Frustrated at lack of understanding of ‘glue ear’
Samantha Leonard’s son Cade suffered a lot with ear infections, colds and sore throats as a baby and Samantha recalls that he failed a hearing test at 9 months old carried out by a health visitor, but this was never followed up.
She admits that she didn’t think anything of it at the time, assuming she would have been contacted if her health visitor was concerned. Samantha recalls that as a baby and toddler Cade was prescribed antibiotics on numerous occasions for ‘ear infections’ which she only learned later may not have helped.
When Cade was two and a half, Samantha was told by his nursery that her son was naughty and disruptive. For some time, Samantha and her husband were getting these reports on a daily basis. Suspicious that her son could have ADHD (Attention Deficit Hyperactivity Disorder), Samantha began to do her own research on the internet – it was then that she realised her son’s ‘behavioural problems’ were more likely to be related to a problem with his ears.
Samantha said: “When the staff at Cade’s nursery began to report that he was being disruptive, we were naturally quite upset. They said that he refused to sit down at circle time for stories and put this down to disobedience. It wasn’t until I began to do a bit of research on the internet about behavioural problems that I realised Cade wasn’t naughty or disobedient. He wasn’t responding to instructions because he couldn’t hear. As a consequence of my own research I took Cade to the GP and requested a referral for a hearing test. “
For Cade and his parents, it was very important for the appointments to be carried out as quickly as possible. Samantha recalls that they had to wait some time. “We had to wait so long for the appointments we became very frustrated. I actually took to calling the hospital everyday chasing the follow up appointment - so much so that I was known by my first name.
Eventually I think they got so annoyed with me that I got a call for an appointment the following day,” recalls Samantha.
The ENT consultant recommended that Cade have grommets fitted during his first year at school and his tonsils and adenoids removed at the same time. Samantha and her husband decided to have Cade treated privately so that the surgery could be carried out during the school holidays. Although the pain in Cade’s ears and problems with his hearing improved after the fitting of the grommets, the relief was short lived. Samantha said: “We noticed the volume of the TV going up again and Cade told us he was suffering with a bubbling feeling in his ears. If Cade is in a noisy environment, then he struggles and will often go and sit in the corner.”
Cade had a second set of grommets fitted just before his sixth birthday. Again Samantha found that the discomfort Cade was experiencing improved for a short while after the surgery but now he is struggling as if he had never received any treatment. A month ago, Cade attended an appointment with the ENT consultant at the hospital and soon has a follow up appointment to discuss the possibility of an operation to fit a T Tube, a form of long-stay grommet. Given that previous treatments seem to have had little or no long-term impact for Cade, Samantha feels frustrated about what the future holds.
“I am not sure what happens now? It’s concerning that two set of grommets and removal of tonsils and adenoids have had no long-term impact. It’s been a frustrating experience right from the outset; having to wait a long time for appointments, a lack of continuity of care and being met with blank expressions when attempting to get answers about what the future holds for Cade,” adds Samantha.
Samantha came across Deafness Research UK when researching her son’s problems on the internet. She feels that there needs to be more awareness about the symptoms of glue ear so that nurseries and schools don’t make damaging remarks and poor diagnosis. Although Cade is now progressing well at school, Samantha suggests that teachers have to persevere to maintain his attention and his confidence has suffered due to his early experience of being labelled as ‘naughty’.
Parents worried about children’s ear infections and not sure where to turn can get up-to-date advice and guidance from Deafness Research UK's new leaflet Ear infections and glue ear in children.
