November 27, 2013

Audiology Evaluation

Anyone who says prayer doesn't work has no clue what they are talking about.  Since the first of November all our kids have been sick with runny nose, cough, sore throat, fever, rash... All but Addison.  Who has shown no signs of illness whatsoever.  God is good

As part of Henry's 6 month check up we had four action items.

1.  Check up with Cardiologist
2.  Followup with Geneticist
3. Audiology evaluation
4.  Check up with ophthalmologist

It seems simple enough but you couldn't guess how hard it has been to schedule these appointments!  Brianna spent 5 1/2 hours on the phone one day and only made two of the appointments.  The audiology and ophthalmology were booked up through May.  The May calendar isn't open yet.  And to make matters worse they informed us those appointments fill up so quickly that you have to call right when the calendar opens in order to schedule for the next six month period.  And they don't know when the calendar will open up.  You just have to call back every day to check.  When we asked about cancellations they said that they don't call a cancellation list.  You have to just call back every day and see if there are any openings.  How stupid is that?  

We have some concerns that Addison may be near sighted by the way he crosses his eyes when he is close to a toy or someone's face.  But we don't feel it is something we need to worry about right away.  We had no concerns about his hearing whatsoever.  We had a recommendation from a friend for an audiologist they worked with nearby.  I called to make an appointment the first week of November.  To be honest I was so completely put off by the secretary's bad attitude that I didn't feel comfortable entrusting Addison to their care, no matter how good the doctor might be.

With the difficulty making appointments we emailed his specialist and asked her if there were other Doctors outside of the Children's Hospital network she could recommend and how much should we stress getting these done on the time table she gave us.  The doctor never emailed back.  Which I thought was very odd because she usually gets back to us within minutes.  Literally, minutes.  

When Addison's physical therapist and service coordinator came for his 6 month evaluation we discussed the difficulty with getting appointments.  They suggested taking Addison to the Infants and Toddlers office for an audiology evaluation.  They usually don't do kids his age but they felt at least we could get a screening and know if there was a problem that needed more immediate attention.  His service coordinator scheduled an appointment for him.

And in the meantime, our doctor from Children's called while we were in Boston last week.  She was very upset because she had indeed emailed back right away.  The email bounced back to her and she never saw it until last Monday.  She had a recommendation for a good pediatric ophthalmologist here in our area but her message said nothing about the audiology.  Since our return from Boston was so close to his already scheduled appointment we decided to go ahead and see the audiologist at Infants and Toddlers.

And yet, in the meantime, last weekend I was playing with Addison and noticed he responded eagerly with laughs, squeals and smiles when he was looking at me, but quite by accident I noticed he made no response at all if he couldn't see me.  This was the very first time I had any questions about his hearing.  

Tuesday morning we went to Infants and Toddlers.  The audiologist is a completely lovely women.  16 years ago I sat in that same room with Brianna and also with Abby.  It was weird being back there now.  Actually, Brianna asked if she could go along for the evaluation because she has only faint memories of her time with Infants and Toddlers.  As is the case with all our services there, we spent more time filling out paper work than actually meeting or testing.
In the sound proof booth Addison responded beautifully to all sounds from the right side but gave no response on his left.  Mary Kay did two further tests.  One to check the function of the hairs in his ears and another to check the sort of "echo" response.  His right ear was perfect on both tests but his left gave no response and flat lined on both.  :(  There was no sign of obstruction like ear wax but she was hopeful that there might be fluid blocking sound.  Which could indicate temporary versus permanent deafness.  Addison laughed out loud when the right ear was tested, but cried as if in pain when the left ear was tested.  

It just so happens, we were already scheduled to go to the pediatrician for an appointment after we left the audiologist.  Mary Kay asked that we have them check for fluid in the ear.  She also recommended coming back at the end of January to retest the left ear.
At the doctor's office, Angela confirmed there is fluid in the left ear but no sign of infection.  She recommends returning in January to see if the fluid has resolved itself and concurs with Mary Kay to return to Infants and Toddlers on that same day to retest the left ear.

After we left the Doctor's office, before we even got home, Allen got a call from Children's Hospital wanting to schedule Addison's audiology evaluation in January.  It seems Addison's geneticist must have gotten in touch with them about the ridiculousness of making an appointment.  How do you like those apples?  

Addison's geneticist and I had some communication about how we should proceed with various audiology appointments now scheduled.  She recommends we bring Addison to Children's Hospital where they will do more in depth testing.  

So what does all this boil down to?  The first concern is that it is common for children with Down Syndrome to suffer hearing loss and even deafness from fluid in the ear.  The fact that he has no signs of infection is very positive.  However, there doesn't need to be infection for hearing loss when there is fluid causing an obstruction.  And at this time, when there is a huge period of language development, any disturbance in hearing can cause greater difficulty in speech development.

We saw with Brianna that her speech suffered severely because of her temporary hearing impairment, due to ongoing ear infections.  She didn't speak until she had surgery at about 18 months.  Literally, the day of her surgery, she began repeating words, and on evaluation a few months later, tested on par with her peers.

However, language and speech development are already likely to be issues for Addison.  If his speech is delayed, it is not expected that he would be able to just catch up as Brianna did.  On the bright side, since Henry does have perfect hearing in the other ear, we don't have to be overly concerned in the short term. 
So today, in the short and sweet, thank God that only one ear is affected.  Thank the Lord that we have a great therapy team who were so wise to work out another situation for testing.  Thank God for the audiologists willingness to see Addison even though he is technically out of her realm at this point.  Pray that the fluid will resolve itself between now and January.  Pray that he will not develop infection.  Pray that in January when we retest, we discover the flat line was caused by the fluid and not by permanent hearing loss in the left ear.    

1 comment :