hi vicky,i have four children two of which are confirmed waardenburg syndrome type two

lliniwyn

This discussion was created from comments split from: Hi I'm Vicki. I worked as paediatric audiologist with children with complex needs. Ask away!.

lliniwyn

hi vicky,i have four children two of which are confirmed waardenburg syndrome type two.my daughter has only hearing on her right side,and my son has small loss on right and and has lost about half his hearing on left but still hears high pitches.we have been told that there condition is progressive hearing loss only time will tell.but unfortunatley we have been offered nothing to assist them via audiology or in there school.they have a ed officer who visits frequently but the problems we have are endless..teachers talking while faceing white board,my children being told off for not listening,teachers forgetting to inform other staff of there loss e.t.c is it true what e.n.t tell us that this is just the way it is and that they cant aid them.as for my son they said he cant have aids as he still hears high pitches so this would interfere.many thanks x

VickiKirwin

Hi lliniwyn

There is some evidence that people with Waardenburgs type II have progressive hearing loss and may get worse but the evidence is extremely limited so I'm afraid we will have to wait and see. However there is lots that we can do to support your children's hearing now.

There are very few children who will not benefit from a hearing aid - there are lots of different styles available for all types and levels of hearing loss. Modern digital hearing aids can be programmed to very closely match a child's hearing loss so if they are still hearing the high pitches well then the hearing aid will only amplify the lower ones. Also when one ear is better than the other it may help to wear a hearing aid in the poorer ear to help bring some balance back to the hearing - this helps us better work out which direction sounds are coming from and helps us hear speech better when there is background noise.

With or without hearing aids there is other support available in school. If you're not already in contact with a Teacher of the Deaf from the local authority's hearing impairment support service then ask your audiologist or the school's SENCo to refer you to one. It is his/her role to ensure your child's hearing needs are properly met in school - from advising mainstream teachers on improving communication with children with hearing loss and best seating positions to hear the teacher well, to using hearing aids well in the classroom and to help advise you on the options for schools that will best meet your child's needs. There is also equipment that can be used in school (with or without hearing aids) that will help children hear the teacher better known as radio aids and soundfield systems. The Teacher of the Deaf can assess, advise and provide these if needed.

Vicki