Nolan's ENT increased his Nexium dosage a month ago, because his weight has been increasing and he requires a higher dose to maintain effective suppression of his severe GERD. Nolan was on 10mg (twice daily) Nexium, which was originally approved through December 2011. Of course, the increase in dosage gave the insurance company yet another opportunity to deny drug coverage - we got the letter in the mail today denying Nolan's medication.
This means, of course, that Nolan is currently not on ANY proton pump inhibitor (PPI) medication. For a child with reflux so severe that it causes failure to thrive and his airway to collapse, this is probably not a good idea. Of course, the insurance company must know more about Nolan's condition than his various specialists (that sentence needs a sarcasm font).
As a recap:
- Nolan was diagnosed with off-the-chart severe acid reflux. He was failure to thrive, had dysphagia, and was prescribed Nexium at a 10mg, once per day dosage.
- Some improvement was noted, but Nolan began having trouble eating again. Obstructive apnea and central apnea was noted during a sleep study. The Nexium was increased to 10mg, twice daily.
- Nolan developed laryngomalacia and severe obstructive sleep apnea. A follow-up pharyngeal pH probe demonstrated his 10mg Nexium was insufficient to control the reflux. 30mg of Zantac (2x per day) was added to his medication regiment. A follow-up pH probe demonstrated that his reflux was barely controlled (he still had at least one break-through reflux episode on the Nexium and Zantac).
- A supraglottoplasty was performed to correct the severe laryngomalacia (caused by GERD). At Nolan's follow-up appointment to the surgery, his ENT increased his Nexium dosage to 20mg (twice daily) to completely suppress the acid reflux.
The Zantac is not sufficient to control his reflux (it is an H2 blocker, a "lesser" drug than the PPI's). The insurance company states that we have not:
- Tried an H2 blocker with his Nexium.
- Tried Nexium once daily.
- Tried Prilosec (omeprazole, 20mg) twice daily.
And so, my little boy will continue to suffer from severe reflux, and cannot get the medication prescribed to him by his physician, because an insurance company determined it is too expensive.
The odd thing is, the insurance company is going to end up paying more when Nolan ends up in the PICU again with a revision supraglottoplasty.
Nolan has a sleep study on May 3, and is not on his medication. I don't expect the results to be pretty.