Recalcitrant Infection

When an infection lingers for six weeks, is resistant to amoxicillin and Ciprodex, and begins to threaten a child's residual hearing, something has to be done. The ENT's office stated we couldn't be seen until September 13, and I was reluctant to go back to our pediatric "random doctor of the day" clinic.

Instead, I called the ENT's office and plead our case: a child with pre-existing hearing loss, persistent infection, and antibiotics that aren't doing any good. While our ENT is out of town for an extended period of time, they could get me in today to visit with a physician's assistant (PA). I leaped at the opportunity. Could we be there by one o'clock? Sure!

I looked at my watch: 10:50am. We have to leave by 11:00 to make it by 1:00- I threw the kids in the car, added a few Capri Suns and a diaper bag, and headed out. Of course, this sudden journey meant that lunch was catch-as-catch-can. I'm pretty sure I won't be winning "Mother of the Year" for their lunch today (some breakfast bars, 'Nilla Wafers, and string cheese). Oh, well. We'll make up for it with an especially nutritious dinner.

The PA took a look at Nolan's ear, and decided to culture the nastiness within. Nolan was quite good and sat patiently while the PA looked for "Spiderman." Thank you, John Tracy: he never cringes from the otoscope because of the hope of a lurking Spiderman. That little trick has served us well over the past few weeks! The culture was quick and painless, and we should get the results from that test in a few days. It will be interesting to see if Nolan is infected with an antibiotic-resistant strain of bacteria.

In the meantime, the PA decided to suction out the gunk from Nolan's ear. The ear vacuum is Nolan's least favorite invention on the face of the planet Earth. We tried to do it without papoosing him, but we resorted to the full body restraint and a nurse assist. He proved to be tiny but mighty- but we got the job done. The little guy hates the Big Scary Ear Sucker, and I don't blame him. It's loud, it is poking into an infected and tender area, and he has to be held down against his will. It is also (unfortunately) necessary and the antibiotic ear drops will be able to reach his middle ear now.

We are to continue the Ciprodex, in addition to a new antibiotic ear drop (Tobramycin). Aminoglycosides always make me nervous because of the whole ototoxicity thing, but the persistent infection isn't great for his hearing, either. Technically, Tobramycin is an eye drop, but the germs in his ear don't know that (it hits gram-negative bacteria that are resistant to Ciprodex). Nolan hates ear drops, and now he gets two different kinds every day. If the infection doesn't clear up after this round of medication, we have to come back.

We still have our appointment on the 13th to discuss the whole shifting hearing levels thing, so any remaining infection can be dealt with by our trusty ENT. I really, really hope the infection is gone by then!

Bone Conduction Hearing Test

Nolan, with balloon-cat hat and kitty face.

For a quick recap, we have a hearing test that shows a rising slope audiogram via bone conduction (January 2010 at Buffalo-BHSC) and a hearing test that shows a traditional slope via bone conduction (July 2010 at John Tracy).

Since these two test results are the exact opposite of each other, we wanted to get a third test to clear up whatever conductive component might exist to Nolan's loss. The test yesterday showed (wait for it)... a third configuration! BHSC managed to get bone conduction with masking, which means they managed to get the bone conduction scores in each ear, individually.

While I can't remember the exact numbers, he is showing something that looks like a shallow cookie-bite configuration in both ears. His bone conduction score was 25/30dBdB at 500Hz and dropped to 50dB at 1000Hz, then came back up to 40dB by 4000Hz. He was extremely reliable, so now the question arises: does he have fluctuating bone conduction levels in addition to fluctuating sensorineural levels?

Our test in January showed a conductive component, but only in the high frequencies. The test in July showed a large conductive component from 250Hz-1000Hz, with normal cochlear function in that range. The test yesterday showed a conductive/mixed component at 500Hz, but sensorineural across the rest of the testing range.

*Insert hysterical laughter*

The only thing we can be sure of is that his loss is fluctuating across all frequencies. Our audiologist is suspicious that something was missed on his CT scan- we need to take another look at his vestibular aqueducts. This is the only thing that causes an air-bone gap in the low frequencies with fluctuating hearing thresholds (the fluctuations occur when there is no fluid or infection present, so these changes in hearing level have nothing to do with his ear infections- we omitted those results). The next step is to see the ENT, to review the data and determine what to do next. This might include a FOURTH hearing test at an independent location, where we're likely to get a fourth result.

We did not do air conduction thresholds yesterday, except for a quick Speech Reception Threshold (SRT). His SRT is 55dB in one ear and 65dB in the other (my guess is that his infected ear is the one with the worse air conduction threshold).

Speaking of the infected ear, it looks pretty bad. I have to call the ENT this morning to beg and plead to get in. The amoxicillin did nothing for it, he's had it since the middle of July, and is now at risk for complications from a long term ear infection (namely, mastoiditis: something we'd really like to avoid).

Once we get the infection cleared up and talk to the ENT about Nolan's fluctuating hearing loss and random air-bone gaps that seem to shift frequencies, we'll go back to Buffalo for the air conduction scores (these are what he really hears and are in the moderately severe range).

It's really hard to set hearing aids for constantly shifting targets- our only solution may be more frequent audiological testing.

Still Infected

Alas, the "pink medicine" is completely gone, and Nolan's right ear is still sticky. I took a peek in there with an otoscope, and it doesn't look good. Thankfully, I have oodles of Ciprodex. I am giving Nolan the Ciprodex twice per day in the hopes that it will stave off some of the infection! The pediatrician will be called to (hopefully) get in tomorrow for a different oral antibiotic. The amoxicillin didn't cut it this time! We can't get in to the ENT until September 13, so we're doing the best we can until that date rolls around on the calendar.

Nolan has his bone conduction hearing test* today, to try and replicate the results we obtained at the John Tracy Clinic. If we get the same results, then we know that Nolan's low and mid-frequency loss is largely conductive in nature. I have a feeling our September 13 appointment with the ENT will be a rather long one.

*For those who are worried about the ear infection affecting the results of the hearing test: we are running a bone conduction hearing test, which bypasses the middle ear and any possible infection or middle ear dysfunction. The infection won't have any effect on the hearing test results. It will have an effect on his air conduction scores in the right ear, of course!

Sleep Study Results: Round 2

The wait for the results of Nolan's most recent sleep study has been excruciating. Since breathing seems to be rather vital for growth and survival, it is an issue that frequently weighs on my mind. The results are a bit of a mixed bag- I'll start with the good news.

Central Apnea:

Nolan's central apnea has improved by quite a bit. In the first study, he had 60 central events with his oxygen plummeting to 79%. The apneas were about 10 seconds in length, which was troubling considering his apneas were so short.

In the most recent study, Nolan only had 10 central apneas. TEN. The lowest oxygen saturation was 90% (for 12 seconds), which is a considerable improvement! The length of the apneas was anywhere from 10-15 seconds.

And now the "bad" news:

Obstructive Apnea:

Nolan's obstructive apnea in the first study consisted of 3 obstructive events and 41 hypopneas.

The current study shows that his obstructive apnea has actually gotten worse, post-tonsillectomy. He had 69 obstructive hypopneas. A normal Respiratory Disturbance Index (RDI) is <1.5 for children. Nolan's RDI is 11.5.

This is considered "moderate" obstructive sleep apnea for the pediatric age range, and is generally treated with C-PAP. Unfortunately, the neurologist noted that he has mild frontal bossing and a decent amount of midface hypoplasia. This means she's not very keen on the idea of a C-PAP mask on a still-developing face, when there is already an underdeveloped midface. The pressure of the mask could cause further problems with his still-growing bones.

Our treatment options are as follows:

Option 1: C-PAP. We could start C-PAP now and just watch Nolan's face carefully for any worsening of his hypoplastic mid-face area. The benefit is that it should solve the obstructive apnea and aid in any central apneas. The negative is the obvious issue with Nolan's facial structure.

Option 2: Medication. We could start Nolan on two different drugs (essentially steroids) to see if they help clear up the obstructive apnea. This is usually reserved for milder cases of obstructive apnea, but it remains an option. I'm not keen on this plan, for two reasons.

One is that all medications have side effects, and I don't know if the benefits outweigh the risks. The medications may not help, and the effects of the medications on a growing child concern me. The other reason I'm not keen on this plan is that we don't know why Nolan has obstructive apnea. He's not overweight (actually slightly underweight) and his tonsils were clearly not the cause of the apnea. Throwing him on more medications in the "hope" that it "might" help seems a tad rash to me.

Option 3: Watch and wait. We'll do nothing now, and follow-up with a sleep study in 6-12 months to see where things stand. Based on the information at that point, we'll make treatment decisions.

This is the option we chose. We'll do another sleep study in May, nine months from now. If the apneas (of either type) get any worse, we'll initiate C-PAP or BiPAP. If they stay the same, the likely solution is C-PAP or BiPAP. If they get much better, then I'm throwing a party and you're all invited!

We'll see what the ENT thinks of the latest round of information. Overall, the sleep study results are much better than the baseline study. We'll remain cautiously optimistic until we get the results from the May 2011 study!

Getting the Most Out of Summer

Nolan in the Chautauqua Gorge

Our regular computer is down again, this time for the count. In the meantime, I will be posting from the laptop, which is rather temperamental. If my posts in the coming days are rather sporadic, bear with me. The technical difficulties should be resolved soon!

Nolan's ear seems to be drying out, which is good news. He'll be on "pink medicine" (Amoxicillin) for another 5 days, along with the dreaded ear drops. I've been leaving his hearing aids out to allow his ear canals access to fresh air. This helps with the moisture issues, but also results in lots of shouting and jumping around to get Nolan's attention (we sign to him in these situations, but we have to get his attention first). Hopefully we'll be back to full-time aid wearing very shortly.

With only two (TWO!) weeks left of summer before school starts, we have been visiting local hiking trails and pools. This has resulted in several injuries on my part (did you know slate is very slippery when wet?) and two very happy kids. Nolan is quite pleased to go anywhere there is water, though we are being very careful about his head/ears getting wet. Luckily he is not a fan of getting water up his nose, which means that his head stays very dry.

I'll update again when we get any news (namely, a certain sleep study report), but until then, we're off playing in the summer sunshine!

Drying Out

Playing in Box City

We headed out to the pediatrician's office yesterday, to get a gander at Nolan's leaking ear. The random-pediatrician-of-the-moment peeked with the otoscope and declared a rather severe infection. He can't even see the eardrum, because the infection is so thick it is completely occluding his ear canal. The solution? Ten days of Amoxicillin and Ciprodex ear drops. If the infection doesn't clear, we are to return to try something stronger. Hopefully the Amoxicillin will wipe the infection out.

Nolan hates ear drops. He'd rather chug oral medications by the truckload than deal with the sensation of liquid sliding down his ear canal. You can imagine the fun we're having pinning him down several times per day for the infernal drops.

Hopefully, in ten days, the infection will be gone and we won't see any more leaky ears for the rest of the year. A girl can hope, can't she?

Leaky

Perhaps Nolan's little art demonstration yesterday was really his attempt to write us a letter:

"Dear Mom: Just as an FYI, my right ear is going to start leaking again tonight."

Remember the ear infection he developed in California? We treated him with Ciprodex for the recommended period of time, things seemed to dry up, and we were relieved. Until last night, that is. Nolan started chucking his right hearing aid across the room yesterday, which usually indicates a dead battery or an ear infection. Sure enough, there is sticky fluid in the ear canal.

Beautiful.

We're off to see the pediatrician at 4:00 today. We're in for more Ciprodex and possibly some oral antibiotics. Ugh.