I am in need of some guidance... My 4 year old son, Tai has grade 3 unilateral MA.
The doctors we have been consulting give me the feeling they are "winging it".... ...
Tarra M. replied:
Thank you so much for your response. It amazes me how little information I have been given about resources and services. It's been an emotional ride to say the least. I would appreciate any contact information. And many thanks for pointing me to earcommunity.com. I have left a message for the craniofacial clinic at primary children's hospital in salt lake city. I'm hoping the have more answers than questions soon and I'm so grateful I decided to post on the support Microtia and Atresia Support Group, as I feel like I might finally get some help for my son.
Microtia G. replied:
Hi Tarra, welcome to the group! First of all, you are NOT alone!!!! We've got your back! Ok, it sounds like your doctors need a swift kick in the rear - what kind of hearing tests have been done? We had what's called an ABR test done on our daughter (she's 2 now) which was done while she was asleep. Its' a very sensitive test to get the best picture of what kind of hearing loss there might be. It seems like a lot of kiddos with Microtia and Atresia are candidates for Bahas and they can do 'conductive' testing to see if it would be a good fit. An audiologist should also be able to set you up with a trial Baha from any of the companies out there who make them, Cochlear, Oticon, Sophono, Bonebridge, etc..... It sounds like your little guy has a few other issues along with the Microtia/Atresia, I would first start with his pediatrician, send his Dr. to www.EarCommunity.com which is an INCREDIBLE resource that is directly linked and managed side-by-side this support group. The founder of Ear Community, Melissa Tumbin, also created this support group so that other families could educate themselves to best advocate for their families. If you haven't had a chance to poke around that site, I highly recommend it, it'll give you lots of know-how when you go to talk to these doctors. So if it were me, I'd start with a pediatrician, then get referrals to 1. A reputable audiologist that works with kids, 2. A plastic surgeon that SPECIALIZES in ear reconstructions (you're lucky, there is one in SLC named Dr. Grant Fairbanks - you can find his information on the Global List of Surgeons on the Ear Community website), 3. an ENT that works with kids and hopefully knows your plastic surgeon, and 4. I would check into a dentist and see what they have to say about your son's jaw. The dentist can point you in the right direction with that, as will the plastic surgeon. One more thing: because your son has Microtia and Atresia, he has hearing loss on one side. At least. That's what we know, right? Any child, no matter their age, they are eligible for services through the state for services for the Deaf. If you'd like, I can help get you in contact with your state's department for that - our education specialist from Idaho School for the Deaf and Blind actually used to work in Utah so I just need to make a phone call! They can help get your son set up with speech therapy I believe, as well as helping with IEP and 504 plans for school, and making sure he's getting the access he needs for language development. I hope I didn't overwhelm you, I'll get your question posted to the group's main page as well. Good luck, please keep us posted! Feel free to private message me any time =0) ~Heidi, admin and member of Ear Community's Board of Directors
Yeah... I don't know about this pediatrician front desk lady!! Same one I had a prob with before... Asked me if "things were finalized yet" for Wyatt. I was thinking she...
Courtney C. replied:
Dr. James Yeash@New West Physicians. 303-469-6000 beat doctor ever. On 115 th and Sheridan
Hannah R. replied:
I second Dr Shah... She was my pediatrician and is now my kids'... They are good people
Faith W. replied:
Live Indian Crest and when we can't get Dr Shah, the PA Kinsey is great.
Olga L. replied:
I used to love Indiancrest too, Brandon went there, but I think they were really far when I took him. We used to see Dr. Knott... He was soooo cute!!!! (prob still is)
Cynthia W. replied:
Indian Crest Pediatrics. Dr Sona Shah. About 92 nod and Sheridan. I have known her for over 20 years. She rocks!
Stephanie H. replied:
I love Arvada Peds North Office but haven't been in a few months. Which front desk lady shall I glare at for you next week?
Leslie H. replied:
Janie saw Dr. Miller at Cornerstone Peds in Louisville - at Avista. Luckily she was so healthy we hardly ever saw him, but he was just great.
So I was online yesterday ordering Osias' birth certificate and they needed me to upload and send them a pic of my ID and I accidentally sent them a pic of Osias' poopy...