Today we went back to visit with our ENT. The appointment was scheduled as a follow up to B's prick allergy test last week and discuss the CF test/Immunologist appointment.
When Dr. Blotter first came in and asked how we were doing I just looked at him and said, point blank, "Please. Do not EVER send anyone back to that immunologist. Ever again." He looked at me kind of surprised and said, "Really? That bad huh?" I proceeded to tell him that Dr. Firszt was the more arrogant, rude person I had met in a very long time. I told him about how he was so rude about the food allergy testing, etc. Dr. Blotter said he had only ever had to send a handful of people to immunology over the years and he hadn't ever gotten a bad report. He did however have a friend that's a nurse at LRH that took her daughter to Dr. Firszt on his referral and she didn't care much for him either. I told him if she was treated the way I was I don't blame her a bit! He told me he was glad to get that feedback and would keep that in mind in the future. Hopefully I saved someone a very aggravating experience.
Dr. Blotter checked both of B's ears. In her left ear she has one tube open but the other is blocked. Both tubes in her right ear are blocked. However, even with 3 of her 4 tubes being blocked her ear drums aren't bulging. Which happens to be a VERY big deal for little sister because her ear drums are ALWAYS bulging. I told Dr. Blotter that since we had taken her off of all dairy that she has shown huge improvements - the perpetual rattle in her chest is all but gone. After looked in her ears he agreed that she has made huge progress. Yay!
So, we have a couple options now.
Allegra, singular, continue strict no dairy diet, special drops under her tongue (explanation in a second)
Allegra, singular, continue strict no dairy diet, remove malfunctioning tubes, place new tubes in ears
Let me explain the drops. I asked Dr. Blotter if B was a candidate for allergy shots. I assumed that's what they would do since she had reactions to so many airborne. He told me that right now she's too young so she's not a candidate for shots. Apparently, in Europe, most people don't do allergy shots, rather they do this drop under their tongue. This drop is a special mixture that acts like allergy shots. Dr. Blotter said he believes that B will have a better response to it, it helps with some food allergies and it's safer for B than an allergy shot. Here's the kicker. The FDA hasn't approved the drops in America. This means that they aren't covered by insurance and cost roughly $1,200/yr. I'm assuming that he has other patients that do or have done them because he said that they have them made special at their lab.
And this folks, is why I LOVE my ENT and won't go anywhere else.
After thinking about our options, Dr. Blotter says to me, "You know what? I'm going to make you a deal. I will PERSONALLY pay for the drops for her if you will use them." I told him I'm willing to try about anything with this child of mine. He looked at me and said, "Ok. I'll get the drops ordered."
The other option we have on the table right now is a little scary of an option but still one to consider. This option is called a mastoidectomy. According to the website medline plus: A mastoidectomy is surgery to remove cells in the hollow, air-filled spaces in the skull behind the ear. These cells are called mastoid air cells. The way Dr. Blotter explained this to me is that they cut an opening behind the ear and go in and cut out a section of bone in or near the middle ear. This surgery is a 2 1/2 hr surgery. It is an outpatient surgery and they do have to put a compression wrap on after surgery for 24 hrs. This option, however, is a much more permanent solution than yet another set of tubes. I asked Dr. Blotter what would push us from yet another set of tubes to a mastoidectomy. He said that if B has chronic ear infections or blocked tubes this winter that that is the route he would suggest rather than put another set of tubes in.
Dr. Blotter did say that doing a mastoidectomy on a child is rare. Doing a double mastoidectomy on a child is even more rare. Apparently they do these an adults with chronic ear problems rather regularly, they just generally don't have kids like mine come across too often because tubes generally work for kids!
So, right now we are doing option #1. We will begin a daily dose of allegra and singular, We will continue to stick to a very STRICT no dairy diet and we will begin the special drops as soon as they are ready. We did get word back from PCH that the CF test was negative (as we figured it would be) so that's great news. We are still waiting on test results from Dr. Firszt's office so we are still playing a waiting game. We did schedule a follow up for 6 weeks from now to check and see how things are going so hopefully we will get more good news at that visit!