Ear Goop and Hives

Nolan's ear was absolutely packed with gunk this morning. I called the pediatrician and managed to get in at 10:45am. The nurse practitioner was quite busy with sick kids this morning, so we weren't seen until 11:30. She took one look at Nolan's ear and prescribed Ciprodex drops AND an oral antibiotic. Thank goodness - this kid has a hard time beating ear infections, and hopefully we'll knock this one out in a week or less. We've been calling him One Ear for the past couple of days - it is amazing how much losing an ear really affects his ability to compensate for the other (hard of hearing) ear. We have to repeat things quite a bit more when one ear is completely gone, even when the "good" ear is aided.

Then it was time for Bumpy. Poor, itchy Matt. The nurse practitioner looked at the rash for quite some time, and couldn't decide if it was viral or an allergic reaction. The problem is that the rash looks viral when it starts off - lots of single, itchy, pimply bumps:

The rash is also spreading like a virus - only on the extremities and not over the entire body.

After the rash has been in place for a day or so, though, it turns into welts. Which look like an allergic reaction, not a virus.

A second pediatrician was called in to take a look. He said (and I quote), "Now there's a puzzle."

We don't really know what it is, so they said to keep him on Benedryl every six hours, and to keep him cool (heat can make allergic welts worse). So no school tomorrow and no hockey tonight, at the very least. If the rash gets worse in any way, we're to call immediately.

I hope it just disappears so we can forget about it.

We then went to Rite Aid and played "Have Fun at the Pharmacy."

Fortunately, my kids are easily entertained and think that a water cooler is the coolest thing on earth. Antibiotics (for Nolan) and Benedryl (for Matt) in hand, we went home. They're hanging out and enjoying the day off school - and Matt is thrilled that he gets a bonus day off.

The pediatric surgeon also called this morning, but that's enough material for another post (or two), so I'll save it for tomorrow. At least we have Bumpy and One Ear on the path to wellness!

Ugh.

This picture sums up our weekend:

Nolan has another ear infection.

In other news: Grass is green! Rain is wet! Dogs bark!

Acid Reflux, I hate you. 

When it rains, it pours. Matt hasn't been "well" lately, either. He's had a molluscum infection for approximately... forever and developed staph infections in several of the lesions. He was cultured to see if it was MRSA (the methicillin resistant staph bug that can be particularly nasty), and the results came back as regular, plain old staph. I never thought I would be happy for a staph infection, but there you go.

The worst boils were lanced and he was placed on Bactrim, a rather strong antibiotic. The boils healed, though the underlying eczema and molluscum infection are still going strong. On Friday night, I noticed that he had a few more bumps than usual on his legs. Was he getting a virus? I posted a picture on facebook so everyone could play "guess the rash."

The poor kid is itching like crazy. Ideas like chicken pox (he's been vaccinated) and Hand Foot Mouth Disease (though HFMD doesn't itch) were brought up by the Almighty Google. The welts began to swell and spread, and I started suspecting an allergic reaction. By Saturday morning, it was on his hands arms, in addition to his legs and spreading up to his waistband.

His knees and elbows are particularly bad, and are one giant coalescence of The Great Itch.

The good news: a new urgent care opened up in our community. The bad news: the urgent care is closed on Sundays!

We are giving Matt lots of Benedryl and applying caladryl lotion to the welts. 

I am calling the pediatrician in the morning to get both boys in - I hope they have some sort of two-for-one deal going on. 

September ENT Visit

I took Nolan in for his routine ENT visit. Of course, with Nolan, there is almost never anything "routine" since he has a plethora of ENT problems.

Fundoplication vs. C-Pap

We discussed putting off the fundoplication indefinitely, though I realize we may have to revisit the issue again in the future. Our ENT feels that Nolan's "awful August" was directly caused by the C-Pap - he started C-Pap therapy in August and became very, very ill with retching, choking, and exacerbated reflux symptoms. Apparently, they've seen this reaction in the other kiddos with severe acid reflux. On the other hand, Nolan is doing extremely well this month, and seems to be tolerating the full-face mask much better than the nasal masks. Either he has adjusted or we're just having a great month. Time will tell, but I have every finger and toe crossed that the full-face mask is simply negating some of the issues of the nasal mask (the nasal mask forced air directly into his nose, whereas the full-face mask simply pressurizes the air around his entire face).

Balance Issues 

Nolan was quite wibbly-wobbly in the office and fell a couple of times. We've seen this at home a lot, but it is the first time he's done it in a doctor's office. We've been attributing it to his sometimes wonky gait or to his amblyopia (both of which can cause "clumsiness"), but she thinks he has something vestibular going on. It would make sense since he has had a progressive hearing loss, but we'll see. She wants to do some sort of test in a spinning chair, but I don't really see the point. If it is vestibular, it isn't like we can do anything about it. She does want him to avoid contact sports that might result in a blow to the head because of the balance and hearing issues - which is strange, because he doesn't have enlarged vestibular aqueducts (these are the precautions usually given to kids with that "issue" who still have residual hearing). I'm letting it go - he's a little clumsy now and then, but it isn't the end of the world (and it isn't really a "fixable" thing, anyway).

Sinus Issues

His sinuses are horrible, of course, but they have been horrible for the past three years. With his form of acid reflux, the acid shoots past the esophagus and hits the nasal passages and airways. She ordered a CT scan of his sinus cavities to see how much damage has been done: cue episode 547 of "Reflux Sucks." Since he is a C-Pap user, he may require intervention with his sinus cavities, since they are chronically infected and he can no longer breathe through his nose. Another thing that I'm not too worried about, but we'll see what the CT scan shows.

The Dreaded Earwax

He had wax in his left ear, so we had to take a walk to the procedure room and use the Papoose Board of Doom. Since he has long-term tubes in his ears, we can't use DeBrox or any of the other over-the-counter wax  removal products. We're stuck with the ENT's metal earwax removal device, which Nolan loathes. Actually, loathes might be too kind of a word. He completely flipped out once we went into the procedure room - he remembers this room and hates it with an unparalleled passion. I can't say as I blame the kid.

A Reward for a Difficult Day at the Doctor's Office

After the wax removal, Nolan's ear hurt too much to put the hearing aid back in place. He was rather unhappy with all of us, so I tried to cheer him up with a trip to McDonald's. We don't go very often, but I looked up a McDonald's with a great indoor playground, which happens to be right next to the ENT's office. They had eating booths that looked like trains and a massive indoor playground. Nolan was happy by the time we left (thank goodness).

We will have the CT scan performed (outpatient, no sedation required) and return in early November to discuss the results with the ENT.

At least October is nearly doctor free!

In Which I am Very Stealthy

Matt and Nolan at Library Story Hour.

This blasted ear infection is driving me crazy. It isn't exactly clearing up, and the ear drops are such torture for Nolan. I discovered a way to get the ear drops into him without any upset, though. I wait until he's deeply asleep, then I sneak into his room, put the drops near his ear canal, tip his pillow, and then hold my breath for 2 minutes. He fusses for just a second, then goes right back to sleep.

I have excellent ninja skills.

This tactic does not work in the early morning, however. When I try giving him ear drops at 6:00am, I end up with a howling, angry boy. Apparently, my ninja skills do not work during daytime hours.

Anyhow, his ear is still leaking some fluid and looks kind of nasty through the otoscope. I'm not a doctor, but I'm pretty sure "oozing" means "still infected." I'll give it until Friday (one week), then I'm either calling the pediatrician back or calling the ENT's office. I don't want a repeat of last year's 8 week long epic ear infection.

Ugh.

Dancing with Insurance Again

The sleep neurologist's office called to let me know that the CPap information had been sent to the Home Healthcare Company (HHC). I gave the HHC a call to determine what we needed to do next (if anything): apparently, we just have to sit tight and see if our insurance company will pay for a CPap machine. The insurance company will likely require an authorization, then they'll decide if they will chip in for the machine or not. You know, because breathing is totally a "lifestyle choice."*

Like hearing aids (and many other "durable medical equipment"), CPap machines are often not covered. Fortunately, we'll "only" be out about $1,000 if our insurance company refuses to pay for the machine. We'll see what happens.

In the meantime, Nolan is sporting his first ear infection since getting T-Tubes. He brought me a clogged hearing aid and a leaky ear: it isn't pretty, folks. He has gone nearly 8 months without an infection, which is pretty record-setting in our world. Hopefully a round of Ciprodex drops will clear this one up (oh, the joys)!

*Hearing aids are often not covered because wearing them is considered a "lifestyle choice" among adults. Unfortunately, children learning to listen and speak are adversely affected by the refusal of insurance companies to cover hearing instruments.

ENT Visit

Wiped out from running

I am not quite sure how to fit the events of yesterday's ENT appointment into one post (it should really be three separate posts), but I am going to try.

The Never Ending Ear Infection

The "gunk" in Nolan's ear was not a sign of active infection. The ENT took a look and noted the material was definitely occluding the ear canal, but the eardrum and ear canal skin looked great. There did appear to be a large perforation behind the tube. She took him back to the Big Ear Sucker of Doom and removed the gunk. She also looked at the eardrum under the microscope, and noted the tympanostomy tube was actually lying on top of the eardrum. She removed it, and the "perforation" disappeared- it was just an optical illusion cast by the shadow of the displaced tube.

I was so greatly relieved by the news of the finally-resolved infection, that I didn't notice her grabbing the pneumatic otoscope. She made a "hmmph" sound and I looked up. She looked at me and said, "Fluid."

Rats.

So the never-ending-ear-infection is gone, but a new one is starting. The left tube is starting to extrude from the other ear as well. These were intermediate-length tubes, so they should have lasted for at least a year. They lasted for about 4 months.

Surgery is scheduled for October 12 to place a fourth set of PE tubes. This time, they'll be "long-term" tubes- I suspect they will be placing "T-tubes" into his ears on this occasion. The negative of T-tubes is that they must be surgically removed. The benefit is that they will not fall out in another 3 months, so we should be able to go for a longer period of time between surgeries.

The Random Hearing Test Results

Obviously, we need to figure out what Nolan's hearing levels truly are, and why his hearing levels fluctuate so much. We also need to determine the exact type of hearing loss for each frequency. Since we have three different bone conduction results from two different sites, we are going to have a full hearing test run at Buffalo Children's (WCHOB) sometime after his fourth set of tubes is placed. This test will be used as a "referee" for all of the other tests. Unless, of course, we get a fourth result. Anyone want to take some bets?

The Whole Apnea Thing

We're quite thrilled that the central apnea has all but disappeared. Unfortunately, the obstructive apnea has only gotten worse with time, and the ENT is not pleased. The neurologist labeled the obstructive apnea as "moderate," but the ENT heartily disagrees. It is quite severe, but she believes the neurologist downgraded her reading because she doesn't want to put a C-Pap mask on a child with a recessed mid-face (the pressure of the mask would only cause more mid-face retraction as his skull grew).

While the neurologist wanted to try a few steroids to see if they would help with the apnea, the ENT was appalled at this idea. Those drugs are only used for very mild obstructive apnea- and they're only used for apnea caused by congestion. Nolan's apneas are completely unrelated to congestion (for that matter, so are his chronic ear infections).

To determine the best course of action, the ENT wants to find out why Nolan has such severe obstructive apnea. Since he's going to be sedated for the tubes on October 12 anyway, she is going to perform a flexible bronchoscopy while he's out. A scope will be passed through his airway and into his lungs to find the level of obstruction. We should find out the results on the day of the procedure, so we will have more guidance on how to treat the remaining obstructive apnea.

We are going to have a busy October, but at least we'll have a bit more information on Nolan's hearing and breathing issues!

Preparing for the ENT

The home front has been quite busy recently, with getting IEP services into place, preparing for Nolan's first day of preschool this Tuesday, and a marathon (Dennis, not me).

Very rare: a picture of the entire family

Things are ticking along as expected: we have secured a Teacher of the Deaf (TOD) for Nolan, and she is wonderful (we know her through various events with the local Jr. Deaf Club). We'll start his monthly monitoring services soon, and she'll be instrumental in helping us set up his FM system.

We have an appointment with the ENT tomorrow. As far as I can tell, Nolan's ear doesn't look great. Mr. Otoscope says there is still a lot of whitish gunk* in his ear canal, though the tube is visible and clear. I'm not sure if the gunk is simply leftover material from an infection that has been killed off, or if it is a sign of active infection. I guess we'll find out tomorrow- I certainly hope the infection is gone.

We also have to ask the ENT for her opinion on the bone conduction testing from the John Tracy Clinic. We had Nolan's bone conduction scores run again in Buffalo two weeks ago, but we have not received the report in the mail. This is rather unusual, since we usually have the report within a week or so- because of this, we won't have the results to show our ENT. In the long run, I suppose it doesn't matter. I might request a referral to the Cleveland Clinic to obtain an audiology and ENT consult- we aren't making any headway with the confusing results in Buffalo, so perhaps another site can sort things out for us. In any case, we have to get a handle on Nolan's general hearing levels and type.

The lowest priority issue will be discussing the sleep study results- we've chosen the "watch and wait" method of treating it, even though we know it is unlikely to simply disappear over time. The ENT also handles sleep apnea, so I'm sure she'll discuss these results with us again. We've already gone over them with the neurologist, so I expect there won't be very much time spent on this particular area of concern.

Tomorrow will be a busy day, but hopefully we'll walk out of the office with a few more answers than questions!

*I'm pretty sure gunk is the technical term.

Getting Crafty and the Unrelenting Infection

I used to love scrapbooking, but then tiny fingers came along, and the scissors and other tools simply created mayhem when I tried to get anything done. This is why Nolan's baby scrapbook goes up to the ripe old age of Four Days Old. A friend introduced me to digital scrapbooking, and I may never turn back! Here is a page I am creating from Nolan's John Tracy experience:


Nolan is still battling his ear infection. Honestly, I have no idea what the ENT is going to do when we return on September 13 - the potential consequences of this ear infection terrify me. I have to call the office on Wednesday, because that is the date we are supposed to stop using the medication in Nolan's ears. If the infection is still present, I am loathe to stop medicating (if the meds are not eradicating the infection, at least they are preventing its spread). We are due up in Rochester next weekend (Dennis is running in the Rochester Marathon), and I am afraid Nolan's infection will rage out of control if we don't figure something out soon.

Nolan has been fairly accepting of his one-eared status, though he told us the other day, "Maybe we go doctor and doctor fix my ear. Then I have TWO hearing again!" He desperately misses hearing from his right ear: this boy loves his sound!

Fungus Among Us

The Rite Aid managed to find the right anti-fungal medication for Nolan's ear. Just in case anyone else ends up in the same predicament and has the pharmacist try to hand them a certain feminine anti-yeast cream, here is a picture of what the medication should look like.

This is quite a big difference from the *ahem* first dispensing method they tried to offer us. I placed the first drops in his ears last night. So far, his ear is still quite infected. Hopefully things will improve over the next few days!

While solutions of vinegar and/or rubbing alcohol are commonly used for fungal outer ear infections, this is not advisable for any child with patent middle ear ventilation tubes. Since any medication dispensed into Nolan's ear canal will end up in the middle ear space, everything from the eustachian tube to the membrane-covered oval window is exposed to the solution. The only safe medication to treat the fungus at this point is a non-ototoxic medication, which has a fairly neutral pH to prevent irritation and pain. The reason the Ciprodex drops were so painful was the low pH in the medication, which burned when in contact with the raw skin in Nolan's ear canal. So far, he seems to be handling the anti-fungal drops fairly well.

In other news, we are preparing for preschool. The 3 year old class requires a potty-trained child, so we have jumped in with both feet and have candy, a potty (chosen by Nolan), and lots of training underwear. The score so far- puddles: 2, potty: 1.



Wish us luck: preschool starts on September 14!

Of Dinosaur Birthday Parties and the Hunt for Lotrimin

The Physician's Assistant told me I might get some odd looks from the pharmacy, since he was ordering a liquid suspension of Lotrimin that is typically used for Athlete's Foot for Nolan's ear. I went to the pharmacy on Friday afternoon, and the pharmacy technician said the order hadn't been filled yet. Sidenote: killing fifteen minutes in a Rite Aid with two small boys should earn any mother an award.

I returned to the counter and the tech had a big smile on her face. "Oh, no! this isn't a prescription product- it's over the counter!" Even better- I could get the stuff at low cost, and it didn't even need a prescription. I wondered why the PA had warned me about the difficulty of getting the Lotrimin suspension.

Then the tech handed me some Monistat.

"Erm... I know the main ingredient is the same, but we need this in a liquid suspension. It has to go in his ear."

I picked up the box and pointed to the applicator and cream mixture, so that she could see this was a tad different than what our ENT office had ordered. The tech looked flustered and said she needed to confer with the pharmacist.

Another fifteen minutes later, the boys had taken their blood pressure at the free stand about 50 times and the pharmacist came out from behind the counter to troll the aisles of Rite Aid with me. Apparently, the only over-the-counter formulations of Lotrimin are creams. After I convinced him that the creams will not penetrate Nolan's PE tubes to get to the source of the fungal infection in his middle ear, the pharmacist left to consult his Big Book of Medications.

He found the suspension the PA had ordered, and they have it in stock at their warehouse. This is the good news. The bad news? The suspension won't be in the store until Monday afternoon. Sigh...

Fortunately, the infection doesn't seem to be bothering Nolan very much. We had his dinosaur birthday party on Saturday, complete with Funfetti cupcakes, dinosaur pinata, and dinosaur adoption events. Everyone had a blast, and Nolan is finally convinced that he is no longer two years old. Happy third birthday, Nolan!

The dinosaur adoption center

Opening presents

Nolan vs. Tyrannosaurus

Three

Three years ago, the amazing Nolan was born. I walked into the hospital at 10:30pm, and just after midnight he was in our arms (yes, less than two hours' worth of labor: don't hate me). He is rather cuddly because of the crisp morning, so he is enjoying watching Mickey Mouse Clubhouse and relaxing on the couch. His birthday party is tomorrow, and he is extremely excited to play with his friends and decorate dinosaur cupcakes.

His ear infection has not gone away. The other night, I gave him the Ciprodex and Tobramycin drops, and he screamed for over an hour. It was horrible: he sweated and writhed in agony, and I couldn't help him.

He begged me to take him to the doctor, "Go doctor. Doctor put fists (gloves) on and take eardrops out!"

When he begged me to take him to the ENT to have his ear suctioned out, I knew he was in tremendous pain. The next morning, I did not give him his drops. I called the ENT's office to talk to the physician's assistant. He didn't want to stop the drops until we had the culture results back: if it was a resistant infection, at least we would be slowing the growth until we knew what would work. His solution was to stop one of the drops. We were allowed to stop the Ciprodex- it hasn't been working for six weeks, so there seemed to be no reason to continue it. We had to press on with the Tobramycin, however, which created a rather unhappy morning for all of us.

Fortunately, with only one set of drops, the agony seemed to last for a relatively brief fifteen minutes. I gave him the Tobramycin again last night, then rocked him for about an hour. With a sippy cup, blanket, and Mommy, he slowly quieted and was past the pain.

I haven't given him the Tobramycin yet this morning, and I am glad I held off. The ENT's office called with the preliminary culture results. This is not the full report, but it gives us a pretty good indication of what is going on with the little guy. The culture grew out fungus rather than bacteria. The antibiotic drops are only making his infection worse, not better. I am so, so grateful they cultured the ear and waited before prescribing some systemic, heavy-duty antibiotic. We are to stop the Tobramycin completely, since it will only wipe out the natural flora of the ear and allow the fungus free reign in Nolan's ear.

While fungal infections of the outer ear are fairly common (swimmer's ear), fungal infections of the middle ear are quite uncommon. The best guess is that he had a bacterial infection, which was treated with antibiotic drops. The drops wiped out the natural flora of his ear via the PE tubes, which allowed the fungus to start growing in the middle ear. His earmolds weren't helping the situation, trapping moisture and creating a perfect environment for the fungus to grow.

The next step is to pick up an anti-fungal suspension from the pharmacy. Lotrimin isn't typically used for the ears, so we were told to get some funny looks from the pharmacist. We were warned about two things:

1. The culture results are preliminary. The full report could show fungal and bacterial growth, so we may have to start the Tobramycin in addition to the anti-fungal. We'll have the full report on Monday, but with the preliminary results, treatment for the fungus can begin immediately.

2. Fungal infections in the ear can be very difficult to treat. The Lotrimin drops alone may not clear the infection. If the infection persists, a more "mechanical" method will be required. This involves suctioning everything out and painting the inside of the ear with gentian violet. Gentian violet is ototoxic, so I really, really hope the Lotrimin takes care of the infection.

I truly hope the Lotrimin takes effect before his party tomorrow!

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!

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.

EEG: Normal

If you watch the Olympics with your kids, be prepared for couch-ski jumps

I called the pediatrician's office to schedule an appointment for a rather persistent cold and fever. While there, I asked if the EEG results had come in- the office personnel said they were in. The most joyous words were written on that report: "Unremarkable."

Nolan's EEG is normal. Blissfully, wonderfully normal. A prayer answered. One less area of concern.

Ironically, shortly after receiving the normal EEG report, I received an email from a fellow mom of a little one with central apnea. She said her child also had "staring spells." Which were so convincing the neurologist ran a 72 hour EEG to rule out epilepsy. As it turns out, the child was simply so exhausted he was simply zoning out, in a very extreme way. The "staring spells" were a sort of baby-narcolepsy. This has me wondering if Nolan is doing the same thing- falling asleep with his eyes open for brief periods during the day.

The exam at the doctor's office revealed a rather nasty cold, which hasn't involved his lungs but has caused a double ear infection. Both ears are so full of fluid they are close to rupturing. We are starting antibiotics today, and hopefully the infection will clear up soon. Once we have our third set of PE tubes placed in April, we should have a reprieve from ear infections for a while.

On the central apnea front, the ENT's office called with the date of the sedated MRI. We are scheduled for March 23, well in advance of Nolan's scheduled tonsillectomy/adenoidectomy/PE tube surgery. Insurance has not yet approved the imaging (Doctor vs. Insurance: Round 1), but he is on the schedule.

ENT Update: In Which Spring Looks Very Busy

Nolan in front of our local ice castle

We headed up to the ENT yesterday to discuss Nolan's recent hearing loss, the obstructive apnea, the central apnea, and to inform her of his "staring spells," which may or may not be seizure activity. The appointment was at 3:30pm, but the ENT's office is frequently overburdened and we didn't get in to see the doctor until 5:00pm.

The general plan is:

Central Apnea:

The ENT will not treat or handle this, as it is a neurological issue. We already have a neurology appointment lined up for March 1, so the central apnea will be discussed there. In the interest of "getting the ball rolling," the ENT did order an MRI to be completed as soon as possible. Preferably before April 13, for reasons outlined in the obstructive apnea discussion.

She did reassure us that Nolan's arousal mechanism is working just fine, so he is not in any danger for the time being- as long as we don't give him any sedatives.

The ENT doesn't really know about the possibility of Arnold-Chiari (not her area of expertise), but an MRI will show if one has formed or if there is something more sinister going on. Hopefully, it will show absolutely nothing. Idiopathic central apnea sometimes resolves on its own, so we're definitely hoping for idiopathic here. Our insurance company is known for being particularly terrible about approving imaging studies, and Buffalo Children's has only 1 day per month for sedated MRI's, so getting the MRI done before April 13 seems dicey.

We will also be scheduling another sleep study, probably for sometime in May, to check on the status of his obstructive and central apneas (hopefully the obstructive will be completely resolved by then).

Obstructive Sleep Apnea:

Nolan's tonsils are not enlarged, but due to the findings of the sleep study and the chronic fluid-in-the-ears issue, the ENT wants to do a tonsillectomy, adenoidectomy, and place bilateral PE tubes again. She'll be placing Reuter-Bobbin tubes this time, as they have wider flanges and should be retained in his eardrums a little longer. The surgery is scheduled for April 13, and the ENT would like to have his MRI completed prior to the surgery.

Because Nolan has central apnea, things get a little complicated with the anesthesia. He will be placed in the pediatric ICU following his surgery, and be monitored there for 24 hours to ensure he doesn't stop breathing due to the anesthetic. He will be discharged with a prescription of tylenol with codeine for pain management, and we will have to ask the neurologist about the safety of the codeine with his central apnea. We do not currently have a pulse-ox meter with an alarm to monitor Nolan at night, though that may change after our consultation with the neurologist.

A follow-up sleep study will be scheduled about a month after surgery to verify the obstructive portion of Nolan's apnea has been resolved.

Ears:

Background: Nolan lost about 30dB in his high frequencies (his left ear went from a 50dB rising to 30dB loss to a flat 60dB loss). He does not have fluid in that ear, but did have a small perforation. His right ear had some negative pressure at the time of testing.

The ENT looked in Nolan's ears and noted the left ear looked fine, but the right ear is full of fluid. The current plan is to place bilateral PE tubes and repeat the hearing test. If the conductive component is still there, then we'll call it a permanent mixed loss and increase the amplification on his hearing aids.

The only negative is that the PE tubes won't be placed until April 13, so we will have to postpone his next booth test. He'll be under-amplified for a bit longer, which isn't ideal. In the scheme of things, however, breathing is more important than hearing. The neurology and MRI workup will take precedent over the hearing issues for the time being.

Staring Spells:

Again, this isn't under the ENT's jurisdiction, but we did inform her that Nolan has been having "staring spells" and had an EEG performed last Wednesday. The results are not in from the EEG yet, so she wrote the possible seizure activity into her notes. Once we find out if there are (or are not) seizures, we can more accurately document that in his file.

So, to recapitulate, our spring is going to be extremely busy. The schedule (as it now stands) is:

March 1: Neurology consultation
March/April TBD: sedated MRI
April 13: Tonsillectomy, adenoidectomy, and bilateral PE tubes set #3
May TBD: Follow-up sleep study
May 24: Follow-up ENT appointment

Questions for the ENT

With so many recent findings (new, conductive component to Nolan's hearing loss, obstructive sleep apnea, central sleep apnea, staring spells), I have been creating a list of questions for our ENT. I don't want to miss any information or get sidetracked, and I find that writing questions down before an appointment helps keep my mind focused during the all-too-short 30 minute appointment.

The current questions are:

Additional Hearing Loss:

1. Could a microscopic perforation really cause 30dB of hearing loss?
2. Has the perforation healed?
3. How can we determine ear-specific bone conduction levels, since the current testing only represents the "better ear?"
4. If the perforation hasn't healed, will we need to intervene in any way?
5. If a conductive component remains after resolving the perforation or any potential fluid, will we need to adjust Nolan's hearing aids? Will we need to investigate the cause of the mixed loss further (i.e. middle ear exploration)?
6. Should we place a third set of PE tubes if we're going to do a tonsillectomy/adenoidectomy?
   

Obstructive Sleep Apnea:

1. Are three apneic events enough to recommend a tonsillectomy and adenoidectomy?
2. If a tonsillectomy is recommended, will the required pain medication cause a problem with Nolan's central apnea?*
3. Will Nolan be kept in the hospital overnight if he has a tonsillectomy/adenoidectomy? This is a concern because of his low weight and the lack of pediatric facilities in our local area.
   
4. What are the risks of general anesthesia for the tonsillectomy, considering the central apnea?

Central Sleep Apnea:

1. What are the treatment options for a young child with central sleep apnea?
2. Should he have an apnea monitor or a pulse-ox monitor at home?
   
3. Is Arnold-Chiari a possibility, since we had a normal CT scan and a normal MRI?
4. What questions should we ask the neurologist about this condition?
5. What other professionals should be involved in Nolan's care?
6. What are the risks and long-term effects of central apnea?
7. Is this a permanent problem, or will Nolan outgrow it?

Staring Spells:

1. By the way, he's also been having staring spells and we had an EEG performed recently. We do not have the results of this test yet, but there is the suspicion of absence seizures.
   

The last one isn't really a question, but I want to remember to let her know about the "other" neurological issue we've been noticing recently. If anyone has any other questions, I'd be grateful for suggestions. I want to make sure we have all our bases covered, and have a good plan of action after this next appointment!


*We've been told that Nolan should not have any sedatives in any form-they could interrupt his "arousal process" with the central apnea. If a person with central apnea takes a sedative, they may not be able to wake up to start breathing again.