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April 15th, 2009, 10:04 AM
Join Date: Apr 2009
Posts: 5
Michael was born in 2001. He was a full term 6 lb 14 oz baby. He had apgars of 9 and 9 and passed the newborn hearing screening. He was a perfectly healthy newborn until 6 weeks old when he had his very first ear infection. The next 2 years were miserable. Michael dealt with what I would consider a constant ear infection.

We visited the pediatrition for dozens of ear infections. We asked the pediatrition numerous times for a referral to an ENT, all the while having our fears put down, and made to sound stupid. I was told I was being overly protective. Being told that if I went to see an ENT that my son would just end up with tubes, and that I didn't want that. That tubes were unnecesary and in a few years his eustation tubes would straighten out on their own.

We tried many different antibiotics. We started with amoxicillin and then he had that so much it stoped working. Each ear infection trying a stronger one.

At 18 months a hering test was done and showed a 25 db loss. I was told by the audiologist to see an ENT becuase it was probably due to fluid in the ear. Back to the ped with no luck.

The whole time this was going on my son constantly babbled, smiled and laughed. He was also out of control. Temper tantrums that blew my mind. At about 2, Michael still only had 3 jumbled words.One day his daycare teacher said to me, "Katie, I believe that Michael has a hearing problem. I have worked with HOH kids before and he has many of the signs"

That was the push I needed. Next ear infection I told the pediatrition that I wanted a hearing test. I was desperate and bargained with him. I told him to send us for the hearing test. If there was any loss at all I wanted my referral to ENT, if there was no loss, I would shut up about the tubes and ENT. He agreed. I will never forget the words that man said to me while leaving his office that day. He said "I bet you my medical degree that this kid doesn't have a hearing loss" I just said "we'll see".

Several weeks later we found out that Michael has a Profound hearing loss in one ear and a severe loss in the other (80 dB to be exact) This was determined by ABR, and brainwaves don't lie. This severe of a loss shocked EVERYONE including the audiologist. The soundbooth test done weeks before did not show nearly as great of a loss. He was tricking us, because he had adapted to a silent world.

They call his loss a progressive sensorineural loss because of the 18 month hearing eval being so good. After we got the profound results I called that ped and demanded my referral. The nurse told me I would have to wait until the doc received the documentation from the audiologist and then the doc would decide if it was necesary from there. She told me this could take 6 weeks.

I hung up on her and called the insurance and a new doc. I had my ENT referral in 24 hrs. Tubes were placed a few weeks later. Michael is now 8 and has never had another ear infection after the tubes went in.

He has 2 hearing aids, although he chooses to only wear one on the better ear. He gets no benefit from the other. He goes to speech 4x a week at school and speaks AMAZING for a deaf kid. He was in a classroom for the deaf for pre-k, kindergarten and first grade. He repeared first grade in a mainstream classroom with a sign language interpreter to get a better grasp of reading. He has done awesome and is ready for 2nd grade. We will mainstream him again this year.

We use total communication and are looking into getting him a cochlear implant soon. Back in 2003 they told me ear infections did not cause permanent hearing loss. Even the audiologist said it. Research is begining to show that it can cause permanent loss.

Sorry this got super long, but that's our story
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April 15th, 2009, 11:17 AM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
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Welcome to the board, Katie, and thank you for sharing your story! I am so, so sorry you had such a struggle with Michael's pediatrician about your referral. That seems to happen so often, pediatricians that don't trust the parents and abide by their wishes, and leave losses to go undetected for so long. Ugh! It steams me, it really does. It sounds like Michael is doing wonderfully though, and with just one hearing aid! The TC method is wonderful.

My son is also deaf. He passed his newborn hearing screen with great results, but was in the NICU for a couple months, and they retested him right before he was released to go home. He didn't pass that one. A follow up ABR confirmed a profound sensorineural loss in both ears. He is now 13 months old and has bilateral cochlear implants, activated 2 months ago. Right now, we are focusing on AVT and a strongly oral method, though we hope to also learn sign language together down the road ... or, of course, if he doesn't progress well with the implants.

I hope you stick around and keep posting with us! I would love to hear how Michael's journey continues.

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