We are 23 months off treatment and while a don’t have hearing aids yet, we may need them.
My son was diagnosed (stage IV, high risk, nmyc amplifed) just before 12 months old and before he had much expressive language. While he is a very verbal child, he definitely has some high frequency hearing loss. He passed his newborn screen, had a normal ABR pre transplant (single BuMel) but kept saying “huh”. Had tubes put in in 9/2015 (at one year off treatment) and a have had your hearing tests since.
The audiologist is hesitant to recommend hearing aids. He has weekly aural habilitation sessions and his therapist says he is doing great and says he doesn’t present like he has a lot of high frequency hearing loss.
With respect to amplification devices, the private audiologist recommends it. The school hearing itinerant, while willing to implement it, points out that in a preK classroom a teacher’s voice is NOT the most important one and that he would still miss out on quiet peer voices.
Throw in his adrenal insufficiency and the meds (hydrocortisone) that he is on to manage the condition, he has fluid in his ears at almost all times as hydrocortisone lowers the immune system. Audiology worries that we could do hearing aides and, should the fluid clear, overamplify him and permanently damage his hearing.
So… best of luck… we are still navigating hearing aides more than three years post diagnosis. As annoying as the follow up feels (at times), I hope we are moving towards focusing on long-term survivor issues rather than dreaded nb.