A morning at Children’s ENT clinic…

I am frustrated.

Following Jordan’s 3rd bout with strep throat in 7 weeks, I began wondering about any correlation between Jordan being tired/fatigued and these illnesses. I also began making a more conscious effort to pay attention to Jordan’s sleeping. He snores, stops breathing, uses 3 pillows at night, and is frequently tired in the morning.

I recalled that at Jordan’s last blood draw he was slightly anemic, so I called the long-term follow-up clinic (neuro-oncology) to inquire about a sleep study. I also mentioned that he’d gotten strep again. This got me an immediate referral to ENT (ear, nose and throat). So, today’s visit with ENT rolls around and what comes of the visit with the attending doctor is that since he doesn’t have his tonsils there is nothing they can do surgically and there best course of action was to write prescriptions for all of the family members to take antibiotics “just in case” any of us had underlying strep and were passing it back and forth – despite the fact that no one is at all symptomatic. I left with 5 prescriptions and concerns about taking antibiotics ‘just in case”. (Turns out “the plan” changed once I called the pediatrician for a second opinion. We’re going to try to boost Jordan’s normal bacteria rather than knocking everyone down.)

However, during the course of the appointment, the resident who did the chatting with me prior to the attending doc coming in asked me if Jordan had ever had any type of amplification system. Oh, an FM system in the classroom? I responded. He asked if there was anything for hearing aid-like that we’d used. WHAT?! In all the times we’ve seen audiology, and any other number of specialists at that hospital, no one has ever given us any suggestion that Jordan’s hearing could be improved. He has a unilateral loss and that’s just kind of the way it is. Well, apparently it’s not.

Jordan is significantly impacted by his inability to hear out of his left ear. He can’t hear us when we sit on his left side, can’t locate sounds to save his life, and the classroom is a nightmare to try to function when different students are called on around the room to talk. And, now, after having the loss for nearly 9 years, we find out that there are at least 2 options that would allow him to “hear” out of his left ear.

While this is super exciting, I also find it incredibly frustrating. I’ve worried about him being hit by a car for years now because he is unable to tell where noises originate from. He can’t find me in a crowded room if I call him. We’ve made accomodations in his seating at school for years. His own sisters know they have to talk to his ‘good ear’ if they want him to hear them. Why? And, how? Why has the Lord allowed this to go on for so long before having this basically useless appointment that yet yielded potentially life-changing words? And, how can a kid be treated in ONE hospital for his whole life, receive all of his audiology appts. there and this never be mentioned? I have grabbed info on hearing aids (cochlear implants and such) when we’ve been in offices because I’ve wondered, but they had to have known. I just don’t get it.

So, at any rate, Willie did find a link to some information about the Baha system which is one of the options that we’ll discuss at our Audiology consult appt. now scheduled for Monday the 6th. From the Maryland Hearing and Balance website:

Baha for Unilateral Deafness

One ear does not provide adequate hearing in many situations. Patients with severe hearing loss on one side, but normal hearing in the other ear have difficulty understanding speech in background noise (such as group conversations and restaurants) and determining which direction sound comes from. Unilateral deafness can result from viral infections, trauma, acoustic neuromas and other ear tumors and ear surgery.

Until recently, the best available approach for providing help in this situation has been the CROS (contralateral routing of offside signal) hearing aid. This technique utilized hearing aid microphones worn in both ears and routed sound from the deaf ear to the hearing ear. Unfortunately, most patients were unsatisfied with this system. Common complaints include the cosmetic appearance and discomfort of the headband, and the use of a hearing aid mold in the good ear. Most patients felt the benefit from the device is not worth the disadvantages.

The Baha, now an FDA cleared solution for unilateral deafness, provides a completely unique benefit. The Baha device is placed on the side of the deaf ear, transfers sound through bone conduction, and stimulates the cochlea of the normal hearing ear. The Baha effectively transmits sounds from the bad side to the normal ear and ultimately results in a sensation of hearing from a deaf ear. Stereo hearing results in improved understanding of speech, especially in background noise and aids in the localization of sound.

The Baha offers significant advantages to the traditional CROS hearing aid. The device is placed behind the ear leaving the canal open. It is worn under the hair and is not perceptible to others. Because it is held in place by a clip and directly integrated with the skull bone, there is no need for a head band and pressure against the skin of the head. In recent clinical trials patients prefer the sound and speech clarity achieved with the Baha verses the CROS and verses the unaided condition.

———————————

I am thankful that something may be possible. What a gift that would be. I’m also thankful that we only have to wait until Monday for the appt.!

Now, to get the sleep study and outstanding feeding eval scheduled…

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4 Comments (+add yours?)

  1. accredomom
    Sep 30, 2008 @ 23:51:28

    WOW! That is fascinating and overwhelming! Praise God for this revelation today and what may come of it. I will pray that this will be something that will work for Jordan and will improve his life tremendously!

    Reply

  2. Eric Woods
    Oct 01, 2008 @ 10:00:12

    Your family must be going through so much, especially you and Willie. It can be so hard to remain positive and true to your faith when you are continually bombared by one challenge after another. Be strong, stick together and don’t stop praying! We are praying not only for Jordan, but also for your entire family, because it affects more than just Jordan. Remember that God uses the small, weak and ordinary to do extraordinary things! Did you notice that through your blog, God has just got the word out to other parents and sufferers that there is another option to accepting hearing loss? Even though we are half way across the country, we are praying for you all!

    Reply

  3. Aubrey Cranson
    Oct 01, 2008 @ 17:23:55

    Yesterday morning I had a strange feeling that you were feeling overwhelmed and felt called to pray for you. I’m sorry you didn’t get good answers about the strep, but I hope something positive will come of the audiology appointment.

    Reply

  4. sbodger
    Oct 01, 2008 @ 17:31:26

    Thanks Aubrey. I really, really needed it yesterday. Am feeling more grounded today, thnkfully.

    Reply

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