might be wrong, but I do not recall seeing a single one.

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  12. Oh and Danielle, sorry I flaked.

    Heaviness...GREAT word to describe my day to day. Nothing feels light at all anymore. Nothing. It's not exactly depression, though that is part of it...it's heaviness. Love that phrase.

    I'm still waiting for my first cry-free day since this all began. I've had a couple where it wasn't flowing, but the tears were still right at the rim of the eye but I sucked it back before they flowed over the lid.

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  13. well shew...glad you're not a hater! *wink*

    ...danielle

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