Friday, November 29, 2013

Exjade finally arrived!!!

Okay, confession: I procrastinated getting Chengbin's exjade prescription filled! I didn't want to start it until all his lab work was in with solid baselines so we'd know where we were starting from. Exjade is serious medicine!! The possible side effects are not to be taken lightly and a host of lab work has to be completely monthly to monitor liver & kidney function when taking it..

I had no idea how difficult it was going to be to get it though...

When you get a prescription for exjade you actually have to register with the manufacturer, Novartis, before you can be approved to receive the medication.  Then you have to send the prescription to a specialty pharmacy that is authorized to fill a prescription of this limited distribution drug.  Then you have to wait for Novartis to approve the pharmacy to distribute to you and wait for the pharmacy to get final insurance approval!  It took 3 weeks from start to the meds arriving on our doorstep!!! Good thing this med is only the difference between life & death... Oh wait...

So exjade arrived and while I had procrastinated its acquisition, I had fully researched the methods that are tried and true for getting a picky toddler to take his meds. :)

Chengbin loved orange juice in China, and since I knew it was great to take exjade in, I had banished OJ from our house so that he wouldn't be burnt out on it before the exjade arrived!

So you have to dissolve the exjade tablets completely and ensure that every bit of it gets ingested.

I'd been warned to mix it in as little an amount as I could so that we got it all down quickly.  After all, the larger the amount to drink, the more likely we are to fight about finishing the whole thing.  So yes, I used a shot glass.  (Don't judge me)

Chengbin did great with it! No complaints!! It took three full shots of OJ to get all the exjade residue into his tummy.  

Since the first day we've experimented.

Milk & OJ work for him.  We also piled up some Jake & the Neverland Pirates yogurt to mix it in! ;)

This medicine is unbelievably important.  His liver scan showed he has 43mg I iron per gram of tissue.  This is scary high!!! Every transfusion causes a huge amount of iron to go into his little body.  Over time it has built up in his body and filled his liver.  Our goal right now is to reduce the number of transfusions he receives and do intensive chelation therapy to remove the iron overload he currently has.  Successful chelation is the difference between a long and healthy life or an early death from organ failure for a thalassemia patient.  Thankfully he takes it like a champ and we are so grateful he does!!

I am so glad our sweet boy is home in a family that loves him and will fight for him to grow up happy and healthy!! We are so blessed to have excellent doctors, medications, & insurance.  :)

Can't wait to see improvement over the next year! We'll keep you updated on out progress!

Thanks for stopping by!
Fannie, Matt, Katie, & Chengbin

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