adventures in GERD – part 2

Bumby has been on his Prevacid for about 6-7 weeks now. After 10 days on it, he was sleeping 7 hours in a row, waking up happy, and finally comfortable. But then, like always, it stopped working. Maybe it was the teething, maybe it was the wonder weeks, maybe it was the cold. I waited it out. It got a little better, and he slept 3 hours in a row. It got worse again, and he was up every hour or 2. Some nights, he won’t go down at all, and my wife or I has to sit up all night holding him against our chest. 

I call the doctor, and can’t get through. I call another doctor that was recommended – maybe we need a second opinion? I get transferred to urology by accident, then disconnected. The baby wakes from his nap, and I give up. 

Meanwhile, his bottle of Prevacid is getting close to being empty. I go to the pharmacy and they tell me I need a prior authorization or I have to pay out of pocket (again). I did this last month too, because there was some kind of glitch and I wanted to get him started on it right away. After millions of phone calls — insurance, provider, pharmacy, repeat — I go pick it up and pay out of pocket again. $125 a month, for something that barely seems to be helping him. 

“Don’t forget to keep it in the fridge!” the 12 year old pharm tech reminds me as she hands me the bag. 

I can actually feel the color drain from my face. “They didn’t tell me that last time. It wasn’t in the paper I got. He’s been on this for SIX WEEKS.” 

“Oh, it won’t hurt him,” she said. “It just loses stability, so it’s not as effective.”

Of course I go immediately home and google it, to discover that it’s not just “less effective.” It’s basically useless. I have been giving Bumby a syringe full of artificially strawberry flavored sugar water twice a day for the last six weeks. Some of the research suggests that even if you keep it refrigerated, the Prevacid starts to lose stability after 2-3 weeks if it’s compounded (i.e., made into a liquid for babies). So that’s awesome. 

He has been okay during the day, with all his sitting and standing and generally being upright. But lie him down, and the kid is absolutely miserable. I go to him in the night, and his face is all scrunched up and he is screaming so loud and so long that he’s hoarse. He doesn’t really even cry — he just screams.  The front of his shirt is soaked in throw up, drool and tears. I wipe the vomit off his pacifier, dry his face on my sleeve, and scoop him up. I rock and sing, sing and rock, and usually he is exhausted enough that he will go back to sleep through the pain.  For an hour, then he’s up again. 

Back to the doctor, again. Fight to convince them that he’s really suffering, and NO, I’m not just lazy/spoiling him because I won’t leave him crying in his crib, YES, he has reflux even though he’s fat, PLEASE someone help me so that I can help my poor little baby. 

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4 thoughts on “adventures in GERD – part 2

  1. Our son takes Zyrtec twice a day. He currently takes 1.5 ml and the doctor said as he gets bigger he will either need to increase the dose or he will just grow out of it. He seemed to think that when he starts eating food that he will improve.

      • We have increased his dose once since he started taking it about 4 months ago. We are thinking he may need to go up again but he has his 6 month check up next week so will check then. When we first noticed he needed it he would arch his back and jerk away from the bottle and just scream. He would be in pain for at least 15 minutes after each feeding. He also spit up a lot. Now it seems to just be the spit up. Sometimes it can be as much as an hour after a feeding.

      • Yeah, I would say that is the biggest difference I have noticed with reflux spit up versus normal spit up. Obviously the GERD spit up also hurts, but that is not always clear. What seems to surprise people is that Bumby will spit up all the time, not only just after eating. Sometimes he will spit up at 11 and it’s the prunes he ate at 8. I hope the increase in dose does it for you!

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