My 11-year-old daughter was diagnosed with tinnitus at just eight years old. To mark the British Tinnitus Association’s Tinnitus Week campaign - Kids Talk Tinnitus - I want to share her story.
Amy has had tremendous trouble with her ears from being a small baby. She had repeated ear infections, was diagnosed with glue ear and as she got older it was clear she also had hearing loss.
Amy then started complaining of a buzzing sound in her ear that was getting worse so we mentioned it to her ENT doctor and were told it was tinnitus. Looking back we think she had it for a lot longer as she could get very upset about everyday things. But as it is very difficult for a child to verbalise the sound and its impact we think she didn’t really understand what she was experiencing until it became louder and she was asked the direct question about what she was hearing.
The two different sounds Amy hears can become overwhelming at times. This has impacted on her school life as she has to concentrate so much harder to hear over the sounds. This could easily be mistaken for Amy day dreaming but when she feels that the tinnitus is taking over and she is tired, because she also finds it tough to sleep at night, it is almost impossible for her to carry on as normal.
When Amy’s tinnitus is bad it is impossible to communicate with her, it’s like she goes into her own world, which as a parent, is really upsetting to witness. For this reason, it can also be quite an isolating condition that is a challenge for children who want to socialise and be with their friends.
Amy attended a tinnitus clinic in Edinburgh for two years where they started her on sound therapy. It really helped her and she doesn’t need to use it now as her tinnitus is under control. This is down to Amy’s own perseverance and the responsibility she has taken to cope the best way she can and live her life. She does not want anyone to feel sorry for her.
She has created her own strategies such a tinnitus chart which is full of things she enjoys doing - they are all different ways she has found that help her distract her mind from the noise. We also contacted the BTA last year and they put us in touch with another girl around Amy’s age who has tinnitus. They have kept in touch and that has been really useful for Amy to know she is not alone.
I think in those early days before she was diagnosed I dismissed Amy as I didn’t realise tinnitus could affect younger people. It is a long term condition that can be awful to deal with at times and it impacts the whole family but we are so proud of how Amy has dealt with it and her positive approach and determination to get on with things shines through.
It can only be a good thing that the BTA is making more resources available for parents and schools to access because if we all work together, we can help make lives easier for children with tinnitus.
Tinnitus Week runs from 5-11 February 2018 aiming to get the nation talking about tinnitus and highlight the stories of those living with it, particularly children and young people. For more information please visit the British Tinnitus Association’s website www.tinnitus.org.uk. You can also follow the hashtag #TinnitusWeek on social media. To download the new BTA resources designed for parents and teachers to understand more about tinnitus and to support children with the condition visit: www.tinnitus.org.uk/Pages/Category/tinnitus-in-children