Nolan has been off of his Nexium for about four or five days. After two days on the phone and an hour spent at Rite-Aid, I managed to get his former prescription restored. He was originally approved for 10mg, twice daily Nexium through the end of December, and the new prescription shouldn't have voided that approval.
He is still denied the dosage he needs (20mg, twice daily), but the 10mg dosage is better than nothing. I gave him a dose of medication this morning, so he'll be back on the Nexium for four full days prior to the sleep study.
I have heard some stridor at night, and he still wakes frequently (even prior to the insurance company denial of the Nexium), so I am anxious about this sleep study. If he fails it, then he'll be scoped to determine if the laryngomalacia has returned. If it has returned, the next step is a revision supraglottoplasty. Revision supraglottoplasties usually come with a fundoplication to curtail the reflux - obviously not a path we want to go down. I'd really rather the Nexium and Zantac do their job to control the crazy level of reflux than go through (more) major surgery.
5 comments:
Can you go ahead and give him the 20 mg dose and then when you run out, a mysterious accident will cause you to need an early refill? Perhaps your dog ate your Nexium? ;)
We actually did that earlier (when his ENT first increased his dosage). The insurance company refused to refill the prescription early, hence the week of no medication for the little guy.
That is just CRAZY MAKING! Hope your doctor is as tenacious as you are!
Julie
PS Could he/she give you a bunch of "samples" to tide you over?
I'm still waiting for the ENT's office to call me back. We have the 10mg meds, so I suppose we'll soldier on through the sleep study and see what it yields. Any obstructive apnea is indicative of past damage, so getting the higher dose now won't really help the sleep study results. I honestly wish we had a comprehensive diagnosis for Nolan. Sometimes having a syndrome name makes the course of action/need for medications clearer.
The ophthalmologist really wants us to see a geneticist again, so we're trying to figure out where we want to go. Cleveland, Cincinatti, or Pittsburgh are the top runners for a consult at this point.
Come to Cincinnati :)
Post a Comment