I have sat for a long time thinking about sharing this with the world. Mostly, because I have to expose more of Lyra’s medical information than I am normally comfortable with. Also, because I doubt it will do anything to help her. However, I am at the end of my rope and Lyra is the one paying the price.

Anthem is denying a procedure that has the potential to dramatically improve the quality of Lyra’s life. For almost a year now, Lyra has been gradually spitting up more and more. It is to the point where she spits up over 30-60 times per day, most days. We have two GI specialists that we work with Children’s Hospital of Colorado. One of them is a motility specialist, and the other has worked with Lyra since she was 3 months old and handles her nutrition. We have tried adjusting all 7 of Lyra’s GI medications, and we have changed Lyra’s diet. These changes have resulted in negligible improvements.

So, what is this procedure, and what is Anthem denying? Lyra needs to be put under anesthesia, have an endoscope put into her stomach, and botox injected into her pyloric muscle at the base of her stomach. It is quick and minimally invasive. Anthem doesn’t have a problem with the anesthesia. The insurance company has approved for her to go under two other times this coming summer, and we can tack on this procedure to one of those (a brain MRI, and getting her ear tubes replaced). Maybe it’s the endoscopy? She’s had many of those, and Anthem has never denied one in the past. That also isn’t what it is denying now. No, Anthem is denying the botox shot. The actual medicinal part of the procedure.

To be clear, Anthem isn’t denying the procedure saying that it is experimental. The use of botox in pediatric medicine isn’t as uncommon as one might assume. In fact, this would not be the first time that Lyra has gone under anesthesia to receive botox shots somewhere in her GI tract. She had another procedure, done twice, in a different area that dramatically helped part of her GI tract.

So, what does it mean for Lyra if we don’t do this procedure? How does it impact her in ways that she recognizes? Lyra now has to wear a bib, at almost 10 years old, most of the time. She absolutely hates wearing them, but it is easier to change a bib than it is to change a shirt. Her shirts and pants are constantly stained and often have a smell to them from the spitting up. It is not uncommon for her to be on her second or third outfit by the time I take her to school. Lastly, she can no longer eat many of her favorite foods. We have had to greatly restrict her diet and make it much more bland in order to keep her stomach as settled as possible. This has meant cutting out so many of the foods that she enjoys eating.

Remember, Lyra hasn’t been eating by mouth for very long. To be honest, if you take all of the joy out of food for her, there is a real possibility she will stop eating all together. Oh, and guess what else Anthem is denying? Anthem is also denying the only food that she tolerates through her feeding tube AND her feeding pump. You know, the thing that has kept her alive for the last 9 years. The thing that still runs for at least 8 hours every night and gives her 50% of her calories and most of her fluids.

I’m not sure what I hope to accomplish by this rant. But I am just at a loss. Her doctors and the hospital have been filing appeal after appeal. I have made phone calls to try and get as much information as I can, and I am just not getting anywhere. Outside of the “inconveniences” the spitting causes, there are actual medical consequences that we have had to deal with as a result of this spitting up. I am just trying to get Lyra the care she needs. We all are. Except Anthem.

Anthem, it’s one shot. One.