Lead and mercury test results

Posted on September 30, 2012 by graciesautism

A few weeks ago we had Gracie’s blood tested for lead, mercury, and arsenic levels, per the Stem Cell Institute’s request.  Good news:  no lead or mercury was detected.  Detection limits were 1 ug/dL.  That’s 1 microgram per deciliter, or .001 milligrams per 100 milliliters. 

Normal lead blood levels range from 0-9 ug/dL, however, lead blood levels in the range of 5-9 ug/dL have been associated with adverse health effects in children 6 years and younger.  Normal mercury blood levels range from 0-14.9 ug/dL, and for arsenic the normal range is 2-23 ug/dL.  Gracie did have arsenic present in her blood, however, her level was only 8 ug/dL.

Let me put this into context for everyone… imagine a vial about 3″ long and 3/8″ in diameter (76 mm long, 10 mm dia.)  That vial holds only 3 mL, so you need about 33 vials to hold 100 mL of blood.  Then, there’s about 5 mg in a teaspoon (yes, I know these are different units for measuring density and volume, but bear with me!).  Now there are 1,000 micrograms (ug) in a mg.  So take your teaspoon, divide it into 5 portions, and divide a fifth portion by 1,000.  That’s one microgram (ug).  A child’s lead blood levels should not exceed 4 ug’s in a volume of blood that would fill 33 vials!  Very toxic stuff, indeed.

Many alternative treatment advocates and some scientists think that at least a subset of autistic children have trouble with methylation.  Methylation has to do with chemical processes in the body where a methyl group (a molecule of  one carbon and three hydrogen atoms, CH3) is added to or removed from a compound or other element, and some of these processes detox the body of poisons like lead and mercury. Fortunately, Gracie doesn’t appear have methlyation issues.

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Walk a mile in her shoes…

Posted on September 28, 2012 by graciesautism

Where are you going, Gracie?!

How ironic it is that we wheel Gracie around everywhere we go in public. I say this because about a month ago she has started up a new self-stimulatory behavior:  pacing.

I captured a photo of her walking (see above), but must apologize for the poor quality of the picture.  I attempted to take the  photo a half a dozen times while she was walking before settling on this one.

Gracie paces back and forth for hours down the hallway to the girls’ bedroom and back into the kitchen, through the kitchen, into the family room, through the family room, and all the way back to the hallway.  I think it drives my father and Kristine crazy.

Two weeks ago my parents had to watch Gracie while Kristine and I were at work.  Gracie was out of school due to her toe blisters and not feeling well.  She paced all day long at my parents house too.

She must be walking for miles, we thought.  So on the day I wrote this post, just before dinner, I’m watching her pace and I count the number of steps she’s taking.  On average, it was 20 steps at a clip of about 12 steps every 10 seconds.  She does this for 3-4 hours a day.  Gracie’s 5 feet tall, meaning she should cover a mile in about 2,514 steps.  I break out the calculator and determine she’s walking about 6 miles a day!  In our house!  

Crazy… I wonder what Gracie will start doing next.  Don’t know what it is, but I can guarantee she’ll think of something else to start in on.

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Toe blistering

Posted on September 23, 2012 by graciesautism

Ouch!

As the Ronald McDonald plate eating crisis subsides, Kristine is changing Gracie’s diaper and notices large blisters on almost all of Gracie’s toes.  One blister popped, leaving a relatively large flap of skin hanging off the middle toe on her left foot.  I trim this skin off before finding out that’s a no-no.  I did go on www.webmd.com to learn that it’s recommended to drain blisters if they’re in a painful area.  So I sterilize a needle, pierce the other blisters, and drain them.  Then I cleaned her feet with a saline solution, placed an OTC antibiotic ointment on her middle toe, and bandaged this toe.   Had to modify a large bandage because  I never seem to have the right @#$% bandages! 

No, I didn’t forget to put her other sock on…

Because we were worried about Gracie getting an infection, and knowing that she’ll try her best to remove the bandage, we put a sock on this same foot, put on both of  her strap-on sandles, and taped the sock to her leg.  If you don’t take the precautions we took, good luck getting Gracie to leave her bandages alone.  In a previous post I explained we have to use New-Skin liquid bandage to keep Gracie from picking at her scabs resulting from scratches, bites, etc.  However, in this case we needed to use bandages.

How did Gracie get the blisters?  Good question.  At first I thought she did it to herself, pressing and rubbing her toes against our dining table.  Gracie has worn the varnish off of parts of the dining table doing this.  Kristine, having a better instinct than me about these things, called our pediatrician and learned blistering is a sign of an allergic reaction to Cefdinir (the antibiotic Gracie is taking for her swimmer’s ear).  Cefdinir is the generic form of Omnicef.  Later, the pediatrician requests to see Gracie.  The latest diagnosis?  It’s viral!  I guess the cause isn’t so important as long as we take care of Gracie’s foot properly.  The doctor prescribed an antibiotic cream, Mupirocin, and requested we keep her middle toe covered with a bandage.

Oh, and I almost forgot to mention us repeatedly having to put her sock and shoes back on, replacing the bandages, and taking the bandages Gracie turned into chew toys out of her mouth.  The fun never ends.

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Ronald McDonald and the Poison Center

Posted on September 22, 2012 by graciesautism

Would you like some plate with that?

Last Saturday I was in the kitchen while Gracie was eating her breakfast, and I heard sharp cracking sound.  I thought it was her sippy cup hitting the wood floor in the dining area.  A few minutes later I went to check on her, only to discover that she had bitten off a piece of a Ronald McDonald plate!  These plates are made from some type of very hard plastic.  It’s amazing Gracie hasn’t broken any of her teeth. 

So I hurry and get a wooden spoon to pry her mouth open, and see that she’s chewed up the piece into small shards.  With her mouth pried open, I remove the plastic using my fingers, praying she doesn’t bite me.  Then I call the Poison Center, resigning myself to another possible trip to ER.   

Anyway, I want to freak out and start yelling at the Poison Center operator, but I keep my cool.  The operator asks, “Is she drooling, does she have cuts in her mouth, is she breathing and swallowing normally, has her behavior changed since ingesting the plate pieces?”  No, a tiny cut, yes, and no.  “Okay, she’ll likely pass them,” the operator says.  All the while, Gracie is crying in the background, as she’s been doing for the last few days because of her double swimmer’s ear.  I’m thinking I should put the Poison Center’s phone number on speed dial, as many times as we have called them.  By the way the center’s number is:

1-800-222-1222

If you potentially have a need for this number, write it down and put it somewhere it can easily be found.  In our case we have this number on our refrigerator.  Finally, the link to the Poison Center is www.poison.org.  Some interesting information on that site.

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Gracie loves to swim

Posted on September 16, 2012 by graciesautism

Here’s Gracie with her grandmother and sister, swimming in a pool during a visit to St. Augustine.  What a neat place to visit!  Anyway, Gracie absolutely loves being in the water.  We try to indulge her love for being in a pool, but it’s scary.  I’m sure many of you know that drowning is purportedly the #1 cause of death in persons with autism.

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Sister bond

Posted on September 16, 2012 by graciesautism
Gracie’s birthday this past March

Hi!  My name is Gabrielle.  My sister Gracie was celebrating her birthday at her grandparents house.

I could tell by the looks on her face that she was ready to dig into her ice cream cake.

The hardest part about having an autistic sister is that she can’t talk.  I hope the stem cells work.

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The above was written by my eight year old daughter, Gabrielle, who is an awesome sister to Gracie.  From time to time Gabby will be contributing posts dedicated to their sister bond.

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Comment submitted on 2012/09/12 at 12:27 am

Gabby is a great sister, she understands alot about Gracie, Gabby as a 8 year old deals with alot. But handles it very well for her age. She is wonderful to he sister Gracie and accepts who she is. I give all my love to Gabby for caring for her sister Gracie. Gracie is a beautiful girl, loving and kind. Beautiful eyes and Beautiful curly hair. I love both of them with all my heart. Gabby is a special little girl. I love you Gabby, Love, Aunt Karen

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Dora lost at sea

Posted on September 15, 2012 by graciesautism

I should have known better.  Letting Gracie walk around on the Cocoa Beach pier with her Dora sippy cup was asking for it.  Before we could do anything to stop it, the cup goes sailing over the rails and into the sea.  Gracie had decided she didn’t need Dora anymore.  Those cups are coveted by us, as the really tough ones seem hard to find.

I know, I know.  Sippy cups at ten years old.  Gracie doesn’t understand the concept of drinking from a cup, glass, or straw.  She’ll either spill a cup’s contents all over the place or herself, crush and/or bite through disposable plastic and styrofoam cups, or throw the cup with the contents in it.  As for straws, Gracie thinks those are chew toys.

Gracie likes to cruise around in the kitchen, always looking in or around the sink for a drinking implement to destroy.  Everything should be put away all the time.  The dish soap, dish rags, bottles, cans, dishes, etc.  She’ll destroy all of it if it’s not put away.  Can never relax without shutting Gracie into her room.  Once she took one of my favorite pilsner glasses from the sink.  When she saw me coming to take it from her, she launched the glass into the air as she ran away.  Naturally, Kristine and Gabby come running into the kitchen after hearing glass shatter onto the tile floor.  Panicking, I yelled at them to freeze.  Thankfully, nobody stepped on any of the shards.  I see a future with no glasses in our house.

But back to the sippy cups, we’ve seen her destroy those too.  Because of her pica and/or need for deep pressure, she bites and chews on just about anything, including her sippy cup.  See below one of the cups she’s been working on.  Gracie has actually cracked the plastic on some of the less robust cups.

And going out to dinner or sitting at our dinner table with Gracie is always fun.  We have to worry about her throwing, I mean hurling her sippy cup through the air or down onto the table.  I’ve been hit in the head with those cups, both my mother and I have snatched them out of the air in mid-flight at restuarants, and have had our food scattered all over the place when Gracie decided to throw the cup down onto the table.  Once she aimed her cup at my mother’s armoire containing glass doors and all kinds of china inside it.  So glad the glass doors withstood the impact.  Gracie is now seated at my mother’s house with the armoire behind her.

Finally, if you happen to be strolling the beach in the Space Coast and find a Dora cup, let us know.

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Acting crazy and being stubborn

Posted on September 14, 2012 by graciesautism

Gracie watching the July 4th fireworks last year

Don’t let the title of this post mislead you.  Gracie is as sweet as they come.  If she hurts you, she didn’t mean to.  But she can be dangerous if you’re not careful.

When I change her diaper, I am very aware of where her feet are.  I worry about her kicking me in the face, especially seeing how she flails her legs around sometimes.  One time she did manage to kick me in the testicles, and I know of another incident where she kicked Kristine in the chest.  At other times I have to pin her arms with my feet while I change her, to keep her from reaching for her bottom when I’m cleaning her.  Fortunately, Gracie is cooperative most of the time.

Another thing you have to be cautious of is her head.  When you give her a hug you’re prone to being butted in the mouth with her forehead.  Both my dad and I have gotten bloody mouths for our efforts, and she’s managed to butt Kristine in the mouth too.

When Gracie decides she’s had enough, she simply sits or lays down and refuses to cooperate.  This is why we transport Gracie in a wheelchair whenever we’re out in public.  She’s in that wheelchair in the above picture.  I can honestly say I hate that thing.  But I don’t feel like carrying my 120 pound child around either.  Sometimes Gracie doesn’t even make it into the wheelchair without being coerced.  Getting her out of the car can be a struggle when she doesn’t want to move.  It’s amazing how strong she is. 

Also, note the blue plastic cord clipped to her shirt near her right shoulder.  Attached to it is her chewy, to prevent her from chewing on inappropriate objects.  If she does happen to put something in her mouth inappropriate, do not make the mistake of putting your fingers in her mouth.  I’m here to tell you that someone biting your finger really hurts.  So glad she stopped biting me when she did, as I was quickly getting worried.

Then there’s the squeezing and scratching she does, both to herself and to others.  I think when she’s frustrated, she does these things as a means of coping or getting the sensory input autistic children are said to crave.  She likes to squeeze our fingers while holding her hand, and has a way of working on your finger joints that is painful.  For a while now we’ve walked with her by holding her wrist instead.  Always feel funny about how some people might perceive that, seeing us leading her around by the wrist. 

But we do feel like we have a better grip on her, holding Gracie by the wrist, as she’s prone to taking off.  By taking off, I mean a full-on run through a parking lot or the middle of her sister’s soccer game.  One time I watched my mother chase after her, and I have to say, it was kind of funny…

As for the scratching, that’s why we always have to make sure her nails are trimmed and kept short.  She’s scratched my face several times, and Kristine too.  I recall one incident where she scratched a school aide or teacher.  That person wasn’t real happy about it, but what can you do?

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Stink bombs

Posted on September 9, 2012 by graciesautism

Gracie’s bedtime prep kit

Ten years and counting of changing diapers… 

Since Kristine does boot camp on Saturday mornings, I’m charged with monitoring Gracie and giving her breakfast when she wakes.  Yesterday morning I checked her diaper to make sure Gracie is dry.  Diaper didn’t feel full.  Later, I checked Gracie again, even pulled down her pajama bottoms to check for blue lines in the diaper (indicates a diaper change is needed).  Nope, still good.  Fifteen minutes to a half hour later I smell something.  Oh my God, poop explosion.

I strip the bedding from the bed and the clothing off of Gracie, clean Gracie up while trying not to vomit, do a hand pre-wash of her pajama bottoms, and throw everything in the laundry.  So sick of this crap, no pun intended.  Last week I searched the internet for a solution to our bed soiling problems, and I think I’ve found it:  http://www.drybuddy.com/.  A sensor that detects urine and sends out an alarm to the caregiver!  Can’t wait to get it.  Why didn’t we think about something like this sooner?!

Now that I think more on this subject, the whole going to the bathroom thing has been quite a challenge.  It’s as if we need to add armor to her bottom to prevent her from causing mischief.  To this day, Gracie must wear onesies to keep her from pulling her diaper off.  Then we had to add shorts with a drawstring to keep her hands out of her diaper (see bedtime outfit above).  Nothing like starting your day with having to clean poop out of your child’s fingernails.  Recently Gracie figured out she can get into her diaper by reaching up through the bottom of her shorts.  For fun she has starting tearing up her diaper, tracking bits of diaper material as she walks about the house.  May need to switch from shorts to sweatpants.  Or cloth diapers, but I just know Kristine isn’t going to sign up for that, and I wouldn’t blame her.

Barricading Gracie’s closet

And God forbid you forget to barricade her closet with her dresser (reference picture above).  Otherwise Gracie will pull out the container of wipes and strew chewed-up wipes about her bedroom, pull out all of her clothes and diapers, eat her butt cream, etc.  And if she can’t get into the closet, she sometimes resorts to pulling all of her clothing out of her dresser, but she hasn’t done that in a while now.  One time she got the talcum powder out of her closet.  By the time we realized our error, Gracie had emptied the container of its contents all over herself and her bedroom.  I had images of Scarface snorting powder and Casper the Ghost at the same time.  When I told my father about it, he and I had to laugh about it.  Crazy.

Anyway, we tried toilet training a few years ago.  Kept a log of when she did her business, in an attempt to establish a pattern.  Sat Gracie on the toilet every 15-20 minutes, only to have there sit and look at us like, “Why are we doing this?  I’m perfectly content with diapers, thank you.”  After a couple of weeks we gave up.  Lately I’ve been thinking to try again…

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Beds and trampolines

Posted on September 8, 2012 by graciesautism

Appears so peaceful when she’s sleeping, doesn’t she?  It seems I never really stopped to consider how much Gracie’s autism affected things, until I starting sharing our story… 

Our house, for example, has been Gracie-proofed, to the extent necessary for now.  Always a work in progress.  A few months ago she turned her bed into a trampoline, jumping up and down until she broke the wood frame in the box spring.  So, my father and I, being handy and all, repaired the frame and reinforced it.  Wasn’t too long after that before she broke the frame again, and one of the bedframe wheels.  The wheel post then ground its way through the brand-new Pergo floor my dad and I installed earlier this year, while Gracie continued to bounce merrily away.  Yeah, I was a little aggravated, but I worried about her flying through her bedroom window during her trampoline sessions.  Was considering closing the accordian style storm shutters over her window. 

Oh, but the challenges didn’t end there.  Sometimes Gracie would lay on her back with her legs and feet up on the walls, kicking away.  I was just waiting for her to put her feet through the drywall.  One night Gracie drummed the walls so hard that photos, etc., started falling off the wall’s other side in the adjacent family room, while Kristine and I were watching TV.

And if the bed was positioned up against the window, Gracie set to work on trying to destroy the horizontal blinds, or would go underneath the blinds and stand in the window on a 4-inch window sill.  Unless you saw her feet sticking out underneath the blinds, you wouldn’t have known she was standing in the window.  I imagine passers-by knew, though.  That must have been a strange sight for them, seeing a pajama-clad girl standing in a window with nothing for a background but the blinds.  Sort of like looking at a mannequin while window shopping.

Hmmmm…. how to fix these issues?  Gave this a lot of thought during the times I drift off (I do this a lot).  Not sleeping, but thinking and not really present.

Remember the memory foam mattress commercials with the lady jumping up and down, and a half-full wine glass on the other end?  Not really a lot of bounce on those beds.  Add a headboard and position the new memory foam bed in the middle of the room with the headboard against the window, problems solved.

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