Wednesday, April 27, 2011

Denied (Again)

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:

  1. 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.
  2. 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.
  3. 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).
  4. 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.
Our insurance company denied the claim, and he is not on his Nexium at the present time. This means that his pharynx is currently being assaulted by acid reflux, greatly increasing the likelihood of a recurrence of his laryngomalacia and obstructive apnea.

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:

  1. Tried an H2 blocker with his Nexium.
  2. Tried Nexium once daily.
  3. Tried Prilosec (omeprazole, 20mg) twice daily.
Numbers 1 and 2 are clearly wrong. Nolan cannot take Prilosec because it comes in a pill form. He is three years old. Also, Nexium is very slightly stronger than Prilosec, and even the Nexium can't control his reflux without an additional H2 blocker.

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.


TheSweetOne said...

Not that you need more to consider but one of the moms in our NS forum mentioned that sometimes, with sleep apnea, reflux gets worse because a vacuum is formed sucking more acid up the esophagus. Not sure the truth to this...

leah said...

It is true. Nolan's GERD caused his laryngomalacia, and the laryngomalacia made the GERD even worse. We were hoping the supraglottoplasty would help calm down the reflux, but it had no effect. He still has severe GERD and LPR (extra-esophageal) reflux - His severe reflux pre-dated the obstructive apnea and laryngomalacia. He has slow esophageal motility and some mild delayed gastric emptying, which also contributes to the problem.

It is a vicious cycle, which often leads to a fundoplication (something we are REALLY trying to avoid)!

spherescamp said...

I will keep you an Nolan in my thoughts that your insurance gets its collective head out of the sand sooner rather than later and approves his medication.

I'm waiting to see if my insurance company will follow through with the hearing aid coverage that's listed on my policy. I've lost another ~15-20dB and the aids I have just aren't cutting it anymore. In the meantime, I feel like everyone's talking to me from underwater.

It's nowhere near as serious as Nolan's GERD, but I know what you mean about the ridiculousness of insurance.

Julia said...

Grrrrrrrrrrrr. Sounds like the doctor needs to get on the phone ASAP, as in yesterday, and get this the heck straightened out. When our insurance initially denied Ben's CI, we launched an expedited appeal, our surgeon faxed in a letter of medical necessity with supporting documentation, etc., and we got the decision overturned in less than a week. Fun times, fun times.

leah said...

We've gone through this song and dance before. Hopefully it will get approved. If it doesn't, we have to go through the formality of trying the Prilosec, proving it doesn't work (via pH probe), then fixing the damage caused by trying a drug that won't work for Nolan (i.e. we get to go back to the PICU and do another supraglottoplasty). I'm not a fan of going through this, since it will add another pH probe to Nolan's schedule, more sleep studies, and possibly another surgery. He just isn't a typical infant with GERD - he has long-lasting GERD that has caused severe damage to his larynx and leads to failure-to-thrive without proper treatment.

Herding Grasshoppers said...

Oh Leah, this is SO WRONG! Will your doctor go to bat for you with the insurance company?

leah said...

They are already fighting the insurance company. We're sort of on the sidelines waiting to see what the outcome of the battle will be!

rouchi said...

I know acid reflux can be and I really hope this little boy could just get the best hel possible.keeping fingers crossed and sending positives wishes from here for all good for him.