I really wasn't going to blog about this. But most of you know about this and so many people are asking for updates... this just seems like the easiest place for it.
For those of you unfamiliar with the situation, here's a quick catch-up version. Boo has had issues with her parotid gland for the last two years. It's bothered her off and on, but since late this summer it's turned into a persistent issue and is very uncomfortable for her. We have been seeing a local ENT and he referred us up to a pediatric ENT at OHSU. Before her visit she had a face/neck MRI, and we took her to OHSU on Friday.
It was a rough morning! In preparation for a fine needle aspiration of her gland they put numbing cream on her neck and it looked like a big pus packet! So things started out a little goofy and funny. But then the Pediatric ENT looked at her MRI and came to talk to us. She was very shocked at how much the gland had changed since her last MRI two years ago. This is clearly something that has been progressively getting worse over the last two years. Not something that was coming and going, like we had thought all along. She really wants to talk with one of the Adult ENT's at OHSU and see what they think of the MRI because it is a very unique situation.
Next a pathologist came in to do the fine needle aspiration and biopsy. It took two needle draws for them to get cystic matter and it was really horrible. It is not supposed to hurt when they draw out fluid but it did, which really surprised them. They said that is actually a telling symptom and helps them with the diagnosis. Boo got to look at the cells in the microscope so at least that was cool. And for the rest of the day she showed everyone the "vampire bite" on her neck.
Because of the results of the biopsy we know for sure it's NOT cancer. We didn't think it was, anyways. But it's always nice to be totally sure. The doctor also thinks it's completely developmental and not related to any disease. But she is consulting with a rheumatologist "just in case" it's some weird immuno-suppressed condition (like Sjoengren's or HIV).
Unless the blood tests show something else, the diagnosis is that she has extreme calcification of the gland due to malformed or "kinked" ducts. Saliva backs up in the gland and gets gummy, then hardens. The gland responds to the irritation of the calcified saliva and cysts form then turn into benign tumors. Depending on how things are flowing the cysts can come and go. They confirmed that there is absolutely no infection in the gland, either.
And they can't do anything about it. The only option is to remove the entire gland and they don't want to do that at her age. They think that by the time she is old enough for surgery that she will have outgrown it or the gland will have "burned out" and either shut down or be working at a lower capacity and won't cause the problem because it won't get backed up.
So we're pretty frustrated to be back pretty much at square one. I've heard there are other, "newer" ENT's in town so it might be worth a second opinion. But I'm also considering taking her to a naturopath or a witch doctor or something. It can't hurt, right?