Tuesday, August 3, 2010

ENT - It's fun to visit specialists!

I've been trying to get Finleigh in to see an Ear, Nose, and Throat Doc since March.  Her expressive speech is in the 1st percentile and she always has slightly abnormal results when she goes for her audiology tests.  She hears in the normal range, but she always seems to have negative pressure in her ears.  I wondered if they could be related.

Probably not, according to the nice ENT we went to visit last week.  And, of course, I knew in the back of my mind that it couldn't possibly be that easy but I hoped that some tubes or a little procedure would suddenly fix all our problems.  Ya gotta hold onto something to get you through the day, right?  Finleigh is, however, going to get an ABR.  This will measure her auditory brainstem response.  Which will tell us - I think? - if her brain is registering what she's hearing.  She has to be put under.  It's booked for the end of October.

That's the short version, so if you're just interested in the abridged version, stop reading here.  But if you'd like to hear all the dirty details and my emotional response, settle in.  You might be here a while:

If you have a young child and have an appointment, you may want to avoid booking an appointment for just before lunch.  If you can at all help it, which you can't when you've been waiting and hoping for months and you're from out of town.  Why, you ask?  Well because in my experience, doctors (especially specialists) run late.  Like ours did the other day.  By almost an hour.  So when you book for 11:50 am, eating before hand could be a good idea.

We weren't really thinking.  I was so focused on getting to the appointment, I didn't plan and bring food.  Or drinks.  Or anything to entertain the kids (which I've given up doing anyways because my girl is rarely distracted by what I bring).  I did happen to have my iPod in my purse, which helped keep the boys quiet, at least.  To top that off, we'd been up since 5 am.  We had to turn in the motorhome we'd rented that morning and we were 2 1/2 hours away from where we had to drop off the stupid thing AND we had to clean it before we dropped it off.  It was a very long morning.

Hindsight tells me we should have changed our plans, but in our infinite wisdom, we figured we could do it.  And we did, but not without a run to the cafeteria by Brian for drinks and a pretty major meltdown by my daughter 10 minutes before we were finally called in.  So, of course, she was in perfect shape to have her ears looked in and examined.

The appointment went fairly well.  He cared what we had to say and I'd brought in some copies of speech and audio testing that she'd had which ended up being useful.  The boys were really good and the doctor even commented on it.  That's always really nice to have happen.  He looked in Finn's ears.  They look normal.  He said her results were relatively normal for children due the size of adenoids and things like that.  He said the only thing we could do was have an ABR (see above) done.  If that came back unremarkable, then the only other thing he could think of to do was get in to see the developmental pediatrician.  I told him we'd started that process.  He told us we were on top of things.  I told him that we're trying really, really hard.

The only other thing that I remember from that appointment, besides Finleigh's copious amount of crying, was when I commented on how behind her speech is.  "Compared to what?"  He asked.  "You're boys?"  "No.  Compared to everyone." And then I pointed out her speech therapy testing.  No dear doctor.  I'm not just another overly worried, competitive parent.  My daughter has real issues.  

He then filled out a form and sent me across the hospital to the audiology department to book an appointment for the ABR.

As we walked over to audiology, I was feeling pretty good about things.  No, we didn't get the simple fix I was hoping for.  But we were still going to have more investigation.  We'll learn a little something more about our little girl.  Even if it isn't the problem.  And we've done anesthetic before... it's not such a big deal.

We turned to the corner to where the audiology department is and the corridor was blocked off for construction.  Which meant that we had to walk all the way around to the other side.  3 tired, hungry kids.  2 tired, hungry parents.  1:30 pm (or thereabouts).  As we walked past the cafeteria, I suggested to Brian that he stay with the kids and feed them while I go to make the appointment. (Which turned out to be an adventure in itself because he forgot that they only take cash and so after ordering the food and having it in hand, had to leave it with the cashier and walk to the bank machine, get cash out and then go back to pay for the food, all the while carrying our 30 pound daughter who despises strollers and walking by herself unless it means she can wander away and get into trouble).

When I reached audiology, the receptionist told me to sit down and they'd be right with us.  I found this weird but figured that maybe there was someone else who booked the appointments.  So I sat down for a couple minutes and after thinking about it, went back up to inquire if I would need my daughter for this.

"Yes."  She replied as if I had two heads.

"But, I thought I was just supposed to book an appointment.  The doctor told me she'd need to be put under."

"Well, they always try doing it awake first to save you the anesthetic."

Errrr... okay.  I guess that sounds reasonable.  "I'll go get my daughter.  I'll be right back."

I do the quickest walk I can without running to get back to the cafeteria.  Grab my daughter who's about to take her first bite out of her grilled cheese sandwich, grab an onion ring (oh yum!) and carry my eating daughter back just in time for her to get into playing with a toy when we're called in... for a regular hearing test.

Yes, you heard me.  All that for a regular hearing test.  You know, the one we've had at least a half dozen times before.

I stopped her after the first test and inquire about the ABR.  She then told me that she strongly recommended that we don't do that and explained why.  I honestly don't remember much of what she said.  The only reason she could see to do it was as more of a way to rule things out.  But that was why we were here. Didn't the doctor write it on the form?

"Nope," she said.  "He just sent me a blank form."  She flipped over some piece of paper that had been stapled on top.  "Oh, here it is."  Her demeanor immediately changed and then we walked back to reception and we made our appointment for October.

The whole exchange left me wondering if we really should be doing this test.  Are we putting Finleigh through unnecessary testing?  And yet if we don't do it, won't we always wonder?

It was a long 2 1/2 hours, but then we got to go to my sister's house and collapse, which I was glad for.

And that was our fun visit to the ENT.


  1. Wow, such a simple appointment turned into quite an ordeal for you and the kids!

    We discussed Gracie having an ABR a few years ago but never did it. I still have moments where I wonder what that test would have shown. So, my opinion is to go ahead with the test, especially if she does well with anesthesia.
    Good luck!

  2. oh Amanda... I say don't worry about putting her through "unnecessary" testing... you guys need all the info you can get.

    And ya... going to the doctor is torture no matter how well planned out it is.


  3. Man! Talk about the run around for you guys that day! Frustration probably under-estimates the feelings about that whole ENT visit. Hopefully the ABR will be helpful and I say too, that if it helps even to rule things out, go for it. YOU know how Finleigh is, not some Dr. who's seen her for 2 min. Beck had an ABR, but he was 3 months old and we didn't get the testing complete because he woke up. Sometimes those crazy days happen where you feel like yelling - everyone STOP and let me breathe for a second! Will look forward to seeing how her ABR results are like.

  4. Hope you don't mind a comment from a stranger (found your blog off google): Definitely do the ABR. It is totally objective and they use "light sedation" (usually Versed, aka "silly juice") to help the child sleep. It will set your mind at ease!

    I have one child who had a severe speech delay, and I have one child with a hearing loss (ironically, my kiddo with hearing loss has normal language development).

    We got the same run-around with my older son (severe speech delay)- comments like, "He's a boy, they talk later," etc. Speech therapy was what he needed, and he just graduated at 4 1/2 years of age. He went from no words to having a good vocabulary in the two years of speech therapy.