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.

1 comment:

Kelleyn Rothaermel said...

WOW! I say whatever works! As the children get older, can they just swallow this pill? I have a friend whose son has CF and he has to take his medication through apple sauce because he hasn't learned to swallow the pills. This was very interesting to read even if I do not have a child with thalasemmia.