Second Hearing Test/Muenke Syndrome

[Lisa]

We had Bradley's follow-up visit with the ENT today. So far he is appearing to follow the trend for muenke syndrome patients, and has impairment in his bass tone hearing. We were there for over 3 hours, he has to be completely still for the tests, and you know how long that takes with a 4 month old! He finally fell asleep and they were able to get good readings.
The ENT is not ready to classify it as an impairment yet. He wants to re-test him in 3 months, which may require sedation to get an accurate reading. Worst case scenario, men's voices and very low pitch sounds may just need to be spoken louder to him. Or he may need hearing aids, depending on the severity of it.
My heart continues to break more and more as we find out how much he is being affected by the cranio and the syndrome. I'm just really really emotional right now after they spelled this out to me, and knowing now that there is a good possibililty he has some hearing loss.
Thanks for letting me vent, as usual. :cry

[cheryl2]

Hi Lisa, I know you're emotional right now, but I just want to try to reassure you that hearing losses can be managed. Clara and I are both deaf in our left ears, with normal hearing in our right. We both have Saethre-Chotzen.

I belong to a Yahoo group for parents with hearing loss called Listen-Up. It's very good, and there are parents on the list who have the kind of loss Bradley has. The kind where there is difficulty with bass sounds is called a reverse slope loss.

The ENT probably wants to do a sedated ABR since Bradley is so young to get good readings in a booth test. I don't know how severe his loss it, but I have read that the earlier you get aids, the better. Right now, Bradley isn't talking, but he's absorbing all the language he can hear, so the better he hears, the better is language development will be.

Take care!

[mattricia]

Lisa, i'm so sorry. That must've been really hard. My heart aches for you, knowing that Bradley's may have more complications from his syndrome. We're all here for you and your dear, darling boy.

[Pocket]

You vent away mama! So sorry to hear that Bradley may have some hearing loss. It must be SO SO hard for you. Often these things just take time to sink in, sort of come to terms with - then you can concentrate on all the positive things. Here is a big cyberhug ... all the way from Northern Ireland!!:hugg

[Abby'sMom]

Oh Lisa...I'm so sorry you are going through this. Your post just brought me to tears right along with you. I feel bad whenever I hear about the struggles our craniokids are dealing with but there is just something about your Bradley that has me by the heart. Perhaps its because we joined about the same time and both our babes are bi-coronal... Whatever the reason please know I will be praying hard for him and for you.

"And if one member suffers, all the members suffer with it..." 1 Corinthians 12:26 :sad

Hang in there...Bradley will do great no matter what curves this life throws his way and so will you!

[craniomommynbaby]

The positive side is that Bradley will never know differently. I am legally blind in my right eye since I cannot remember, and I cannot hear higher pitches like sirens until they are up on me. As for the vision, I think I would have problems if I suddenly gained sight in that eye. I would be running into walls with the newfound depth perception! :giggle Even if Bradley needs a hearing aid, they can be very discreet nowadays.

[Amy K]

Lisa, big, big hugs!! :hugg

[Christina's_Mommy]

I agree with Cindy about the hearing aids. I have one in my left ear and need one in the right but can't afford it. Nobody notices the one I have and if they do, nobody has said anything. I have a behind the ear one also. My mother had them also by the time she was 40.
Lisa, I understand about Bradley. Christina hasn't been reffered to an ENT yet but I fear the day that comes. Keep us updated with Bradley!!