So I have been seriously laggard in getting this post up - primarily because (as those of you who know me already know) I'm way too obsessed with politics, particularly with certain issues this election season, and have been intentionally overwhelming myself with discussions about them, occasionally to my detriment (and to that of certain loved ones - sorry, RJ). Not to mention the fact that I got violently ill the night after we came home from the appointment, and was wiped out for two days with barely the energy to respond to status updates on Facebook. It would take a power outage that wiped out both our home power and that of cell phone towers to keep me from making those comments! LOL
So, anyway, on to the topic at hand. After our frustrating appointment with Caitlin's geneticist a few weeks ago, we finally managed to wrangle a referral to a Kaiser ENT specialist. If you missed the last post, this was a major point of contention, since the Health Guidelines for Kids with Achondroplasia call for both an MRI and a sleep study as soon as possible after birth, neither of which Dr. Tiller felt necessary to order. However, after several problems with friends of the family who'd seemed just fine before needing surgery, we decided it was important to press the issue. Dr. Tiller still refused to order an MRI, stating that he "doesn't believe in baselines", but finally consented to give us a referral to an ENT to discuss the sleep study. While both of us were extremely frustrated with the struggle just to get simple exam appointments, I really wanted to give Dr. Tiller the benefit of the doubt and assume that his reluctance to order testing was the result of working for an extremely cost-efficient HMO.
Our appointment was last Wednesday afternoon at the Kaiser offices on Sunset Ave in Los Angeles. We have been very fortunate with the level of assistance we've gotten from our Early Start program through the school district - our service coordinator attended the appointment with Dr. Tiller, and we were accompanied to this one by Brenda, Caitlin's speech therapist.
The good vibes began in the waiting room for Dr. Amy Gross, the ENT, where a friendly patient across the room struck up a conversation inspired by Caitlin's undeniable cuteness. He had much good to say about Dr. Gross - mostly telling Caitlin how lucky she was to have Dr. Gross as her doctor! It didn't take long for this to be confirmed by the doctor herself when we got back to the exam room - within minutes she'd established herself as friendly, knowlegable, and plenty willing to listen. She also agreed to the need for a sleep study quite quickly and with none of the drama that had been present at the appointment with Dr. Tiller - which was both a relief, since that's what we really wanted to get out of this appointment, and a letdown because it confirmed the fact that Dr. Tiller was just being stubborn and resistant of his own free will, and not at Kaiser's behest.
She also examined Caitlin's ears closely with her scope, and immediately diagnosed them as filled with fluid. We'd been concerned about this, even though she hasn't been diagnosed with many ear infections, because she still wasn't picking up much in the way of new words, and the ones she did have didn't have much in the way of consonant sounds. She likes to make lots of Ooh and Aah sounds, with some Wows and Oh's thrown in for good measure - dadda, mamma, and bubba are her only words with real consonant sounds, even though Brenda the ST had determined through eating exercises that she was fully capable of using her tongue to make the correct sounds. Dr. Gross ordered a set of tympanograms to verify her visual diagnosis, and asked us to come back after the tests so she could scope Caitlin's breathing passages.
Sure enough, the tymps confirmed the fluid with nice obvious flatlines where there should have been bell curves. When we returned to Dr. Gross with the evidence, she let us know that Caitlin was going to need surgery for tubes if she was to regain any of her hearing. This was disappointing, but not really a surprise. Caitlin's nearly complete lack of diagnosed ear infections had been a much bigger surprise, albeit a pleasant one, but Cherylle had long suspected that Kaiser had missed diagnosing one or two for the same reason that they hadn't caught this fluid in her ears just TWO DAYS EARLIER when we'd been in concerned about an ear infection.
Anyway, we finally took Caitlin back to another exam room where they strapped her down onto a papoose board so Dr. Gross could scope her tonsils and adenoids. As you might guess, this was not a particularly pleasant experience for us, since as soon as she realized what was going on Caitlin started acting like we were attempting to chew her arms off at the elbows with our back teeth. Finally we got her calmed down a bit and the doctor was able to thread the fiber optic scope down her nostril and get a look. She gave both of us a look as well, which was fascinating but not terribly useful since I had no idea really what I was looking at. Actually, I was really amused to see the light from the end of the scope as it glowed through her soft palate while she was screaming at me :-)
Anyway, the end result was that she didn't think that her tonsils and adenoids were dramatically bigger than usual, but that the space for them was really small (no surprise to us!). She decided to wait for the sleep study before making a final determination as to whether we needed to worry about removing either of them. After getting Caitlin unbound from the papoose board, Dr. Gross told us that while it was probably fairly traumatic for us, Caitlin actually handled the process better than most of the little ones she deals with!
Anyway, the final verdict was - sleep study, to be scheduled in the next 6 weeks to check for both central and obstructive sleep apnea, and surgery for tubes to be scheduled in about 10 weeks, which will allow a determination to be made about removing her tonsils and adenoids based on the results of the sleep study, so both surgeries could be performed at the same time, limiting the risk of anesthesia.
Whew - we were blown away by not only how painless this process was, but by how supportive and helpful Dr. Gross was. When I asked her how many LP patients she'd had previously, she said that she'd only had 5 so far, but with her willingness to listen to our concerns we had no problems with her abilities.
Now, our problem is what to do with our geneticist. We have completely lost any trust we had in him. If we had listened to him, and simply been happy with how Caitlin was doing, it might have been another six months to a year before we'd discovered her hearing loss, by which time she could be dramatically delayed in her language development. What else was she missing because of Dr. Tiller's complacency? Now we're actually more concerned about getting an MRI - not because we're any more concerned about her situation, but because we're even less trustful of Dr. Tiller's opinion.
So what do we do? Kaiser has the best coverage for major medical issues, or at least has done the best by us until now, but the geneticist is supposed to be the captain of the team, and Dr. Tiller doesn't seem to believe that we even belong in the clubhouse! Our next major step may be to investigate further what we can do with the Blue Cross coverage I just qualified for at CalArts - I've seen Cedar Sinai on their providers list, so I'm hoping that we may be able to get Caitlin seen down there. Whatever happens we're much happier with how things are progressing for now - we just have to deal with our long term plans!!