I have a progressive hearing loss. My audiologist says it is probably genetic since my dad, sister, and grandmother had moderate to severe losses. I recognized I was losing my hearing when I was about 10 years old. It is nerve deafness.

My husband, and one of my sons have both had a terrible time with ear infections when they were little. My husband had tubes. My son came down with multiple infections at the same time, and a couple times had seizures due to high temperatures. Thank God he has outgrown most of them. He is 4 now.

I know a friend who also had many infections when he was a child, and he recently had corrective surgery to remove scar tissue that built up after years of infections. So far his hearing is back to normal.

I don't know if any of my stories have helped or given you suggestions, but I hope they do. Good luck and keep plugging away at it.

My daughter and I both have progressive hearing loss. While mine was a 30 year progression, hers was a rapid progression from moderately severe in both ears upon diagnosis to severe to profound in both in just 3 years. Every time she got tested (every 3 months)there was another drop in some frequency or another. At first the audiologist would say, it's only 10 db, until I pointed out that 10 db every 3 months was a lot in a 12 month period!

As far as I know, there isn't anything that can be done to stem a progressive loss. It is good to rule out LVA (Large Vestibular Aqueduct) or at least know about it to protect against head trauma. Ask your ENT for more information about progressive hearing loss.

Since you already know about the progressive factor, it is important for you to act quickly to get a lot of language and therapy going for your daughter. I was glad to hear that she is excelling at her oral school. Which one does she attend? My daughter is at the Moog Center for Deaf Education where she is doing beautifully.

One tip that I'd like to share with you is that I didn't listen to my daughter's original school (also oral) where they told me NOT to practice lipreading with her. Since I'm hearing impaired myself, I know how valuable lipreading has become to me as my hearing worsened over the years. I talk with my daughter when she is in the bathtub, when she is in bed without her aids and every opportunity I can. She is an expert lipreader now (we started when she was 2, three years ago). It has been VERY helpful to her in many situations - noisy restaurants, her ballet class, swimming, etc. It is much easier to "teach" a child to lipread when they are young.

My husband is also hearing impaired but he can't lipread. His hearing is much better than mine and yet, in many noisy situations, I do better than he does because I can lipread and he can't.

I do understand the philosophy of wanting children to develop and use their residual hearing, but I don't think it should be a reason to prevent them from practicing to lipread.

Please don't dwell too much on the fact that your child's hearing loss is progressive. Some progressive losses stabilize shortly, others don't. The key is to focus on what you can do to help her and to act quickly while she still has as much hearing as she does. Also, be sure to have her tested every 3 months (not 6) so that you are on top of any modifications that might need to be made to her hearing aids and/or her FM system. When children are not hearing as well as they were, they tend to become more quiet and withdrawn and it can also be inherent in their speech which may regress. Some children get very frustrated and act out and are unable to explain why. By getting her hearing tested frequently, you are likely to catch any changes to her hearing before it manifests itself in other ways.

I'm glad you found the HearingExchange forums. We are happy to have you.

Thank you for the kind words about the HearingExchange forums. We are nearing our one year anniversary and I'm so pleased with how it has grown and the many people who visit and use our information.

I'm glad you gave us an update on your daughter's doctors visit. Let us know how things go with the steriods.

I was also glad to hear that your daughter is doing well at DePaul. My daughter attends the Moog School in St. Louis, also an oral school and she too is doing well. It only gets better!

Talk to you soon.

I believe in total communication and so my child has been taught to hear, taught to lip read (which incidentally she taught herself as a coping measure -- that's what the audiologist said first time she was tested), and taught sign. The lip reading and signing reinforces her auditory and verbal language. Paula mentioned how she ignored the advice to NOT lipread. I must agree wholeheartedly with her. Think of how often we hearing adults rely on being able to SEE the speaker and why do we do that because we use minimal lipreading whether we realize it or not.

My youngest daughter has recently been diagnosed with the same disability. We are currently involved with Gallaudet's genetics study. We immediately got her fitted with hearing aids and had her referred to our state's 0-3 program. She will transition into our district's early childhood exceptional educational needs preschool when she is 3.

So I guess my advice to you is to prepare for the worst, know that there is always someone out there who is worse off, understand and teach your child that she can do anything that she sets her mind to (and you have to believe that also), teach her about deaf adults who have excelled, get her a deaf/HOH role model/mentor (my daughter looks up to a deaf young man who has helped her through some difficult self-esteem issues -- he is now a junior in college), and let her explore her hearing abilities. If you can become comfortable with it and teach her to be also to where she can educate others about it, then you have taught your child that she is important and will be somebody and deafness will not stop her.