I just got back from the ENT with my son. They are showing fluid in the ears, but the doctor doesn’t see anything. They are also showing an additional hearing loss, but don’t know the extent of that. He has to have an ABR for an exact reading of what his hearing is. He also needs a CT (is that right? a CAT scan?) to see if there is fluid in there that the doctor can’t see, or if there is something else going on.
My son has to be put asleep for the testing to be done. This will have to be done either at Chapel Hill or Duke. Both will have a huge waiting list. They will call me next week with the appointment details.
I am so scared. The doctor wanted to put him on an antibiotic, but I talked her out of it. Antibiotics aren’t helping. He’s constantly on them, and there’s no affect. I think they are doing more harm than good.
I have noticed that my son is turning the volume up on things. I’ve noticed that he isn’t hearing us talking in other rooms like he used to. There was a time when we couldn’t have a conversation anywhere in the house. He would always hear us. Now he doesn’t. I’m worried that he is slowly losing his hearing, and there might be a terrible reason why. I’m also worried that there isn’t, and that there is fluid in the ear. If so, it could be a chronic condition, and nothing is working to fix it. If so, he will continue to have hearing loss until one day, he doesn’t hear.
I don’t know what to do. I’m trying to not think of the worse case scenario, but it’s not easy. The longer we will have to wait to get the testing done, the worse it will be. I want answers now. I hate the waiting. I hate not knowing. I hate that my son is going through this.
If you’re noticing your son showing signs of hearing impairment, you’re doing the best thing you can do by going forward with additional testing. *HUGS*
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Wow, I’m so sorry to hear the difficulties he is having with his ears. I hope they find a solution for him soon so that you can all feel better
Hi Tammy, I’m sorry to hear that your son is having hearing issues. You’re doing all of the right things, testing etc.
I lost most of my hearing aged 2-3 to a series of out-of-control ear infections. I always used to put my social difficulties down to hearing loss until I discovered Aspergers Syndrome.
Now I recognize my hearing loss as something good. It has protected me from the over-stimulation of sound. It’s one of the things that makes more able to tolerate difficult environments than my peers with Asperger’s syndrome.
I know this probably doesn’t make things better but I thought you might like to know that there are some things which are beneficial.
Gavin Bollard recently posted..The Olympics and Genetics and Aspergers Syndrome
Thanks, Gavin. It does help to hear that from you. I love when you leave me advice, reminding me how it is from my son’s point of view. The first time my son had ABR, and it noted a hearing loss in his right ear, we opted out of hearing aides because the hearing loss actually made my son’s environment more tolerable. When he was a baby, he would scream and cry when there was a lot of noise around him. He was scared of toys that made sounds. After his hearing loss, he started to enjoy toys with noise, and tolerate noise. I took a “mommy” day yesterday, and left the kids with my husband. I went to visit my dad, and he calmed me down. He reminded me that I shouldn’t worry about this until I had answers and knew what I worrying about. My husband told me the same thing, but I was stretched to my limit with stress from the long summer and money issues. I needed a different perspective, and my dad was able to give me that. My husband also reminded me that we could handle anything, together. Our son would be fine, no matter what, because we would make sure he was. He doesn’t have a complete hearing loss, we know that. If the problem isn’t fluid in the ears, but another issue, we can deal with that. Together, my husband and I are strong. I let myself reach my breaking point emotionally, and I know better than that. I need to start taking “mommy” time before I reach overload.
My son, who had no history of chronic ear infections, was diagnosed with fluid in his ears at age three. The fluid subsequently drained during a surgical procedure. However, even after that drainage, we suspected hearing loss and took him to an audiologist for testing. He was diagnosed with central auditory processing disorder and was found to be profoundly impacted, particularly when he is in environments with background noise. Even a fan whirring in an adjacent room can have a profound effect on his hearing. I would suggest you look into getting him tested for CAPD. I believe it is relatively common among kiddos with ASD
Thanks, Mara. Is that something his regular ENT can test him for in the office?
I’m so sorry! I am sending you big hugs and praying for your son!
Jenn @therebelchick recently posted..5 Things I Learned at BlogHer in NYC
Sending virtual hugs and prayers.
Virginia from That Bald Chick recently posted..Soft Surroundings Outlet Review
Praying that you get answers and solutions very soon! I am so sorry that you are going through this!
Emily @FamilyNLifeLV recently posted..$100 Amazon Gift Card Giveaway #2 | Facebook Blast
Thanks Emily. Trying not to worry about it. Whatever the outcome of the tests, we’ll deal with it.
I am so sorry you are dealing with all of this too — all of the unknowns.
Big hugs and prayers.
Rachel @ Following In My Shoes recently posted..Hello, Houston. Time to Plan for a New School Year.
Thanks Rachel.
Hi Tammy, usually an audiologist does the testing. I am not sure what part of the country you are in, but there is a very good one in Orange County, CA. I would ask your ENT to see if he/she has any recommendations of audiologists in your area. Best of luck to you. Happy to answer any more questions you may have
Thanks Mara. I’ll talk with my son’s ENT.
Sending warm thoughts and wishes your way. Waiting… especially for anything medical… is a horrible feeling. When it’s for your children? The WORST feeling. =/
MomStart (Ashley) recently posted..Photography: The Longest Line in New York
Poor thing
You are such an amazing mama!
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