ABR Update

Just got off the phone with Eli’s ENT. Basically she confirmed what thought the audiologist suspected- the majority of the hearing loss is likely due to fluid.
It doesn’t help that he has low muscle tone so his ear drums are likely floppy. And they are tiny which could also block some sound.
It could also be *some* nerve damage just due to the fact that he has Down syndrome. :/

ABR’s are typically repeated to get a better idea of the whole picture. So it’s not terrible that he needs to repeat.
If he has nerve damage they will fit him for hearing aides until his ears are large enough for tubes.

She said she was surprised about the left ear being better since she thought the right ear looked physically better at his exam. Which is also a characteristic of fluid. She also said he’s babbling and very vocal- all good signs. She didn’t seem worried overall and said this was a very good plan of treatment.

So we will retest in 3 months and give him his decongestant before the test and see what those results are. If the results are similar it could indicate nerve damage but waiting 3 months won’t change much of anything at this stage.

It made me feel a bit better but I’m definitely anxious. I don’t want to add more to what makes him different and I want to help him so he can hear better.

All in all mild to moderate hearing loss isn’t the worst case scenario but it makes this mama bear puff up.
Please just pray that little man can start sprouting up and that his ears will open up, drain and grow.

Types of hearing loss: and .

ABR

Eli had his ABR today. It was an experience to be sure…we got there first thing at 7am. I had woken Eli up at 3 am for a dream feed because he couldn’t have any food 4 hours prior to testing.
I withheld his medicines because of this. Once we arrived at TCH, the nurse was concerned his stuffiness may affect the testing or that we would have to reschedule all together. To determine how well he was breathing, she hooked him up to a machine that measured the oxygen levels in his body. All his saturation levels were high, sometimes reaching 100 which is the best it can be. This was a huge relief for me because I had been wondering how good his oxygen saturation levels were at night when he sleeps (besides showing some signs of obstructed sleep apnea, his stuffiness can be pretty bad).
So he was able to continue with testing despite his nose.

Eli took the oral sedative just fine and slept fairly well for the test. He woke up twice so the testing had to end sooner than planned but they got the majority of it done.
It wasn’t incredibly difficult to see him all hooked up but it did tug at my heart. I knew he wasn’t in any pain and I knew the sensors weren’t hurting him.20121030-153909.jpgBut he looked so tiny and vulnerable laying in that sterile crib with sensors on his head and body. Poor tiny man!
The part of the test that was incomplete was one level of sound on the right ear and then the diagnostic evaluation- meaning the cause of any hearing loss (fluid on the ears or a processing issues).
When we finished up the audiologist summed it up like this: Eli has mild to moderate hearing loss in his left ear and mild hearing loss in his right ear. His right ear has more of a loss than his left. He has fluid in his ears and stiff eardrums. We should look into getting him fitted for hearing aides and get the second part of the test immediately.

This is when my heart sank. Hearing aides? Really? Before we even have tubes? Will he regain any hearing? Whats the typical range for hearing? Keep seeing cleft palette- is this related to his split uvula? Can we do tubes sooner rather than later? From what you can tell is this primarily caused by fluid? If he would have had his decongestant would that have improved the results?

Lots of questions. So I called his ENT and I’m hoping she can shed some light on the report.
I also called his pedi to discuss the results. I read the results to his PA for some interpretation.

The results:
“Auditory brainstem response audiometry shows well formed and repeatable responses to air conducted click stimuli. For the right ear, the absolute latencies of waves I and III are delayed and wave V is within normal limits. For the left ear, wave I is delayed and waves III and V are within normal limits. All interweave intervals are within normal limits for both ears. Repeatable responses were observed to 50 dBnHL for the right ear and 40 dBnHL for the left ear for the air conducted clicks. Repeatable responses for air conducted tone bursts were observed down to the following intensity levels:
Right ear: 60 dBnHL for 500 Hz, 50 dBnHL for 2000 Hz
Left ear: 60 dBnHL for 500 Hz, 40 dBnHL for 2000 Hz, and 60 dBnHL for 4000 Hz.
Bone conduction testing could not be carried out due to Eli awakening upon placement of the bone oscillator.

Acoustic immutable measures were carried out using 1000 Hz probe tone. The tympanograms are flat for both ears and uncrossed acoustic reflexes are absent, consistent with a significant increase in stiffness for both middle ear mechanisms.

Impression: today’s results predict a moderate hearing loss for the right ear for at least the 500 Hz to 2000 Hz frequency range and a mild to moderate hearing loss for the left ear. The presence of bilateral middle ear disorderindicates that the hearing loss is at least partially conductive for both ears.

Recommendations: reevaluate by an ABR test with anxiolysis to extend today’s findings.”

She said her grandson had similar results for his ABR and later the fluid resolved on its own. But Eli’s small ears may make it impossible for his fluid to resolve on its own.
She explained that to her it sounds like the audiologist believes it to be fluid on the ears and is giving the worst case scenario of hearing aides. She also pointed out that he CAN hear. The report indicated that very clearly.

Your interpretation?

So there was some good news! And once we get an action plan with his ENT along with the remaining ABR testing completed we will have a better idea of what to do next.
It’s hard though, because I want to fix it now. I want his ears to be big enough for tubes and his hearing to be cleared up now. I don’t want him to have any additional struggles. And I don’t want to wait.
He can hear. He vocalizes very well. That’s what I have to remind myself of in the meantime.

The sedative has made him cranky, sleepy and clingy. I’m completely run down from being up at 3 and again at 5:30 and driving all over Houston. -_-
But I’m enjoying snuggling my little man on the couch.
Thanks to everyone for your thoughts and prayers. I will continue to keep you updated. 🙂

Kicking Butt

…Taking Names!

We just got back from our appointment with our new ENT for Eli. She came highly recommended by many friends and we got in quickly.
First thing they did was check to see how his ear drums were functioning. They responded as if they had fluid on them. The audiologist explained that it likely means he has had fluid this whole time due to his small ear canals and congestion. It’s likely he has suffered some hearing loss.
At this point I wanted to cry but just tried to listen to the options instead. We know he can hear and we can work with this situation.
I’m just so thankful I decided to get a second opinion…who knows where we would be if I would have listened to the other doctor and waited another 6 months before coming back in.

Next we saw the ENT. She noted that he has no infections but a very booger-filled little nose. Lol she was very convinced that he has silent reflux. It may be keeping him up at night and irritating his nose causing all this stuffiness and goo we are seeing.
She wants us to try Prevacid and see what happens. Done.

She has ordered a sleep study (awaiting the eval and appointment setup) because she felt it was important and would like to do tubes. She said that even if his ears clear up he is likely to struggle with this his whole life. Since this is such a crucial time for his cognition and language development I want to do what’s best for his hearing.
She doesn’t want to do the tubes herself because Eli has never been put under. Since he is at a greater risk for blood pressure issues and heart issues while under anesthesia, she wants the surgery at Texas Children’s so we don’t find anything out the hard way. Got it.

She also pointed out that his uvula is heart shaped– which is apparently an issue closely related to cleft palette. It could be part of why his nose is stuffy- the split uvula doesn’t keep stuff from going into his nose.
Apparently my youngest brother also has this and has ear issues and tubes in his ears. Should research that a bit more.

All that to say it went wonderfully and I’m pleased with the results.

He had 2 therapy sessions today which were wonderful and has his first private therapy eval on Wednesday.
Busybusy!!!

On the 28th Eli will be 6 months. Can you believe it?! Half a year! We feel so blessed. He’s wonderful and perfect.