Friday, February 7, 2014

Autism & Epilepsy: I Gotta Stop Googling Looking For Miracles & Disasters








(originally written & published on February 7, 2014)





I'm not sure what this post is about yet.  This is gonna be like one of those Autism Daddy posts from the old days that were long and rambling and went off on tangents.  I hope you can keep up...

Anyway here goes...

I was just thinking back this morning, remembering how nervous I was for Kyle to get the VNS Surgery for his epilepsy this past spring & summer.   (If you don't know about his VNS Surgery read this)

The reason I was nervous?  I started googling & up came lots of horror stories about botched operations, vocal paralysis, kids who's seizures got worse / more frequent, all scary
scary stuff.  (I previously wrote about my bad habit of googling meds and finding scary stuff.  You can read that here)

My wife was all set to get the surgery for Kyle as soon as we met the neurosurgeon in May.

But me? I tortured myself and her all summer, googling, and reading, and joining fb pages and scaring the sh-t out of myself.  All the while Kyle was having more & more seizures and the meds he was on for the seizures were making him more and more tired and it was becoming more and more obvious that he needed the surgery.

But I was still scared sh-tless.  And I was driving the wife crazy.


OFF ON A TANGENT

By the way, wifey thinks that I paint myself in too positive a light on my AD page & blog.  When y'all are fawning over me ("you're wife is so lucky!") she's saying to me "you're not telling them the whole story!"

And she is correct.  The whole story is I am not easy to live with a lot of the times.  

And this VNS Surgery indecision by me is a perfect example of me driving myself and my wife crazy for MONTHS...  It literally took over every part of my brain sometimes...  Yeah, ol' Autism Daddy is no picnic to be with a lot of the time...

But that's a tangent, ok so back on track..


So before the surgery when I asked all of Kyle's doctors about all these horror stories and all these side effects I'd read so much about, they all looked generally surprised.  The neurosurgeon had never even heard of some of the things I was mentioning.

That's how freaking rare they were.

And I realized I have to stop googling and just trust the excellent doctors & medical team we have working with Kyle.  I live in the NYC Metro area and Kyle has a great neurologist and we even saw a "Top Doctor" in Manhattan doctor for a second opinion about the VNS Surgery.

And if the top NYC neurologists were recommending VNS Surgery and saying that after trying 3-4 meds if you're seizures aren't under control, the odds of you finding a med that will work are slim to none.  If the top docs are saying this, shouldn't I listen to them and not google?


So Kyle had the surgery in August and is doing much much better.  We were able to get him off of one of his anti-seizure meds (the one that made him the sleepiest / most zombie like, "Onfi") and he's having a lot less seizures.

No miracles.  He's still having quite a few, but not nearly as many as before.

And that is EXACTLY what the doctors prepared us for.  They said not to expect miracles.  We were told that the VNS device works on 50% of the people that have it implanted and in those 50% it reduces their amount of seizures in half.

Some people did have miraculous results, but they were a tiny minority.

So they weren't setting us up for a miracle and we weren't expecting a miracle.  And we got what we expected.  A nice reduction in the amount of his seizures...


And all this got me thinking about all the other things we've "tried" on Kyle over the years, mainly for his autism (which I wrote about here), and how they all could be thought about the same way....


I've come to the realization that all of it that we tried and that many autism parents try along the way...

the GFCF diet, the B12 injections, the supplements, the hyperbaric oxygen chamber / HBOT, etc...

All of it only works "miracles" in a teeny-tiny percentage of the kids who try them.  And for the majority of kids maybe they'll have some improvement or no improvement at all.

In my opinion, the miracle treatments in both autism & epilepsy only happen in a teeny tiny percentage of people...

And on the other end of the "spectrum"... all the horror stories you read about when you google any medicine or operation related to epilepsy or autism.  I'm now pretty convinced that those horror stories only happen in a teeny tiny percentage of people.

Yes, many of the autism & epilepsy meds have side effects that affect a lot of people...but they're of the diarrhea, nausea, constipation, tiredness, hyperactivity, appetite up or down variety.

But what about the scary ones?

The ones you hear about on the anti-depressant ads on tv --

"suicidal thoughts", "abnormal bleeding", "liver damage", "erections lasting more than 4 hours"-- (oops wrong med!  i wish i had that problem! :-)

Those only happen to a teeny tiny percentage of the people that use them.

Off on a tangent again..., boy oh boy, if people picked their meds based on tv commercials, NOBODY would go on meds.  They have to list EVERY freaking side effect to cover their asses.  If I heard the commercial for my antidepressant Wellbutrin (which I wrote about here) I'd probably have never gone on it.  And it's helped me a lot... No side effects, no miracles, just the right balance...

Tangent over...

So, in my opinion, the cases where a certain drug or treatment or protocol or operation miraculously helps a kid with autism and/or epilepsy?...those cases are EXTREMELY rare (a teeny tiny percentage).

And the cases where a certain drug or treatment or procedure or operation irreparably harms a kid with autism/ epilepsy  ...those cases are also EXTREMELY rare...


But then why do we only read about the miracles & the disasters?  Cuz that's how the Internet works...

ANOTHER TANGENT...It's like the people who post reviews on Amazon.  the only people who post reviews are the ones that are EXTREMELY happy and LOVE the product!  And the ones who ABSOLUTELY HATE the product!  And in the middle are the masses... who think the product is ok, but have nor freaking time to write a 2 and 1/2 start review saying "feh it works fine i guess"

ok, tangent over...where was I?

So both the miracles & the disasters are extremely rare...

And in the middle is the vast majority of autism & epilepsy kids.  And in the middle is my son Kyle.


Some things helped him a little, some things things got in his way, but there's been no miracles and no horror stories to speak of... (KNOCKS ON WOOD)


So my take away from all this is that I need to put the damn computer away and stop googling stuff every time a doctor prescribes a new med!  If the NYC top doctor says the most common side effects are constipation & sleepiness, take that at face value and leave it at that.  Cuz if I start googling I'm gonna find some freaking horror story about that one kid who freaking DIED cuz of that med.  (I'm positive I could find you a story about a kid dying from Tylenol if I googled hard enough)

So I'm gonna try my best to put the googling aside and just listen to the great medical team we've got working with Kyle.  They've done right by us so far.

And while we'd love a miracle some day we'll gladly stay in the middle with little improvements along the way...

Whew...  I think I'll end it there.  This one was all over the place.  Not sure if it makes any sense.  Hope it does!

OVER AND OUT!

:-)


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  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

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11 comments:

  1. I got it, Autism Daddy...you're good.

    ReplyDelete
  2. I'm like that too. I am very non - compliant with my own meds because Ii scare myself. As a result I suffer. I also get scared about Charlie's meds. Even though they are helping him I'm convinced they are causing this or that. I've had to force myself to not try to manage his meds. That's we have a psychiatrist. I keep telling myself -- hands off.

    ReplyDelete
  3. Lol totally agree and " get it " . I used to google everything , I would re -word it several times cause u dont get everything ! And sometines u get porn ... now I tell " newbies" trust ur instincts, trust ur doctors, if u cant than switch doctors or get second opinions. STOP GOOGLING , STOP SCARING THE SHIT OUT OF YOURSELF! We have all had reactions to some kind of med, if we all FB'd it no one would take a meds ! :)

    ReplyDelete
  4. First off- I love your blog- read it all the time. Big fan and fellow autism parent.
    I totally get your point about not "googling yourself crazy." Been there, done that.
    However, I feel compelled to address your comment about-
    "I'm positive I could find you a story about a kid dying from Tylenol if I googled hard enough"
    ONLY because kids and adults alike die from Tylenol ALL the time.
    In fact, Acetaminophen is the leading cause of sudden acute liver failure, and acetaminophen is the active ingredient in Tylenol.
    Tylenol alone can cause irreparable liver failure and death, and more commonly, deadly interactions between Tylenol and alcohol or other prescription meds are to blame.
    Just wanted to set the record straight for your readers. Alot of folks think Tylenol is totally safe and that's why these deaths are totally preventable.
    Sorry to nitpick, but I myself lost a loved one to an accidental lethal OTC Tylenol and Tegretol combo.
    Thanks again for your awesome blog- it's nice to know we're not alone out here in Autism Mommy/Daddy land.

    ReplyDelete
  5. Just so you know I'm not an alarmist... :)

    http://www.huffingtonpost.com/2013/09/24/tylenol-overdose_n_3976991.html
    AND
    http://www.theverge.com/2013/9/22/4758880/history-acetaminophen-drug-regulation-fda-tylenol
    AND
    "Data compiled by the U.S. Food and Drug Administration has linked as many as 980 deaths in a year to drugs containing acetaminophen. In addition, FDA reports of death associated with acetaminophen have been increasing faster than those for aspirin, ibuprofen and many other common over-the-counter pain medicines.

    Data obtained from the U.S. Centers for Disease Control and Prevention show that more than 300 people die annually as a result of acetaminophen poisoning.

    Beginning in 2006, according to the CDC, the number of people who died after accidentally taking too much acetaminophen surpassed the number who died from intentionally overdosing to commit suicide.

    The American Association of Poison Control Centers (AAPCC), a nonprofit that receives federal funds, shows about 113 people dying each year as a result of overdosing on medicines with acetaminophen. Since 2006, acetaminophen has accounted for more fatalities than all other over-the-counter pain relievers combined, according to AAPCC data."

    ReplyDelete
  6. Ha! I love your post and God you're poor wife (be nice to her) It's hard being a autism rock star Mommy! We totally get the "middle road" results your talking about and I think people need to be more realistic about their expectations and they will be happier! I was going to end by being my usual smart ass and leave a google link to "Tylenol related deaths in children" but I see some one beat me to it :)

    ReplyDelete
  7. I think we all go through that. We live in a paranoid society (sometimes with good reason) and it really is smart to google everything just in case...or maybe that's my anxiety issues saying hello. One of the hardest parts of all of this to me is the 'new advice' that crops up every once in a while. Someone says 'Oh hey, Have you tried this essential oil blend on his feet on the full moon while he looks at a fish tank? Works miracles on language development!' and the next thing you know I'm headed to Petsmart...you know just in case. The true horror of this disease to me is when the stasis hits and while you have miracles in one area you get a disaster in another. Breaking even is sometimes the worst feeling ever.

    ReplyDelete

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