Wednesday, April 6, 2011

Under Construction


Yeah, so sue me. I've decided to start screwing around with the blog.

It's about damn time.

So expect to see radical changes as I experiment. Just wish I had some good quality reefer or something so I could come up with some REALLY wacky stuff. Or I'd settle for some halfway decent web skills.

And oh yeah, more good news...Bennett had an appointment today with a Behavioral Pediatrician. Only took us 4 months to get THAT going.

Clarification: It only took a few weeks to get the appointment through Cleveland Clinic, because they rock. We waited months waiting on Nationwide Children's Hospital and as always they failed to deliver so we got tired of waiting and went to Cleveland. The doc up there thinks that Bennett has ADD in addition to everything else.

Joy.

You hope to pass along stuff to your kids. You SO do not want them to be burdened with YOUR genetic crap. Welcome to my Hell sons...sorry.

Anyway, the Doc wants to put the boy on Ritalin.

Hmmm..this is scary to me. And...how does this address the thing with him biting the shit out of his arms? Or will it? But Ritalin? At his age? And how can I know for sure that it actually IS ADD? I don't even know for sure what the root cause of all his issues are? The Pertussis that activated the Seizures to begin with? The Initial Misdiagnosis resulting in prolonging the Infantile Spasms rather than moving to surgical options immediately? The Tumor itself? The Removal of Part of His Brain? The Autism? As Yet To Be Determined?


How I'm supposed to know the right decisions to make for these boys is beyond me. Sometimes I feel like I am hanging by a rope over a bottomless pit and it is just gonna take a few more things for that rope to break and down I go.

OUT.

12 comments:

  1. I know that hole. I've seen a shallower version of it under my toes. Although I probably weigh more than you so it would take less of a burden to strain the rope. Let's just say, a less serious situation involving surgery and months of immobility (a torture of unimaginable proportions for Dude)to 'fix' the tortion in his femur, that I backed out of at the last minute. To make a long story short (too late!)I felt crowded and uncertain when the date was moved up 3 months. I was asked to balance a very cosiderable amount of pain against 'fixing' something to make him more 'normal', that didn't seem to bother him anyway. Still don't know if I made the right choice... Still roll it over in my mind often. I do the best I can with what I've got. It's rarely satisfactory, but it'll have to be enough. I can't even understand how I'm the best one for the job, Gitche Manitou help him... I'm what he's got

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  2. Oh, I know this feeling. I am, in fact, the only person in my family who will make any kind of decision about anything. Like when I decided we needed to change Charlie's seizure medicine and everyone just said, "whatever you think is fine." I, of course, struggled with the idea that I could be wrong, that my son could have a seizure and die, and on and on. It's tough.

    As far as the medication goes, Ritalin doesn't scare me. When they start mentioning Adderall, I'd think long and hard before pulling the trigger. If the risks are low, I'm usually comfortable experimenting with to get the best possible outcome for my kid. But, you're the Dad and you know better than anyone (I promise).

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  3. Hi, My 9 year old son has epilepsy which typically involves two grand mal seizures per year. After the epilepsy was diagnosed, he saw the behavioral specialist at Cincinnati Childrens, and then he had ADHD. I know that ADHD has the same symptoms that are typical with temporal lobe epilepsy, such as inattention and lack of impulse control. But the question to me is because these symptoms also fit the larger, more life threatening epilepsy diagnosis, why do we have to go there and also give him ADHD? Now, his "ADHD" medication because of that label is out of the assistance we receive from BCMH. Whereas if the medication was classified as needed for epilepsy it would be covered.

    I do not think my son has ADHD. That is a much lesser diagnosis than epilepsy, which can be life threatening. But because of the epilepsy, my son's brain can run slow and the stimulant medicine is a true help for him. It can't hurt to try it with Bennett and just see. You can quit it at any time. It does really help my son, but I think it would be fair if it were not only classified as an "ADHD" drug but also as a treatment for kids with epilepsy, which would bring more coverage and also be more truthful.

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  4. Lots and when I say lots,I am so not kidding,experience with my little guy Joe and meds for ADD/ADHD/ODD/OCD/... you get the idea.Feel free to message me if you can think of any questions.Not an expert but we have been at this awhile and through it, I have garnered a bit of experience.More than I care actually.

    In the mean time,thinking of you while you are hanging there and confident you will find your way.

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  5. Ditto Sarah- I think it's all related to the epilepsy. I thought long and hard before we gave Austin ADHD meds, but in hindsight, it was the best thing we ever did. The difference is night and day. He's more calm and grounded. He can focus and I don't mean school work, but it's like he can "see clearly". Things make sense and there is no "background white noise" distracting him.

    That said, something is off now and I think we'll be adjusting meds. The nice thing is, you know pretty quick when you find the right med and the right dose.

    good luck!

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  6. I HATE how many medical decisions rest on me. It is impossible to know the right answer especially when you don't even have a medical background. But you just got to go with what feels right at the moment. I've been on the fence to start Sophie on ADHD meds for almost the last 2 years. I don't know why I feel so unsure about the ADHD meds. The side effects cannot be any worse than the umpteen seizure meds that she has been on.

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  7. Yesterday, at the neurosurgeon's, I asked the doctor if the lesion regrowth in my son's brain was really an AVM. To which he responded "Does it matter what we call it? The vascular abnormality in your son's brain causes him to have strokes. It needs to be treated." (I am paraphrasing a bit. He said it in doctor words that I don't remember.)
    Does it matter if Bennett has ADHD/seizures/yet to be determined causing his behaviours? Or, is the important part that there is a class of medications that can help?
    Do you regret the things that you tried, or the things that you didn't? Personally, I regret the things that I didn't.

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  8. Forgoct to check the follow-up button :)

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  9. When I told our neuro at Trevor's last appointment that I suspected he had ADHD...

    Her response was "Of course he does". Like, duh. Followed by emphasizing that this is connected to both his epilepsy & brain surgery.

    On another note: I'm excited to see how you spiff up around here.

    xo

    ...danielle

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  10. First off, I hope people don't mind me effing around with the layout. I'm sort of liking the drab look so far. It fits. Nothing overtly colorful, but nothing too dark either. BUT, who knows, it might be rainbows and puppy dogs tomorrow.

    But it still needs some boobs and I need to get to that later.

    Anyway...work in progress...

    stagerat:
    That's what HE said. BaDUMbump! I always question my Fatherhoodedness Quotient even under 'normal' circumstances. I still eat stuff that falls on the floor. So how am I supposed to tell my kids not to when I DON'T EVEN believe in it?

    Katy:
    I might not go THAT far. I think Mom gets that title. But I think that Ritalin in a small controlled trial might be OK to try. Besides...it isn't so much the fact that we are trying a drug I am so bummed about...it is the fact that you want to pass along what is good in you to your kids, and when you know that, hereditarily, you have 'given' them something, a part of you, that has been so difficult in your own life, you just feel like you fucked them over somehow. I know a lot of parents feel that way in this new world I find myself in. I felt that way about his tumor too. That I gave him fucked-up genes. But that's also my Guiltburger doing a lot of the talking.

    Sarah:
    I never realized that an insurance company, though they be Evil Incarnate in most cases, would not cover an ADD medication. That is just, well just wrong. Which reminds me, I have to write to you all about my mother and an experience she just had with an insurance company that will make your skin crawl off your body, it is that despicable.

    I'm glad the medication helped your boy though. That's promising indeed.

    Heather:
    Well, you should write a book. Or two. Or hell maybe even three. A dozen?

    Speaking of meds, you can now add another to my ever increasing total. After a shrink visit today he had no choice but to add another anxiety med to my regimen, my panic attacks were becoming too severe.

    I think I know what will kill me though. Unless it is a random meteor or something, probably gonna be this anxiety/panic thing.

    Or this reflux, which I have GOT to see my regular doc about. Feels like I am burping up needles.

    Jen:
    You mind if I occasionally bug you if I have any questions too? I know you also have had your fair share of trials on these meds. What seems to strike you as being 'off'?

    Elaine:
    Oh c'mon...it's as plain as that button nose on your face. You have had your fair share of getting your decisions shat on by Fate or whatever you wanna call it, I'd be skeptical too, and skiddish when it comes to making any call on making a change. And no one can blame you a BIT. But when the time comes and it is necessary for you to act, you will and you will do so with the same gusto and fervor and intensity you always do. I have no doubt of that whatsoever.

    You're a scrapper.

    Kris:
    This is, no question, the second wisest thing I have read all week. You got beat by ONE thing, but it was by Winston Churchill, so don't feel too bad, it was a quote I'd never read of his before.

    But still that is freaking YODA level advice right there. Thank you for putting it so Jedi-like. Really puts it in perspective.

    I am both humbled AND grateful.

    D:
    Did you bitch-slap his condescending ass for that snarky delivery?

    And thanks...I just hope I can pick a style and deliver something I like and other people don't puke their guts out over.

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  11. I would try the medication. If it doesn't work, stop it. If it works, you'll know. Just don't go back and forth, wondering if it's the full moon or an impending virus or something he ate or something you said. If it works, it works.

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  12. Agreed. We started it this morning. Not sure when we are supposed to 'know' if it works or not or what we are even looking for, but we started it.

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