Saturday, August 31, 2013

How we roll...Exjade style

I've been saying forever that I was going to do a post on how we take our Exjade with food.  It seems like I've written out what we do about a zillion times to individual people, so it makes more sense to just write it out once more here.  So, here it is.  Disclaimer:  this will be very, very boring to people who stop by here just to see cute pics.  It will be marginally interesting to people who take Exjade .

Why Not Juice Like Everyone Else?
First off, not everyone takes Exjade in liquid.  Sure, I'd say that people who take Exjade in food are in the minority, and it's way easier to dissolve it than do what we do, but the reality is that you've got to use the method that works for your kid(s).  Drinking Exjade would NOT work for Emmie.

But Does It Work in Food?
Taking Exjade in liquid is the only mode of delivery that is approved and on the label of the drug.  But not long after the drug was approved, it became apparent that it wasn't *exactly* the magic bullet that we had all been hoping for.  The reality is that for some people (otherwise known as picky kids), drinking Exjade may not be very palatable.  In fact, for some kids, drinking Exjade can be such a struggle that it leads to throwing up, tantrums, and flat out refusal to drink the drug.  I even heard a story about a 5 year-old who strongly prefers "the needle" (Desferal) to drinking Exjade. So researchers began testing Exjade in food. One published study has demonstrated the effectiveness of Exjade in food.  Cooley's Anemia Foundation reported the results here. In addition, I have personally met several kiddos who have had amazing success lowering their iron by taking Exjade in food.

So, What Happened?
Emmie wouldn't drink it.  That's what happened.  Emmie is not a juice drinker.   And, in any other realm that would be absolutely fine with me.  But with Exjade, juice--especially a juice with some "body" to it--does a pretty good job masking the "mouth feel" and appearance of the medicine.  I can't even list out for you all of the juices that we tried.  I even lowered my standards down to punches and any other kind of liquid sugary junk that might work.  Teas, milks, drinkable yogurt . . . we tried it all.  Emmie gagged, cried, I cried, Emmie threw it up after the last sip . . . it became such a struggle.  She'd sit there for almost 2 hours sometimes to drink 3.5 oz.  And it felt absolutely ridiculous trying to force her to drink juices that she hated--the kid's a water drinker!  Isn't that a good thing? Yes, but anyone will tell you that water does not mask Exjade as well as juice does.  So, even though she's a huge water drinker, when we tried the Exjade in it, she was grossed out by that turbid-looking water and gritty feeling at the end.

Moving On
So we had to move on.  Exjade only works if you take it, and liquid wasn't getting the job done.  Under the guidance of our nurse and hematologist, we started putting Exjade in food.  We had a few non-starters.  I thought rice pudding would be good because it seemed like the consistency would hide any little crushed bits, but Emmie wasn't a fan.  Chocolate pudding seemed like a great idea, but the crushed Exjade changed the color from chocolatey-brown to greyish, and that seemed to bug Emmie.  And then we found the Yoplait Dora strawberry yogurt.  Oh, my goodness, it's Dora.  EVERYTHING Dora is a hit, as was the yogurt!  Like Dora says, "We did it!  We did it!  We really, really did it!"  And we haven't looked back.

Dust Off Your Mortar and Pestle
How do we do it?  I crush the Exjade tablet(s) in a little pill crusher thingie that you can get at Walmart, Target, Walgreens, etc..  I've heard of people putting in a plastic bag and smashing it.  I think a mortar and pestle would be great, but I jettisoned mine a long time ago after it became impossible to get the garlicky-pesto smell out of it.  I put the crushed Exjade in a little bowl, add a TINY amount of yogurt and stir.  I probably use 2-3 Tbsp.  You don't want to stir it into too much food, because then when your picky toddler decides she doesn't want to eat, you have to force a whole huge bowl of something to get the Exjade down.  I drop in 3 sprinkles for fun and it's good to go.  Now, if the girls eat it right away, you can still see flecks of Exjade in the yogurt.  If you let it sit a bit, they sort of "melt" in and you can stir it until it's a totally homogenous-looking mixture.  You could theoretically dissolve the Exjade in a tiny bit of water first, make a paste, and then stir it in, but depending on the food, it could make it a little watery.  Since Exjade is technically supposed to be taken in liquid, for good measure I make sure they drink water while they eat their 3 scoops of yogurt.

Exjade, pill crusher, Dora yogurt, sprinkles.

Pretty happy now taking Exjade.

Fooling around taking Exjade.  Not suggested.
Taking Exjade in food is not foolproof.  I think there are lots of issues with it, definitely more issues than taking Exjade in liquid.  But, as I stated earlier, Exjade only works if you take it, and I'd rather the girls take it imperfectly than not at all.

  • It is certainly easier to drop the tablet in liquid, swirl it around, and be done with it.  None of the crushing, carefully pouring it into another vessel, stirring, etc.  I'm always worried I'm going to sneeze and the powder will fly everywhere.  Mixing it in water first solves some of this, but it can make the food more watery and if your kids are anything like mine, they notice the tiniest little things like that.  (ie, "This Dora yogurt isn't right!!!!")
  • When you have a busy day and somewhere to go, it would be much easier to throw the Exjade in a closed cup and take it in the car.  Not an option with food.
  • Kids are usually messier eaters than drinkers.  If the drink is in a closed cup with a straw, it's hard to spill the medicine or get it all over your fingers.  Not so hard with the food.  
  • Until kids can be less messy, it would be best to feed the Exjade to them to avoid spilling it, but if your kids are like mine, they want to do everything themselves, and that leads to them dropping some of the Exjade-laden yogurt on the bib or tray and me trying desperately to scrape it up.
  • If a kid drinks the Exjade through a straw, it's unlikely to end up all over their mouth and face.  As you can see in the pics, the girls get yogurt on their mouths and I have to try to get them to lick it all in.
  • When you get to the end of Exjade in liquid, you re-suspend the residue in one last sip and drink it down.  But think about it when you get to the bottom of your bowl of yogurt.  Well, you have to get up every last drop of the yogurt and can't really re-suspend it in more yogurt.  So I have to use a scraper (small rubber spatula or my finger) to get the bowl clean because it's hard to get it all up with a spoon.  I think this "residue" issue is one of the trickier ones with Exjade in food.
Other Foods
Once my gals are on to something, they are ON to it and don't want to change.  So, I wouldn't dare whip up their Exjade in anything but Dora yogurt right now, no matter how much they love the food.  I just feel like this is working and I don't want to mess it up.  Once I was out of yogurt and I stirred it into all natural peanut butter and spread it on a cracker and Rosie took it that way.  Other foods you can try include applesauce, pudding, ice cream, baby food, creamy cereal, and hummus.  Even sprinkling it on non-creamy foods is OK  (think rice or eggs-cooled off a little and don't heat the Exjade or put it in a frying pan or anything crazy like that).  I heard of one kid who sprinkled it on pasta like grated cheese.  You just have to remember that it has to be a small amount, and it has to be all eaten, including any residue on the plate.

I would suggest trying the food ALONE first and make sure your kid really, really loves it before stirring your daily dose of Exjade into it.  Actually, the same advice holds true for liquid.  Basically just don't throw the Exjade into something new without testing it out first so you don't waste the drug.  For E, I think knowing her Exjade will be in the same food, same amount, same bowl, same spoon, same three sprinkles every day is comforting to her.  For other kids, they might get sick of a certain food after awhile so you'll need to rotate in something else.

So, Is it Working?
That remains to be seen.  E had her baseline Ferriscan in early February, and due to some of delays she didn't start the drug until March.  I don't follow the ferritin too too closely, because as we all know, it's not a great measure of total body iron.  And, no one ever promised that Exjade would show results in six months.  So, I'm putting my faith in the research that has been done about using Exjade in food, and the anecdotal evidence showing amazing success in several patients I know.  The real test will be at Emmie's next Ferriscan.  And, if it's not working, I won't blame it on the method we are using to take Exjade, I'll just blame it on the Exjade itself and deduce that Emmie is one of the 30% of patients who do not respond to the drug.

Taking Exjade in food is not on the label of the drug.  The pharmacy will tell you that you're doing it all wrong, because they have to speak to what's on the label.  Talk to your doctor before you make any changes to how you take Exjade.  You still need to do all of the same lab monitoring as you would if you were taking Exjade in liquid.  I'm not a doctor, I'm just a mom trying to get two toddlers to take a very important medicine.

Wednesday, August 21, 2013

A Magic Wand

Cinderella and all things Princess have taken over this house big time.  Emmie sings the songs, acts out scenes, and is constantly saying, "I'm doing what Cinderella does."  One day when I was on my hands and knees scrubbing the floor, Emmie said, "Mama, you look like Cinderella!"  (NOTE:  She never says I look like the beautiful, glowing, ballgown-wearing Cinderella.  Only the shabbily-dressed maid Cinderella.)

The other day Emmie was prancing around the house saying "Bibby-Bobby-Boo" [sic] and waving an unsharpened pencil like her magic wand.  The whole pencil thing seemed so lame that I decided it was time to go out and buy her a "real" magic wand.  Being the frugal mother I am, I figured we'd try the Dollar Tree first.  I mean, you can buy a magic wand for 25 bucks at some of the boutiquey toy stores, but for that kind of money, it had better erase my wrinkles and clean my floors so I don't have to look like shabby-maid Cinderella anymore.  Given that we'd likely lose or break the wand in a week or so, the Dollar Tree it was.

When I told Emmie we were going out to buy a magic wand, she started jumping and screaming with joy.  Of course, Rosie did, too, although she had no idea what the excitement was all about.  We piled in the car on our magical adventure and as luck would have it, the Dollar Tree had a brand new display with lots of magic wands and even fairy wings!  Emmie was out of her mind with excitement.  Rosie was excited, too, although she was equally as excited by a pack of 10 pastel-colored plastic shot glasses that we saw.

So, $4.25 later we were piling back in the car with two magic wands and two pairs of fairy wings.  That's when Emmie said, "Thank you, Mama.  No one ever got me a magic wand in China."  And I cried.  I mean, I just bawled.  Thank goodness I wear huge sunglasses.  I was reduced to a puddle, standing in the parking lot of the Dollar Tree, covered in glitter shedding from the fairy wings.

Now, don't get me wrong, this is the same child who has told me that her foster mother took her to the beach EVERY day, and that the only thing she ever ate with her foster family was cake.  But, it just made me think that even though Emmie had no idea what she was saying, that it was probably true.  Or, maybe it wasn't, who knows...I'll never know exactly what she had or didn't have.  But I do know that her clothes had holes in them and her shoes never fit, so she probably didn't have lots of magic wands.  Still, I do believe she had a lot of love from her foster family, which is really all that matters.  With Rosie, well, that's a big question, too.

It sort of got my head spinning thinking of all of the questions that are yet to come.  Emmie has already asked me why she had a foster family and Rosie didn't, and why Rosie lived in the "bad orphanage" - Emmie's words, not mine.  Our visit to Foshan Shunde clearly left an impression on her.  Understandably so.  It left one on all of us.

The questions are little now, but they are going to get bigger and harder.  All we can do is love our girls, tell them their stories, and keep open and honest hearts.  And, in the meantime, I'm kicking myself for not buying that fancy $25 magic wand.  Or, maybe buying 25 of the $1 magic wands.  To try and make up for whatever they missed.

A $1 magic wand and 25 times more kisses is just as good as a $25 magic wand.

This post is dedicated to a dear friend of mine who passed away way, way, way too soon.  A beautiful, funny, kind, warm woman, who I didn't see nearly enough, but she followed everything about the girls.  She loved Disney, and I'm sure she'd love to see the girls with their magic wands and hear that Emmie loves Cinderella.  My heart goes out to her wonderful family.  Rest in peace, Claudia.  You will be terribly missed.  xoxo

Wednesday, August 7, 2013

Three Months of Rosie

Today is three months since R walked into the Civil Affairs office in Guangzhou, and into our lives forever.  She was very sick, her clothes were 3 sizes too big and her bangs were crooked.  During our time in China and once we arrived home, she decided she didn't like Mama very much, literally pushing me away at times.  She didn't know the concept of having boo-boos kissed and barely made a peep if she hurt herself.  She averted her eyes when you looked into them.  She'd even go as far as to cover her eyes up and shake her head "No" when you tried to make eye contact.  She seemed "happy-ish", I'd say.  Laughing, playing, smiling, but in a somewhat superficial way.

Flash forward to today.  Sure, some of the clothes we bought her are still too big--she's TINY, barely 20 lbs--but most of them fit.  She's healthy and I've figured out how to cut those darling little bangs pretty straight.  You'd never know that when we first met she tried to shut her new Mama out.  She kisses me and hugs me and wants me to hold her "UP" and never wants to be put down.  At the beach, she loves to just lie on me in the warm sun when I rub her back and smell her salty hair.  Now, EVERY boo-boo must be kissed, and she kisses the boo-boos of others.  She loves looking right into my eyes.  She takes my face in her tiny hands, presses her nose to mine, and looks right at me.  When we say, "I love you", she says it back.

R's language is coming pretty quickly.  She loves to sing, dance, and scribble.  The first time we took her to the beach she was terrified of the sand and water.  Today she was rolling around in both, having the time of her life.  She's a pretty good little eater, loves her bath time, and likes being tickled.  She runs to the door and yells, "Baba!!" and throws her arms up when P comes home.  R's relationship with her big sister is blossoming, too.  They play together, fight together, help each other, hold hands, and cause trouble together.

Three months is a short, short time in a newly adopted child's life.  There's still so much figuring out to do for all of us.  Still, we've moved forward leaps and bounds, and I credit Rosie's resilience, cheery outlook, and open heart for how far we've come.