A mum from Bath says she felt like "our world was falling down around us" after her four year old daughter was paralysed with a mystery virus.
Debbie Picken has spoke out about the condition that left Clover unable to feel her legs and feet in May 2017.
She says at first, it seemed like she had the flu but just a week after her symptoms began she began to lose feeling in her legs and feet.
Debbie says: "She had flu-like symptoms for around a week and then didn’t feel any better.
"I ended up getting her seen by the out of hours doctor at the hospital a few days later, as it was a bank holiday, and there was a confirmed case of scarlet fever at her nursery, and she had developed a small rash on her chin.
"The doctor said it was a virus, but not scarlet fever and so we went home with instructions to give her Calpol."That same day but in the evening, I took her back to the hospital as she suddenly developed a cough which wouldn’t even allow her to pause for breath.
"Her vital signs were checked and I was advised to just let the cough run its course, so I took her home at 2am when it eventually stopped," Debbie explained.
Over the next few days, Debbie expected Clover to recover but she continued to suffer from fatigue and spent most of her time asleep on the floor.
After a week Debbie noticed that Clover was falling over more often and had developed a limp, so she took her back to the GP.
From there, they went to the paediatric assessment unit at Bath's Royal United Hospitals (RUH).She was diagnosed with an ear infection, which was thought to be causing Clover's dizziness.
"At that stage, there wasn’t anything tangibly wrong with her that suggested a serious illness," Debbie explained."It was only when we got home and she wasn't in the pushchair or the car seat that she was having to walk again and she told me she couldn’t.
"She was always lying on the floor pretending to be a mermaid, so when she said she 'couldn’t move her legs', I thought she was messing around."But when Clover said she couldn't even walk to the loo, Debbie realised that she wasn't pretending anymore. She immediately rang the hospital for advice."At the back of my mind, I was thinking of an illness a friend had had a few years ago called Guillain-Barré syndrome which causes paralysis and usually is triggered by a virus.
"The doctor I spoke to said Guillain-Barré was unlikely and as she had already settled to bed and still had some movement in her legs she would be ok at home for the night, then I could update them in the morning," Debbie said.Guillain-Barré syndrome is a very rare and serious condition that affects the nerves. It is thought to be caused by a problem with the immune system, the body's natural defence against illness and infection.Normally the immune system attacks any germs that get into the body but in people with Guillain-Barré syndrome, something goes wrong and it mistakenly attacks and damages the nerves.The next day, Clover was taken back to the hospital for tests.
Debbie explained: "They initially thought it was a brain tumour or meningitis, but once they had excluded those possibilities they turned to Guillain-Barré. Because it’s neurological, it’s hard to test for and they sort of diagnose it by ruling out everything else."The descent into paralysis happened over a few days, starting with her feet and moving up her body. She was very irritable and distressed and I just felt like our world was falling down around us."She was just about to stop breathing when they administered the immunoglobulin, which stops the paralysis process. It reached around chest level and gave her weak arms and a weak face, which meant her eyelids drooped."We were finally transferred to Bristol by ambulance two days after her admission, when a bed became available in the neurology unit. When we got there, Clover had an MRI scan and a lumbar puncture."
The MRI showed damage to her nervous system which was consistent with acute motor axonal neuropathy - a type of Guillain-Barré syndrome. Debbie and her partner Chris took it in turns to spend 24 hours at the hospital with Clover."We weren't allowed to leave Clover alone, so we had a two-minute handover outside the hospital every day," Debbie explained.When not on the ward, she spent hours making cushion covers as "down-time" from the family's hectic schedule - a hobby she has now turned into a thriving business.Once the paralysis had stopped travelling up her body, Clover began daily physiotherapy sessions to regain the use of her limbs. This started with short periods of sitting up in bed and trips outside in a special wheelchair."It took about six to eight weeks for her to be able to walk on her own again. But her leg muscles had really atrophied and her knees hyperextended so they would bend backwards when she walked - it wasn’t pleasant to watch.
"It was incredibly hard to use the wheelchair because we had a baby as well. In the end, I just got a double buggy and put Marigold in the back and Clover in the front," Debbie laughed.Eventually, the tot was allowed to return home, but that wasn't plane sailing. The family lived in a four-storey house so, with Clover convalescing upstairs, Debbie and Chris spent all day running up and down with snacks, toys and other essentials.
It was around that time that Debbie herself received a cancer diagnosis.
She said: "It was like being hit by a truck and just as you’re starting to pick yourself up, you’re hit again."I think because of her being ill then, we tried to keep it from her. I knew then that it was treatable with chemo and I've now been given the all-clear."Clover has also made an almost-full recovery. Within a few months of her hospital stay, she was starting school reception, where she managed to walk short distances while keeping her wheelchair on hand."She was able to do most things by herself, but it took a long time before she was able to walk to school. Over the following year, she got better and better," Debbie said.
"Suddenly she was running about, albeit very awkwardly, and cycling and swimming. She is nine now and she does still have some permanent nerve damage to her lower legs and feet."I think she is always going to have some weakness in her feet. They drop and she has to sort of throw them forwards when she’s walking which means they slap quite a lot.
"She also tends to fall over. But she can do everything that is expected of her and the recovery goes on for years after the initial condition."