Newly diagnosed 9 month old with moderate/severe hearing loss in both ears

[Anonymous]

Hi, my daughter was just diagnosed with moderate/severe hearing loss in both ears. We are trying to process the gravity of this while also moving forward as quickly as possible to catch up to where we would have been if this were caught early (failed newborn screening but somehow passed an ABR at one month by what I'm convinced is an incompetent tech). If you have experience with this, please share it, including best resources and options and any experience with a later diagnosis. I have looked at the River School and we are trying to get hearing aids ASAP, and in the mean time also comparing aids to cochlear implants. Also, in regards to the River School, so you know if part of the tuition ends up being covered by insurance? I will look into this more next week too, but just wondering if anyone has an experience to share.

My older son is the reason I've been involved in the special needs world for entirely different issues. We just never saw this coming. Thanks.

[Anonymous]

Definitely look into cochlear implants and get an assessment for eligibility. They can implant very early now - by about a year. My best friend's child had moderate / severe hearing loss and with his cochlear implants he does great. He can speak well, manage socially and has never been in any kind of special education program. Most people don't even know he has hearing loss unless they see the implants.

[Anonymous]

This is the youtube channel of a mom whose son was born profoundly deaf. She has documented his progress through videos since he was little. It is kind of neat to start with the oldest videos and work your way up to the present and see him grow up! I think he is 6 now.

http://www.youtube.com/user/TurnOnMyEars/videos

[Anonymous]

Can I ask what jurisdiction you're in? It makes a difference in the River School answer.

[Anonymous]

Op here: For the river school question, we are in Montgomery County.

Also, how hard is it to get an infant to keep hearing aids on? I worry that she will constantly grab at them.

[Anonymous]

http://www.phonak.com/com/b2c/en/products/pediatric_solutions/faq.html

[Anonymous]

Get hearing aids and see how she does.

Pilot caps (Hanna Andersson) are a pretty common solution to help keep the hearing aids in because they don't block or muffle sound.

Keep in mind you don't just want access to sound and speech you want language and you want it ASAP. Start using ASL to fill the gaps.

Both Maryland School for the Deaf and Kendall have early infant programs. MSD's family education program in Frederick is great. It may be a bit far for you, but I did know some families from Montgomery County who took their children there. Both of those are bilingual schools - but many kids (at MSD at least) are also bimodal and use CIs/hearing aids and ASL. They will also do home visits.

Montgomery County's early intervention is good - contact them. They will do also do home visits.

[Anonymous]

My child got bilateral hearing aids at age 4. He has "Safari" by Oticon.

http://www.gearforears.com/

His hearing aids came with this device, it goes over the hearing aids and clips to his shirt. I would not have been able to sleep if I sent him off to preschool without it. At 6, he still wears it. I bought more of them from Ear Gear.

My child sees Dr. Sideris at the the Laurel Lakes Outpatient Center of Children's Hospital. She is very good with children. But if the hearing aids get broken, it takes a long time to get them fixed with CNMC.

So we take them to Auditory Services in Silver Spring, MD
http://www.auditoryservices.com/

This place is hands down the place to service hearing aids.

Montgomery County Infants and Toddlers program will send you a Deaf and Hard of Hearing teacher, as well as a speech therapist when your child is old enough (or maybe now), I don't know.

I don't know where you got the BAER, but I would recommend it be done at Georgetown Hospital. My son sees ENT Dr. Milmoe at Georgetown. We see most other specialists at Children's, but the wait to see an ENT and the ENT staff at Children's is atrocious. Dr. Milmoe is top notch and easy to get an appointment. My son had BAER (under anesthesia both times) at Children's and at Georgetown. We were much happier with the results (more detailed) at Georgetown.

So if you need an additional BAER, I recommend Georgetown, I don't remember the doctor's name, as we set it up with Dr. Milmoe's dept.

Dr. Preciado at Children's is known nationally for coclear implants. He is an excellent doctor, but at the time it was very difficult to get an appointment with him. I met people in the waiting room who had traveled (by bus -- Amish) from St. Mary's County to see this doctor. Someone else traveled from New York.

In the future, there is a school in Montgomery County (Rockville) which many hard of hearing and deaf kids go to school. That is Flower Valley E.S. has the deaf and hard of hearing program and cued speech.

I know nothing about the River school.

Here is a Montgomery County group.
http://groups.yahoo.com/neo/groups/mcahic/info

Have questions, these are the people to ask. My son's Montgomery County DHOH teacher is on the list serve as are other MC school employees.

Hope that helps.

[Anonymous]

To elaborate on the schools in Montgomery County - there are 3 programs.

They stay together for preschool. Then Flower Valley is the school that uses cued speech, Lucy Barnsley is the total communication school, and Rock Creek Valley is the oral school.

I can't speak from personal experience about them. We toured the preschool and decided not to send our child there.

[Anonymous]

Hi OP, we did hearing aids at age 2 and cochlear implant at age 3 due to a progressive loss. I'd also second the recommendation for georgetown if you are looking for a quick ABR. Childrens and Johns Hopkins generally have much longer wait times.

It seems like you are on the right track in attacking things. You'll likely need to have some time using hear aids to evaluate the benefit before a doctor or insurance would move you into a CI. We were very pleased with Johns Hopkins CI center. Our surgeon is no longer with Hopkins, but my understanding is that Dr. Francis is now one of the go-to surgeons in the area.

As far as academic programs, you said you've already toured the River School. I am biased in saying it's a great choice, but I would recommending looking at various options to see what fits you best. I can't imagine medical insurance would cover the tuition, but you could potentially petition MCPS to pay for it. Since MCPS has a program in place, however, that would be an uphill battle. You can however deduct the tuition as a medical expense on your taxes in most cases. But that only yields a fraction of the cost back.

As far as keeping the hearing aids on, it's different with every kid. Even the audiologist thought our daughter wouldn't keep them on, but she did. There's a yahoo group called 'listen up' that you may want to consider signing up for. It's a good resource for questions like that.