Our front line chemotherapy involved a fair amount of cisplatin. Unfortunately, as is common with neuroblastoma patients, Shalev lost some high pitch hearing. The audiologist thinks he is going to need a hearing aid, especially for the next few years.
Is there any advice regarding hearing aids, any brands we should prefer? Any tips for life with a hearing aid?
Hi Sam, our son has hearing loss, mostly at high frequencies, from the platinum chemos. He’s worn hearing aids for almost three years now, first getting them at age 4. Regarding which ones, we’ve found it varies widely. We’ve met several other NB kids with hearing aids, and they all seem to have different ones. I think it depends on age and the type/degree of hearing loss. That and technology is always changing. We went with what his audiologist recommended for him (Phonak Cassia microP).
It seems best to start slowly (an hour at a time) for the first week or two, until he gets used to them. Our son decided he liked them right away (not the norm). He wears them pretty close to full time when he’s awake now, especially on school days. The exceptions are when we’re doing water activities or in really noisy environments.
The other thing I’d recommend is advocating for an FM system in school. The teacher wears a microphone and it streams directly into the hearing aids. Helps so much with the background noise.
I will never forget our oncologist telling me that if I had a child with hearing aids, I was one of the lucky ones. That really stuck with me and gave me a good perspective when he did get aids. A sign of surviving, like a battle scar.
Best wishes!
That is so true, in perspective this is a such minor inconvenience.
We are planning on getting the hearing aid sorted once we are done with BMT and recovered. Will keep your tips in mind and start slow.
Thanks!
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.
Hi,
If you have a limited budget you can buy some following PSAPs
Otofonix Personal Sound Amplifier or LifeEar Hearing Amplifier or Britzgo Hearing Amplifier
They are PSAP but work really well like expensive hearing aids