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Milo R’s story

2nd November 2023

Jodylee from Huntingdon in Cambridgeshire was sure her son’s tonsillitis was masking something more serious. Her instincts were right, and he was diagnosed with meningitis.

Milo R's case study pic

“I ran into the corridor screaming for help. A nurse came to scoop Milo out of his pushchair and ran off with him.”

“My son Milo was a year old and taking antibiotics for tonsillitis. I was told that he would get better within three or four days. But he seemed to only get worse.

“He had a continuous high temperature. I knew something was very wrong when his eyes rolled back into his head and his back arched. He couldn’t sit up without crying and he had developed a rash on the palms of his hands.

“I booked a GP appointment but they sent us away again, even though he had a rash. Two days later I booked another appointment as I was extremely worried that he was getting worse.


“Milo was then rushed to hospital. I was told he was very poorly and he started treatment for sepsis straight away. The next day the doctors gave Milo an MRI/CT scan & lumbar puncture and it was confirmed to be bacterial meningitis.

“Milo then had two weeks of treatment in hospital but was sent home for the last four days of his treatment to see if he would improve at home. We had to go into the hospital once a day for antibiotics to be administered through his cannula.

“He improved quickly at home and seemed to be on the mend. The doctors were really happy with all his blood tests and they were getting ready to discharge him the next day but Milo took a turn for the worse.

“When waiting for a bus to go to the hospital Milo’s eye were fluttering. As soon as we got on the bus Milo started to have a seizure.


“I got of the bus and ran straight into the hospital. I ran into the corridor screaming for help. A nurse came to scoop Milo out of his pushchair and ran off with him.

"The emergency bell went off and all nurses and doctors ran to help Milo. There were at least 30 nurses and doctors working on him. Milo had stopped breathing, but they got him back. After they had stabilised him I was able to see him.

"He was plugged into loads of machines and had wires all over him and breathing tubes down his mouth. It was the worst thing I’ve ever had to experience.

“The ambulance came to transfer Milo to Addenbrooks hospital as he had to be on the intensive care ward and my local hospital didn’t have the facilities that he needed. Milo was on the intensive care ward for five days. He had multiple MRI/CT scans and it turned out he had masses of infection on the brain and in his spine.

“The hospital didn’t know whether to operate and wanted to see if some new antibiotics would get rid of it. He had EEG, lumbar punctures & MRIs and was transferred to the children’s ward for a week and half.

Infection slowly cleared

“Milo didn’t need an operation as the infection slowly cleared from his brain. After the neurologist team were happy with his progress, we transferred back to our hometown hospital.

“Throughout his stay on Addenbrookes the dietitian and physiotherapist attempted to help Milo with eating, drinking and sitting up because he hadn’t eaten by himself for so long and had been bed bound from the moment he got tonsillitis.

“Milo had PIC line put in his arm as they couldn’t put another cannula in as he was already on three lots of antibiotics a day. Milo spent another eight weeks in hospital having treatment with more MRIs, blood tests and lumbar punctures.

Home leave

“Towards the end of the hospital stay Milo was on home leave (he went home during the day and slept in hospital at night). The district nurses came out daily to give him antibiotics.

“Milo slowly got his mobility back and started to walk. His last MRI before he was discharged showed that the meningitis had cleared but he still had small infection markers on the brain. The doctors didn’t want to continue the antibiotics as he had been on them for months.

“Milo was discharged in the middle of May 2023. He had several hearing tests, consultant appointments and physio appointments which continue to this day.

"Meningitis has affected Milo’s life and will continue to do so as he now has severe behavioural issues, as well as suspected ADHD and will be tested for autism.


“The effect of the traumatic experience of Milo’s seizure on the bus had a massive effect on me. I am now awaiting counselling and I have been prescribed antidepressants for severe anxiety.

“This experience has been very challenging for the family as well as for Milo. Milo was promised an MRI six weeks after discharge to see if the meningitis has cleared but he still hasn’t had it months after being discharged.

“Milo’s progress is improving. He has been amazing at all his hearing tests and all of the other appointments he has to have. He is fully walking now and is overall a healthy little boy.”