Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care,...
-
Upload
paige-hutchinson -
Category
Documents
-
view
213 -
download
0
Transcript of Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care,...
![Page 1: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/1.jpg)
Late-Onset DiagnosisA Mother's Experience
Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn
Taunya Paxton, MotherPleasant Grove, Utah
![Page 2: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/2.jpg)
Obligatory Faculty Disclosure Information
In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or
provider(s) of the service(s) that will be discussed in my presentation.
This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.
![Page 3: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/3.jpg)
Overview
● My son's Story● Potential for Improvement● Proposals
![Page 4: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/4.jpg)
My Son's Story
● Triggers ● Chance diagnosed at almost 3 yrs● Best guess deaf since ~13 months● All professionals involved were surprised
– ENT: « He's just a late talker »– Had some language – about 10 intelligible words– Babbled a lot, like what you'd expect from a younger
child
![Page 5: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/5.jpg)
![Page 6: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/6.jpg)
At the Diagnosis (ABR):
● Audiologist gives diagnosis and summarizes options.
● I asked lots of questions, but it wasn't clear who should have the answers.– Audiologist? ENT? PCP?
![Page 7: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/7.jpg)
After the Diagnosis:(Un)Coordinated Care
● PIP: We don't want to help – he's almost 3● ENT: We got the impression of “Now that he's
been diagnosed as deaf, I'm out of the picture.”● Audiologist: Did what was in his scope to do.● Nobody explained what a hearing-aid-dispenser
was: Is it like a Coke machine? Can I buy that at WalMart?
● PCP: Assumed ENT was taking ownership, and therefore did little as far as Chance's deafness.
![Page 8: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/8.jpg)
![Page 9: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/9.jpg)
After the Diagnosis:How we got help
● Audiologist: 'Choices in Deafness', genetic testing, approachable
● Found out about deaf pre-school (USDB) through AGBell parent representative (internet search)– We self-referred to USDB – no doctor mentioned them– Otherwise would have gone to common disabilities preschool
– with Down's, Autistic, etc
● Once we were self-referred to USDB, they were incredibly helpful (loaner aids, etc)
● Local school didn't want to help.
![Page 10: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/10.jpg)
The Money Pit
● Doctors: Are you on Medicaid? No? Oh, I'm sorry! Good luck
● Insurance calls deafness 'cosmetic' and 'an education issue'
● Took out loan for hearing aids● So much discrepancy in price of hearing aids● Black Market of information
![Page 11: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/11.jpg)
Potential For Improvement
● Information packet from audiologist at time of diagnosis: – Where am I going and how do I get there?
● Before age 3, PIP is the “Gatekeeper”. ● Confusion about who should be the
“GateKeeper” after age 3.● Chance's world went silent; the diagnosis just
sent us on a free trip to Pluto.– Professionals deal with this everyday. For parents, this is our
very first exposure to it. “We're not in Kansas anymore, Toto!”
![Page 12: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/12.jpg)
Proposals: Information Packet Contents
● Options in deafness: sign vs oral vs cued vs mix● Refer to State School for the Deaf● List of support groups – different lists for
different approaches (oral vs sign)● List and role of all players: Audiologist, ENT,
PCP, Hearing-Aid Dispenser, etc.● “Yellow Brick Road” list● What impact does this have on sibling care
– ie, should siblings be tested more frequently, etc., and by whom (PCP or audiologist?)
![Page 13: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/13.jpg)
Proposals:Annual Hearing Test
● Annual Hearing Test until age 4 or 5?● $45 and 30 seconds once a year (according to a
couple of audiologists)● many hospitals provide this test free of charge
one day a month● Every day of undiagnosed deafness affects the
ability of these children to learn
![Page 14: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/14.jpg)
So Where Are We Now?
● Chance is doing great● In special oral-deaf school● Parents are active in his education, USDB issues,
AGBell● Failed in getting insurance to cover hearing aids● Parents in race against time to get cochlear
implant so Chance can access higher frequencies
![Page 15: Late-Onset Diagnosis A Mother's Experience Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn.](https://reader036.fdocuments.in/reader036/viewer/2022082805/5514d25955034640138b6130/html5/thumbnails/15.jpg)
Questions?