Plutonic mustard

Gracie loves riding in the car!

Gracie loves riding in the car!

I haven’t written a post in a while.  Just haven’t had the will, desire, or energy.  Plus, some people get upset about the things I say.  I thought long and hard about pulling the plug on this blog, but then I decided not to because I want to save the content.  Maybe Gracie’s sister might want to have these stories someday.

If people only knew what goes on inside of my mind, then they probably would be really worried.  I’m sure the same could be said for a lot of us, though.  I realize now that writing about our experiences is an outlet for me.  I’ve so much I want to talk about.  Anyway, here go some more of my ramblings…

Last Friday, Gracie finished her last GcMAF shot.  I think we did 21 shots in all, once a week.  Long story short, the stuff didn’t do a damn thing for her.  $900 down the drain.  That’s out-of-pocket, mind you, cause insurance isn’t paying for that!  Coincidentally enough, Gracie had an appointment with Dr. Udell the same day she received her last shot.

So my mother and I make the two plus hour trip to Davie, FL to see Dr. Udell.  During our visit with the doctor, he tells me about another product that’s supposed to be more effective than GcMAF.  I didn’t catch the name of it, nor did I care enough to ask him to repeat the name of it.  But it’s a $100 cheaper than the GcMAF (so $800), he says.  Then Doc recommended we get a full genetic work-up on Gracie.  That only costs $1,000, I think.  The work-up might tell us what is wrong with Gracie on a molecular level, what chromosome(s) isn’t/aren’t functioning properly.  So we find that out, then what?  Hope and pray Big Pharma comes out with a miracle drug to address my daughter’s specific issue?  Oh, and he mentioned hyperbaric oxygen therapy too.  Almost forgot that one.

I tell Dr. Udell I’m not interested, that I’ve reached the end of my rope, that I’m finally starting to accept things for what they are.  Gracie isn’t getting any better.  Dr. Udell asks me not to give up.  He manages to walk me back from that figurative cliff a little.  I’m not completely done, but I’m almost there.  But for now, I’m not doing the GcMAF alternative (whatever it may be), nor am I getting a genetic work-up done.

Dr. Udell then talks about Gracie’s latest lab tests.  We learned that she’s now at the high end of what’s considered normal for vitamin D (initially, Gracie was vitamin D deficient).  Fortunately I was spotty about giving the vitamin D to her, and had stopped giving it to Gracie when I ran out of the stuff.  Too much vitamin D will make you sick, if you didn’t know that already.

Then Doc gives us the bad news:  Gracie’s blood sugar is too high, and he’s concerned about diabetes.  Says we’re going to need to give her a glucose tolerance test, and tells me all that the test entails.  Suffice it to say administering the test is not going to be fun, especially with someone like Gracie.  And some people wonder why I’m not so chipper all the time…

Near the end of our visit with Dr. Udell we learn about two more supplements called NeuroProtek and mitospectra.  So I agree that we might as well try these too.  We’ve tried just about everything else, it seems.  Do I know how, exactly, they’re supposed to help Gracie?  Not really.  Someday I’ll get around to researching the stuff.  Maybe even as soon as I publish this post.  If any of you are curious, Google it, knock yourself out.  🙂  I leave it in Doc’s hands now.

I can say, however, the NeuroProtek is in a capsule, and consists of a gel-like substance.  Since Gracie cannot swallow pills, I had the pleasure this morning of squeezing the contents out of a capsule into some applesauce.  The stuff is like radioactive mustard!  It stains everything!  I give Gracie a spoonful, Mmmmm, right?  Right away she gags.  Heck, looking at it made me want to gag.  I manage to get her to the bathroom in time for her to vomit all over it, instead of her bedroom.  Happy times!  Forgive my sarcasm, but I’ve a dark sense of humor, it seems.  Was I mad about the mess?  Nah… I was cursing under my breath about the chintzy toilet seat we have in our girls’ bathroom, while cleaning it.  I chuckle at myself, now that I’m thinking back on it.  My younger daughter looks at me funny, wanting to know why I’m seemingly laughing at nothing.  How do you even begin to start that conversation?  “Well, your sister was gagging on Plutonic Mustard, a flavor enhancer for strawberry applesauce, and did you know your toilet seat is broken?”  Guess I better use a higher applesauce to NeuroProtek ratio next time.

It just now hits me, that maybe I should be more worried about Gracie possibly having diabetes.  I mean, sure, I certainly don’t want that to be the case, her having diabetes.  I realize I’m acting the way I do because I’m just numb.  Hard to get worked up about a lot of things these days.  I just take things as they come, and deal with it.

Finally, I just want to say to those people out there in the world, to my family, friends, and caring strangers, I appreciate the support.  And I thank those of you who thought to contribute to our cause.  Although we are no longer pursuing stem cell therapy, the donations we did receive were put towards other therapies, purposes for Gracie.  On the subject of stem cell therapy, Dr. Udell told told us about a family that put their child through six stem cell treatments, at a total cost of $120,000.  The mother claimed her child was doing much better, until Dr. Udell pressed her to be specific.  “How is she doing much better?”  he asks.  “Is she talking?” Dr. Udell asks.  The answer he received?  No.

About graciesautism

Father of Gracie, who is autistic, and her sister Gabrielle (who is a typical). Sharing our stories in Gracieland.
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7 Responses to Plutonic mustard

  1. LeeAnn Disher says:

    Gotta say I don’t like your doctor. Why suggest all this bullcrap. Hang in there! And if people want to judge you, screw them. They have no idea what you guys have been through. Love you both!

    >

    • In all fairness to Dr. Udell, he’s as frustrated as the rest of us. He’s a renowned doctor, with decades of experience. Late into his career he decided to dedicate his practice to helping families with autistic children. And he makes no money from the supplements he provides, selling them at cost to his patients. Thought it worthwhile that I mention this.

    • Thanks, LeeAnn! I, myself, used to be guilty of passing judgment on other parents, whose methods I didn’t agree with. But now that I’ve been in their shoes for a similar length of time, I understand them… a story for another post, possibly.

  2. Cheryl Smiddy says:

    Love the picture of my “Gracie Girl” in the car, she looks happy! You know in the all the years since Ty was diagnosed we’ve seen so many supplements, shots, special diets, and therapies peddled what I finally figured out was that most of them were just “snake oil”. However for the overstimulated meltdowns he had for years brush therapy was a God send. I know it it’s easy to lose hope and you and Kristine have had a way harder journey with Gracie than we have ever had with Ty . It’s ok to get crabby , frustrated , and sick of people’s opinions and advice . I pray for you guys often , I may not be able to fully comprehend the depth of your struggle but I can certainly relate to the struggle itself. Give Kristine a hug for me and tell her I think of her often.
    You are all in our hearts.

  3. Christy says:

    Dennis– I read your blogs and think I wish I could do more for you and your family. I know that you and your wife do what you can because it’s what you are supposed to do. I do not pretend to have the answers but I do know that deep down your daughter knows you love her and you are fighting like hell for her.
    You do what keeps you sane– blog, train, cry… but know that you have a friend from the old neighborhood that is keeping you all in her thoughts and prayers. We can all learn from you and your family… unconditional love when the Times look so bleak… hugs!

    • Thanks, Christy! It is good to hear from old friends. I appreciate your well wishes and empathy. I sure miss the old days, hanging out at the Hunter pool. I remember you, LeeAnn, and Cheryl too, whenever I think of those summer days gone by. Lots of fun back in the day, eh? 🙂

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