Bodhi has persistent glue ear

Before Bodhi was diagnosed with glue ear, I had no idea how severe it could be. A ‘temporary’ problem has impacted our lives for the last five years.

Bodhi has always been a creative, active kid who loves being out and about exploring, but glue ear put a stop to a lot of the things Bo loved.

It was during the first lockdown when I started to notice some delays in Bodhi's speech. I put it down to no longer being able to attend our classes and missing friends and family. However, once he started nursery when he turned three, it was obvious the other children’s speech was a lot more developed. He started to struggle to make friends, and he was getting upset as he couldn’t communicate with the other children or teachers.

We got a referral to audiology through speech and language therapy. His first hearing test showed he had moderate to severe hearing loss. Having to wait three to six months for each hearing test was painful. It was never made clear to us that glue ear was what they were testing for. Once he had three hearing tests all showing glue ear in both ears with different levels of hearing loss on each occasion, it suddenly clicked why Bodhi kept having reoccurring ear infections.

While we waited for an ENT (ear, nose and throat) appointment, Bodhi's ear infections only got worse. There were so many sleepless nights with Bodhi in pain. He actually ended up in A&E a few times as he had temperatures that were uncontrollable, severe headaches and vomiting due to pain. During this time, he started to struggle to go to nursery and would get anxious and overwhelmed.

It was such a relief to eventually see ENT. We had the most amazing consultant who listened to all my concerns and said we had to get Bodhi grommets before he started school.

His first set of grommets were inserted in December 2022. The grommets were pure magic. We had no more ear infections, no pain, and his speech improved so quickly.

A few weeks before Bodhi started school, we noticed a few symptoms start to come back. It was nothing too severe at first, just asking us to repeat ourselves and struggling in noisy environments.

Come winter, it was clear things weren’t OK. His ear infections were back and causing severe pain. He cried everyday about going to school. He no longer wanted to take part in extracurricular activities and came home every day just wanting to go to bed.

His GP told us his grommets were still in his ears and prescribed antibiotics. Eventually we got a referral back to ENT. When they saw him, they told us the grommets were out of his eardrum but stuck in his ear canal. They tried to hoover them out, but they wouldn’t budge. We were given ear drops and put back on the waiting list for his second set of grommets and an adenoid removal.

While we waited for his grommets and spring came, we were hopeful things would improve, but the infections just kept getting worse and more scary each time.

Bodhi had to have a CT scan to make sure the cause of his headaches weren’t more serious. The CT showed Bodhi had a severe sinus infection and ear infection even after weeks of antibiotics. He was prescribed even more antibiotics. Once his consultant heard how difficult things were, he was moved to 'urgent' for his new grommets.

Bodhi got his second set of grommets and adenoid removal in May 2024. When doing the surgery, they had to repair his eardrums as they were perforated. The doctors also said the old grommets were still stuck in the ear canal, so they would have been harvesting bacteria, making it a losing battle.

We’re now in autumn and facing the devastating news that one of the grommets has come out early. It was not a surprise as I knew his symptoms had returned. The time in which both of his grommets were in, he had 10x more energy, his speech and reading improved, and most importantly, he was just so much happier.

We don’t know what the future holds for Bodhi right now. We're waiting for a Teacher of the Deaf to come in to his school and see what we can do to help support him in school.

I don’t know what I would have done without the support of the National Deaf Children's Society. They helped validate everything I was feeling, acknowledging the huge impact glue ear can have and have offered us support and advice every step of the way.

[Glue ear is a common childhood illness, with 8 in 10 children experiencing glue ear before they start school. Most cases of glue ear resolve quickly, but some children develop severe or long-term glue ear which needs more treatment.

If you’re concerned that your child’s wellbeing and development are being affected by glue ear, speak to your GP. Find out more about glue ear.]