Wednesday, September 2, 2009

On Nexium and Symptoms of Silent Reflux

Nolan, tugging at his neck. Nexium: Day 2

We are in "round one" of our battle to get Nolan's insurance company to approve his Nexium medication. I dropped off the prescription yesterday, and the pharmacist does not have any in stock. He said he won't order it until he gets approval from the insurance company, which is likely to deny the medication.

Our GI doctor feels that due to the severity of Nolan's reflux, Nexium is the best medication for him. Our insurance company feels a cheaper drug is the best for Nolan. Because a stuffed shirt in an insurance building knows more about my son's health than his doctor. But I digress...

The Nexium is a powder, which is mixed into a tablespoon of water. Nolan can't eat before it is given, and can't eat or drink anything for 30 minutes after taking the medication. Oh, and it tastes TERRIBLE. Since I can't mix it into applesauce or give him a drink to wash the taste out of his mouth, giving him the medication is quite the experience. And by experience, I mean "sit on your child and force 20mL of nastiness into his sputtering self while he spits as much of it back onto your face as he can." I'm guessing he's only getting about half the required dose, since he blocks the medication with his tongue and spits much of it out again. Mommies who have to dose your kid with disgusting medication that can't be masked, what do you do? I know there has to be at least someone with good advice out there!

I also thought I'd post about the symptoms of silent reflux. Now that we know what Nolan has, a lot of the strange things he does make sense. So, a rundown of his symptoms:

  • Occasional random coughing and watering eyes. This is due to acid coming all the way up and getting into his lungs.
  • Tugging at his neck. He does this quite a lot. This is because it hurts.
  • Refusing food. Again, because it hurts.
  • Craving liquid. This is because his throat hurts AND he's hungry.
  • Night waking. He refluxes, he wakes up. We thought it was just a random toddler thing.
Non-silent reflux (would that be LOUD reflux?) shows up by vomiting more than twice per week. Nolan, as a rule, hasn't been big on the vomiting. He did it every day for a week in April, and again a week ago. Other than that, no puke. He does spit up every once in a while (about 2x per month), but not enough to scream "reflux kid!"

I'm off to call the pharmacy to see what phone calls I need to make today. If I'm lucky, we'll get approval before my sample packets run out.


Anonymous said...

Wow. So glad you got to the bottom of this! E also is a silent but severe type, so I recognized all those symptoms quickly. These poor little fellows!

We have had success asking the pharmacist add a stevia sweetener to nasty medicines. E likes the tropical punch flavor and will take anything that way. We use a syringe and he laps it right up. I don't know if all pharmacies can do this, we are using a compounding pharmacy. I've heard of compounding pharmacies making transdermal creams for kids that refuse their meds any other way as well, but not sure what types of meds that works with. Good luck!!

xraevision said...

It certainly would be a challenge to start nasty tasting meds at the age of two. X has been taking his bitter reflux meds since he was two months old. The meds both come in liquid form, having been mixed at the pharmacy with a sweetening ingredient for the very purpose of convincing him to swallow it. We tried every method (and trick) of getting the meds down his throat, and the older he got, the more clever he got! We settled on using a dropper and placing it at the back of his cheek, squeezing a little at a time so that he was forced to swallow but would not gag. Now he is so accustomed to the taste and the routine that he sucks the meds from the droppers willingly, though sometimes after a fun game of chase.

After X was medicated (with industrial strength doses according to our pediatrician), the screaming and vomiting dramatically decreased, rendering the reflux symptoms mostly silent. No neck tugging, but often thirsty and nightly waking because he WAS typical in that lying down caused more reflux. He still wakes up about once a week quite congested from a minor bout of reflux, but after 20 minutes of being upright combined with sucking on his bottle, he is breathing clearly again. Gravity is a good friend to us!

I understand the heartbreak of watching your child suffer with the pain of chronic severe reflux. Poor little guy! I hope this medication kicks in and he starts feeling better.

tammy said...

oh and onto another battle for you! I was assuming the Nexium was tasteless and you mixed it with his milk! UGH. I wish I had some good advice for you. K was a horrible med taker and we had to do the whole "pin her body on the floor while she screamed and spit it back out at us" act. We always joked how we were waiting for her head to spin in circles and her to puke all over us. lol

I like the sweetner idea ... I wonder if they can do this with the powder too. Good luck Leah! Even with this, it's so nice to hear your little guy is on the road to feeling better!

Herding Grasshoppers said...

I definitely don't have the experience you guys do, but in general, the colder something is the less you taste it... maybe VERY cold water would help?

Just guessin',