Covid-19 Encephalitis – Reggie’s Story told by his parents

Reggie was four-years-old when he became poorly with COVID-19 encephalitis. His parents tell his story.

 

Sunday, the 7th of February, 2021, was a day we as a family will never forget as this was the start of something that would change our thought process through life forever.

Our son Reggie, four, started out with a temp of 38 degrees centigrade. We thought it was just another viral infection. The temperature stayed up until the Wednesday, with Reggie not eating or keeping fluids down. He was very lethargic, there was no much movement and a rash on his back.

The doctors thought it was a virus and prescribed amoxicillin. No improvement was made so we took him to the hospital where he was taken straight round to accident and emergency, then up to the children’s unit.

By this time he couldn’t walk or talk and was very unresponsive, so Reggie was put on hourly observations, after lots of shaking and very unsettled night.

By Friday, the consultant sent Reggie for an MRI scan, then a lumbar puncture and an EEG. He came back and said that Reggie had encephalitis.

He was put on a I/V drip for fluids and lots of antibiotics.

Reggie hadn’t spoken a word now for days.

This was heart-breaking for us to see. Our independent little boy was not able to do anything at all and was back to wearing nappies as was so weak

Days went by with no acknowledgement from him as to who we even were, just laying there gazing in to space.

He eventually said: “I need a wee.“ It was music to our ears just hear his voice.

As time passed, Reggie began to gain an appetite, although we still had to feed him every day.

On the 18th of February, we got told he would be moved 30 miles away to John Radcliffe Hospital, Oxford, as their care for encephalitis would be much better for him. It was very daunting for him and us too.

The first day there, the Occupational Therapy team measured him for a special chair to get him up and about for one to three hours a day.

He was very tired most days from doing the smallest of tasks but kept trying to do his best. He was starting to make improvements. These were very small but going well. By this time he had so many Canulas, bloods taken, Covid swabs and the doctors said he had anti-bodies for Covid and it’s more than likely that he had Covid-encephalitis.

Obviously more testing needed to be done but this is the most likely cause.

Every day, we are just willing him to get better and better. His brother and sister miss him so so much. There is still no real talking or huge movement so, although slow progress was being made, the doctors still were not fully happy, so they wanted to give him a two day course of immunoglobulin.

On the 23rd February, it was the first day we were able to give our beautiful baby boy a real bath.

After the two days, it was like he snapped out of this vacantness and started to slightly talk more and more.

It was an absolute miracle! We couldn’t believe it.

From that day, he has come on leaps and bound and started to walk with his Zimmer frame, building his strength back up.

The 5th of March came and he was well enough to be discharged home. Although we were overwhelmed and very frightened as we hardly knew about encephalitis. Thankfully, Encephalitis International has helped so so much with information we didn’t know.

Reggie is now back playing with his brother and sister and we’re heading the right way to get our son back laughing and joking. He still struggles with some day-to-day things and gets very fatigued  and also struggles with his emotions.

We have lost some of our son that we will never get back through this encephalitis journey, but grateful he is still here with us.

It could of been so different if we had left it longer and the doctors and nurses hadn’t worked so hard to get him better. We will keep learning as we go and he will beat all the obstacles in his path however long it takes. He is our little warrior who we all love and so glad he his home smiling with all the family.

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Phil and his brother, John, took on a half Iron Man in support of Encephalitis International in 2022.

For more about their challenge, visit their JustGiving Page or follow John on Instagram.