New to Enlarged Vestibular Aqueducts

[Anonymous]

Anyone has personal experience? How are your children doing now?

Our 2 year old got diagnosed recently, bilaterally. While having unilateral mostly conductive hearing loss (moderate severe).

[Anonymous]

My DC is now 7, is deaf, with enlarged vestibular aqueducts.

All going fine, so far. Balance has been good, DC is reasonably coordinated, and we don’t see an impact.

All that being said, we haven’t an appointment with the ENT to follow up on this, and see how it might impact DC’s swimming and rollercoasters - apparently those activities can cause some significant disorientation for kids with EVA, so following up on that in the coming weeks.

FWIW, DC has been really really reluctant to submerge their head when swimming, bathing, or showering (long past the age of my other kids). If they are having disorientation, that would help explain it…and make me feel like less of a parenting fail on the swimming.

[Anonymous]

If you have Facebook, there are a couple of groups for parents of kids with hearing loss/parents of kids who wear hearing aids. EVA comes up fairly often in those groups and people are friendly if you ask questions. My child has hearing loss, but not due to EVA.

[Anonymous]

OP here, thank you both!

We are meeting with ENT in November, and I hope they can help answer a lot of questions, including going back to swimming lessons, and starting gymnastics. And flying in the future. My understanding is being careful around atmosphere changes. But commercial planes depressurize so I think that should be okay.

I joined the fb groups too. Thank you!