I was able to volunteer in Nolan's class today for his Thanksgiving feast - it was a lot of fun! Nolan was a Pilgrim, and the children sat down with all of their friends for some "friendship soup" (everyone brought a can of alphabet soup to cook together, with the extra cans donated to a food bank).
The little guy's ear drops have started causing agony again - he is one of those kids who has extreme pain with the application of the Ciprodex drops. I have no idea why - I thought we were going to be fine this round, but now that a lot of the fluid/infection has started to dry up, the drops are actually penetrating his tubes and reaching his middle ear space.. and causing pain. I hate to see him in that level of pain - you know it is bad when a child asks for a shot instead of a few ear drops! Unfortunately, we can never get the same doctor twice at our pediatric group, so no one has any idea about this problem. And convincing a new doc that your kid has intractable pain with the application of ear drops is impossible. The paradigm is: "patent tubes = ear drops." I have to talk to our ENT about it, because the little guy has too many infections each year to go through this every time.
Nolan is still without an ear, and unfortunately the infected ear is his "good ear." While both ears were the same on his audiogram last July, we know the right ear has been having some trouble lately - and the left ear is infected. He is coping fairly well, though he is getting none of the Ling sounds correct. He can discriminate (or figure out) whole words, though, so he's struggling along. We have been using sign language to communicate since he can't hear well with the one ear - our sign isn't very good, but at least we can ask him if he needs to go to the bathroom or clarify basic instructions that he can't hear. To top it all off, his right aid keeps getting impacted with "gunk," which causes it to quit working. His last ear infection lasted for 6 weeks, and that is a long time to go without adequate hearing. Hopefully this one will heal up faster.
Our little pilgrim's sinus CT report came back, and the nurse practitioner at our ENT's office called with the results. They show sinus disease (chronic sinus infections, likely from the reflux), so we will discuss that at our appointment on December 5. I am very glad they gave us a heads-up, because I hate getting bombarded with new information and having to make decisions on the same day. We can review the information and do some research before making any surgical or medical decisions.
Our medical insurance is changing, too, and the cost of Nolan's hearing tests will increase. The new insurance will only pay for one per year, and Nolan has been having them more often due to decreasing hearing levels. He is due for a test in January, but I am going to call our audiologist to see if we can get that bumped up to December, before the new insurance takes effect. Of course, with the chronic ear infections, it will probably be a moot point - we'll probably have to repeat the test in January, anyway. I hope and pray the ear infection(s) dry up and his tubes stay clear so that we can get an accurate reading before the end of the year.
6 comments:
I'm so frustrated for you! Can't get the same doctor, Nolan reacts atypically (pain with the drops), insurance hassles... I want things to go smoothly for you and Nolan! (Where's my Magic Mommy Wand?)
In spite of all, I'm in constant admiration of you - how you cope with the issues and advocate for Nolan. Keep your chin up, and hope you have a lovely, relaxing Thanksgiving :D
Julie
Why won't they switch him to oral abx now that it is starting to clear up? Poor guy!
KayTar is always without an ear, since aids can't help her profound loss, but we usually don't notice it. Though, the other night at dinner (at a noisy restaurant) she kept turning her face from us and we couldn't figure it out...we even switched chairs because we thought she was wanting to watch the people behind us, but nope...she was just turning her good ear towards us! LOL. I also notice it when there is a loud noise and she covers just her one ear. It always makes me chuckle a bit.
Julie, it is a pain (literally) for him - I asked the Physician's Assistant about the pain, and he said the Ciprodex drops are acidic in nature and bother some kids. He said the steroid in the drops might play a role, too - but we do need another option (though I know our ENT is just going to suggest fundoplication, since we're fairly sure the reflux is the cause of the ear infections in the first place).
We do get frustrated, but we ARE thankful that we have insurance, and we are thankful that we live in a first world country with access to healthcare! We're looking forward to a yummy Thanksgiving!
Kyla, I have no idea why they are SO averse to the oral abx. He only has one more day with the drops - I need to check with the otoscope to make sure the EI is gone. He has a history of getting prolonged infections that won't clear out.
Too funny about KayTar covering one ear since the other ear can't hear - Nolan covers the mics on his hearing aids or simply takes them out. We do wish Nolan had a "good ear" to compensate for the dead one - but even the "good" ear is moderately severe and dropping in hearing level. Blurgh.
At least the new insurance plan looks like it will cover hearing aids - I have a feeling nice Phonaks would give him better sound quality (unless he drops solidly into the severe range, at which point we'd have to start considering other options).
Leah
Can I ask why you would have to look at other options if Nolan hearing drops to the severe range? Just curious why. My son was diagnosed bilateral moderate to severe. We don't know yet if it is progressive or not.
Have a Happy Thanksgiving!
Liz
Hi Liz,
Nolan's hearing loss is a mixed loss, and we can only get him aided to about 35dB in the high frequencies, and about 40dB in the low frequencies. When there is a conductive component, the aids take more power to get the same amount of gain. His worst loss is in the low and mid-frequencies, which is difficult to aid (most hearing aids are designed for a typical high frequency loss, not a "reverse slope" loss).
If Nolan drops into the severe range, his current hearing aids won't be able to handle his hearing loss level. He is currently 65dB rising to 55dB (or was, as of July 2011). It only takes 10 more dB to drop him out of range for his current hearing aids.
So if he ends up in the severe range, we basically have three options:
1) Look at power aids - this is the route we are most likely to take. Phonak makes Naidas, which could handle a severe low-frequency loss.
2) Take a second look at the BAHA option, though Nolan's bone conduction results are now borderline for that device, and I would hate to have them implanted in case we have to eventually consider:
3) a cochlear implant - if Nolan drops in the severe-profound range, this could be an option. Kids with a severe hearing loss are borderline candidates, so we wouldn't consider this right away. But if options 1) and 2) don't work well for him, then we would move to this direction.
I'm pretty sure the Naidas would help a lot, but Nolan has a big difficulty with earmolds and ear infections. He goes for 2-3 months at a time without amplification because of chronic ear infections.
There is another option out there, but not FDA approved in the United States yet. Med-El has the vibrant soundbridge, which works for mixed hearing losses and doesn't require healthy ossicles to function. It is a direct-drive hearing aid for moderately severe losses - works better than the BAHA for severe mixed losses, but it isn't approved yet.
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