Amelia was eight years old when she was diagnosed with ADEM, a rare type of autoimmune encephalitis. Mum Kelly shares their experience of brain injury.
Published: October 2019. Date of brain injury: 18 February 2018 (child aged 8 years).
In February 2018 Amelia’s mum, Kelly, noticed her daughter seemed generally unwell and was complaining about a pain in her side. Over the next few days Amelia would visit the GP and A&E as the pain got worse, but diagnosis was difficult.
Amelia was in A&E from early morning on Saturday 17 February in pain. Later that day, Amelia started to give answers in numbers instead of words but it was suggested that Amelia should go home. Kelly pushed for a second opinion.
That afternoon Amelia started to be unresponsive. By evening she had become extra sensitive to noise and was crying out in pain. Further investigations were carried out.
By the next morning Amelia had deteriorated very fast. A reflex test showed that she may be suffering a neurological problem. By 9pm that evening (Sunday 18 February), the MRI confirmed a diagnosis of ADEM (acute disseminated encephalomyelitis). This is a rare type of autoimmune encephalitis that causes inflammation of the brain and spinal cord. Steroids were administered.
Over these days and the following weeks mum Kelly would write a diary.
That evening she wrote: “I feel devastated, crying seems to never stop but I am sleeping with her, and Steve [Amelia’s dad] will stay overnight as well. Steve seems to not be able to process what’s happening at all”.
By Monday 19 February Amelia was unconscious and being fed through a nasal tube. There were episodes of screaming that Kelly thought might have been in reaction to pain. Amelia had become sensitive to touch.
Mum, Kelly, wrote: “I am feeling really sad about what lies ahead but am focusing on the steroids and getting to the end of the process.”
Amelia’s two sisters processed the situation in different ways. Kelly noted: “Our 14-year-old is a rock, quite unbelievable at managing the situation and us. Our five-year-old seems a bit jealous of the attention Amelia is getting.”
On Tuesday 20 February, two days after Amelia’s diagnosis, Kelly wrote: “Amelia is sleeping more and has begun to open her eyes. They are open but there is nothing behind them.”
By that afternoon, when Amelia opened her eyes she pulled her mum to her.
Amelia’s progress was recorded on Wednesday 21 February when Kelly wrote: “In the morning we were able to brush hair and teeth and put on her own nightie.”
After her dose of midday steroids Amelia started to wake for short moments. She recognised voices and responded when her mum called her name. Amelia seemed to react to her friend when she asked her to blink twice. Kelly wrote: “I would summarise the day as good. Steve and I both feel a bit more understanding of where we are.”
On Thursday 22 February Kelly noted that Amelia had slept really well, from 10pm–7am. That day she was sure Amelia had said “I’m not” as a response. Kelly wrote: “She is regularly turning to her name now and appears to want to interact for a few seconds”.
Amelia seemed fully awake. Kelly wrote: “She was just there and I said ‘Is that you, Amelia?’. She said ‘Yes’. I can’t believe it, it’s absolutely amazing!”
Kelly called Steve to tell him to hurry back to the hospital. He made his way around the bed and Kelly said: “Who is this?” and Amelia replied ‘Daddy’.
During the afternoon Amelia started to say ‘yes’ and ‘no’, she counted up to five and read a few words out of a book. Kelly noted: “It’s absolutely astounding how well she is suddenly managing from where the day began.”
Amelia had moments where she would recognise people and times she didn’t. Kelly wrote: “She didn’t recognise Steve at one point, which I know was hard for him, but we have to focus on all the amazing things. He knows to expect confusion.”
Amelia continued to engage more and seemed to have an energy spike about two hours after every dose of steroids. Kelly wrote: “The fog is still there and you can see how hard she works to process information, but it’s coming.”
Amelia still had visible weakness on her right side and was doing everything with her left hand. When she spoke she couldn’t concentrate on walking and vice versa. Amelia had said she was sad a few times, and hadn’t yet smiled, but could say how she felt with single words such as ‘yes’, ‘sad’, ‘mine’ and ‘stop’.
On Friday 23 February, Amelia sat with her sister and watched YouTube videos. Seeing her sister so happy seemed to encourage her and when Kelly asked for a photo of them together Kelly wrote: “Amelia cracked the biggest most heart-melting smile.”
By Saturday 24 February Amelia was putting sentences together but by mid-morning she seemed to deteriorate and complained of a terrible headache.
Kelly realised that whilst visits were a boost for Amelia, they needed to manage them so she wasn’t over stimulated. They ensured that Amelia rested when she started to show signs of fatigue.
That evening, with encouragement from her husband Steve, Kelly returned home for a short while to have a break from being at hospital for eight days in a row. Kelly recorded: “I always said once I feel I can leave her I will spend some time away each day. I know that next week I have to see my other two girls and make things a bit normal.”
Amelia’s speech and recognition were improving but on Sunday 25 February, Kelly wrote: “She is a million times better than a week ago, but in reality she is being fed from a tube and having to wear a nappy and I have to steady myself.”
Amelia asked her mum what was wrong with her and Kelly wrote: “I gave her a basic explanation of the truth, that she has something like fog in her brain and spine that is making things difficult.” Amelia understood that she was getting better though.
Kelly and Steve allowed friends to visit for limited sessions. When Amelia’s sister and cousin dropped in Amelia reacted with excitement and her speech and movement even improved while they were there. Kelly wrote about the visit: “It brightens her mood and responses significantly.”
That Sunday afternoon Kelly, who had popped home, noted an emotional moment when her husband phoned from hospital with an upset Amelia next to him. Kelly wrote: “My eldest (14), who has been holding it all in and handling things very well, melts down. She’s missing her sister and wants to help but can’t. I tell her it’s okay to cry. Then we are all crying.”
Later in hospital with the whole family in the room, Amelia gave everyone hugs and asked for more. Kelly noted: “At this point we aren’t aware it’s part of the condition of her recovery. She will become obsessed with things in the short term.”
On Monday 26 February, Amelia tried Rice Krispies for breakfast. It was the first solid food she had eaten in over a week. Kelly noted: “It’s amazing to see her eating again. Simple things we take for granted become so special in this sort of environment.”
Amelia had developed some fixations. She woke up wanting to hug everyone then only wanted to eat certain foods (mango, chicken) and later only wanted to drink hot chocolate. Kelly was reassured by a hospital psychologist that it was all part of the journey as the brain re-adjusts.
The consultant said how well Amelia was doing and how she might be able to lose the feeding tube soon. If she could become mobile there was a chance she could leave the hospital as soon as Wednesday.
Kelly wrote: “That’s a massive relief but it also fills us with trepidation. We want her home, she wants to be home, but it means we will have to stand on our own two feet. Are we capable parents?”
Amelia had a good night’s sleep and was bubbly when she woke up on Tuesday 27 February. She went to the hospital school but only managed an hour before becoming emotional. Kelly said: “We have to remember she tires very quickly.” She noted how they had to encourage Amelia to sleep during the day.
The next step for the family was to seek support going forward. Kelly wrote: “We have a meeting with a brain injury specialist from The Children’s Trust Brain Injury Community Service (BICS). She will help us with Amelia going back to school – home visits and interacting with the school, setting a timeframe of progress with them etc.” BICS will support Amelia and the family until Amelia is 18, becoming more involved during periods of change such as Amelia moving up to senior school and doing her GCSE’s.
That afternoon things seemed to be getting a bit much for Amelia and she started worrying about everything. Kelly said: “We are wondering how long this will continue for – it’s only been one afternoon but I expect it will continue for a while.”
That evening Amelia’s feeding tube was removed causing her to have an emotional outburst. Kelly wrote: “We continue to see the little behavioural issues – more assertive, even a little rude – she doesn’t have a filter at the moment. What she thinks she says.”
The next day, Wednesday 28 February, the school teacher returned to see if Amelia wanted to go back to the classroom but she didn’t. Kelly wrote: “She was blunt and to the point saying she didn’t like her, or the class, and she only wanted to go to her school. This is a good learning point for us. We can’t force her to do anything she might not want to or that pushes her beyond her current comfort zone.”
Kelly’s thoughts about the speed of Amelia’s progress were: “Remember: slow and steady, there is no need for rapid movements. It’s about Amelia’s wellbeing and if that takes two months or two years longer then so be it”.
Sleep and rest was a big factor in Amelia’s progress. Visits from friends and close family gave Amelia a big boost but Kelly wrote: “I am also aware that I don’t want to over stimulate her so once she shows signs of fatigue, or turns over for a break, we stop the visit.”
That Wednesday, before Amelia could be discharged from hospital she needed a physio assessment so Kelly tried to get Amelia to rest before the assessment at 1.30pm. Amelia seemed to struggle to rest when she wasn’t completely exhausted, looking for things to do. Kelly wrote: “She asks for lullaby music to help calm her – it makes her quiet but she’s still fidgeting around – it’s not proper rest.”
During her stay in hospital Amelia’s bodily functions had slowly returned and there were visible improvements in her speech and mobility. However, the assessment demonstrated she was very weak and would need to use a wheelchair for a while but she walked really well. The physio said that her muscles needed building up as they hadn’t been used for a while.
After the assessment Amelia was told she could leave the hospital. Kelly wrote: “We can go home. It’s amazing news. I know we have a journey ahead of us but I don’t mind at all I am so proud of her.”
Kelly summed up the last couple of weeks in hospital: “This has been the hardest two weeks of my life. I can’t wait to sleep in my own bed although I might have to put Amelia in it as well.”
Home from hospital, BICS went to see the family. Kelly said: “BICS came out to visit Amelia. They had a lot of experience with children after a brain injury, and were familiar with the struggles she was having with communication.”
A BICS therapist went to Amelia’s school to speak to the teachers about how best to manage her return to classes. Kelly said: “Some of the more hidden disabilities such as attention difficulties and moodiness were explained. Making the school aware of how Amelia had changed was important to make the transition back to school as smooth as possible.”
Kelly noted how having BICS at the end of the phone, as a parent, was incredibly supportive. “As Amelia began to recover, it felt as if we’d come to terms and start managing one issue, then another one would emerge. But having someone to support us and offer advice was invaluable,” she said.
Kelly used strategies put in place by BICS to help support Amelia with her emotional outbursts and saw improvements quickly. Kelly said: “Our focus now is to get Amelia back to her pre brain injury self, or as close as we can. Having an ill child really does change your perspective on life and the future.”
It’s now 20 months since Amelia’s acquired brain injury and Amelia enjoys school. She has been diagnosed with ADHD as her ability to focus varies and she can be hyperactive at times. Amelia enjoys art, card games and archery which helps her emotionally, to learn numbers and improve her focus. BICS will next check in with Amelia when she transfers to high school unless Kelly needs support earlier. Find out more about BICS support.
The Children's Trust Community Rehabilitation Service provides specialist goal-orientated neurorehabilitation delivered in the child's environment. Our ultimate goal is to maximise the child's participation in everyday life.
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