Pages

Monday, November 3, 2008

Caitlin's ENT appointment

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!!

12 comments:

Unknown said...

Wow, this is like a re-play of Seamus' experience...only had one mild ear infection up to the age of 18 months, then we finally got an appointment with the most coveted ENT around, who immediately diagnosed him as having ears full of fluid. Seamus failed his hearing test. I felt like a terrible parents, being so concerned about his speech when the poor kid couldn't even HEAR. No doctor up to that point had said anything about fluid, and he was being followed by Dr. Scott at DuPont! If you are truly unhappy with your geneticist, it's certainly worth checking out what your new insurance has to offer. Or since you now have a wonderful ENT, you can let the genticist stick to measurements and let Dr. Gross be the one to order a baseline MRI and all other necessary tests - from the neck up, of course :-)

Greene Family said...

I'm so glad to hear that your appt with Dr. Gross went so well! Simon never had an ear infection until the week before his surgery for tubes in Sept, but we knew through tests with the audiologist since he was a newborn that he was not hearing within the normal range. Then his ENT confirmed that his ear drums were not moving. Anyway, he had his post-op appt from the surgery last Friday, and he is now hearing within the normal range and his ears and tubes look good. He is making more sounds now, but not quite forming new words yet, which may partially be because he is just so busy getting into everything and being on the go. His therapist said that some kids do not talk much until 18 months old because they are just too busy exploring.
That is great to have the surgeries done together, if Caitlin does have to have her tonsils and/or adenoids removed. For Simon's surgery, he had his operation by the urologist, his tubes by the ENT, sedated hearing test by audiologist, and blood work by geneticist all done at once. It is definitely a bit of relief to only have to have the anesthesia the one time vs. 2 or 3.
As far as the geneticist, I would recommend going to Cedars Sinai, especially if you can no longer trust the current doc. Simon's geneticist feels strongly about baselines and every 6 month follow-ups with certain docs, such as ortho.
Happy Voting!

The Johnson Family 5 said...

Ok, so I can't even compete with the above posts, but I have heard very good things about a neurosurgeon at Cedars who I may eventually get a 2nd opinion from. I'm so sorry that you are having Dr. trouble. I would do what you are doing and look for a new geneticist. Someone who is helpful. Best of luck with the upcoming appts!

Caden and Mommy said...

Mike!
One thing I have learned in the last 19 months, as I'm sure you have is our medical and health insurance field is messed up!!! I'm so glad you guys liked the ENT you saw. I'm hoping that Caitlin's sleep study goes well and there is no OSA or CSA!!!
Trisha

Alex said...

I am so glad you guys finally got some answers! The ENT doctor sounds great! When we took Anaïs to the ENT, he also let us look through that scope...pretty cool (although Anaïs didn't seem to find it cool LOL).
It's so great that she will get a sleep study, that should give you guys some information!

Melissa Swartley said...

Yikes! What a load of stuff you've been dealing with! I'm so glad that you are getting some answers now! The ENT doctor sounds good! Hopefully your next appointments will go smooth and way to go Caitlin for being such a champ with the scope! Uggg... sleep study. Sonya was not too thrilled about all the wires attatched to her head, face, legs, arms and chest but it was well worth it to get the answers we needed. Best of luck in the upcoming weeks. I hope you get some good help at Cedars!

Destini said...

Ok, Trace had a sleep study on Oct 1, and it went really well - until he woke up in the middle of the night and realized they had stuck a cannula up his nose - then proceeded to get tangled up in the wires during his fit - so here is my secret - I bought Trace a new DVD (Bob the Builder, one of his favorites) and a brand new toy (the GeoTrax Old West railroad) and didn't show them to him until the sleep study. As they were wiring him up, we watched the DVD and he held the train, and he did really well! After he got all wired, he even laid on the bed and played and watched his movie for like 2 hours with no complaints. Good luck, and it sounds like you got a good doctor!

mejane said...

Why can't you get a 2nd opinion? From my experience, Kaiser is great... as long as you're healthy. Not to say Caitlin isn't healthy, but she does require more medical attention than the average child. I like what Fred said(I think it was him) recently on POLP..."it's our job as parents to be the biggest pain in the doctor's butts." Do what you have to Mike and good luck. Yay for Dr. Gross!!

Unknown said...

Very happy to see your ENT appt went well and that you feel comfortable with the doctor. Aidan is 3 1/2 and has had 2 CT scans as well as 2 MRI's since birth. He has also had 2 sleep studies done. I was very proactive with demanding certain things be done and luckily in the past with Sutter and presently now with Kaiser all my doctors have been more than supportive and knowledgeable. So far so good with Aidan..they are keeping an eye on his tonsils and may need to have them removed in the future.
Please keep us informed as I am sure you will on Caitlins progress.
Melisa

Kim said...

Well my experience was the opposite. The ear infections started around age 1 and became chronic. To the point Preston lived on antibiotics and became immune. I switched ENTs to a more aggressive doctor who stated the reason he was not really talking was because he couldn't friggin hear! I had his hearing tested and he was so filled with fluid everything sounded underwater. Sooooo a week or two later in went the tubes which miraculously have not fallen out yet. He now never shuts up and his hearing is very much like mommy's (I have been known to listen in on other conversations at restaurants...hee hee).
I know that Caitlin will completely benefit. I am so glad you found a wonderful doctor. Won't be long before she will be a talking machine!

Anonymous said...

When Parker failed his hearing test, I was surprised since he had only had 2 ear infections. The tubes have been great, and he is saying new sounds all the time!

Tonya said...

Find a new geneticst. They should be the one's who are familiar with skeletal dysplasia's.

Knoah had tubes placed in Sept 07, which haven't fallen out yet. He has has 1 noticable infection. The sleep study is a must! Only then can they find out how severe her apnea is, which she no doubt does have. The issue with the T&A is not them itself, it's her space, like you said.

The MRI is for fluid in the head and her foramen magnum. That's all. You need to know what that looks like. You don't want to get to far down the road to find out she is having neurological symptoms that could have been avoided. Baselines are IMPORTANT!!

Hope things go well with your search and I if I can help, shot me an email!