A mum has told of her heartbreak after her daughter has been left unable to walk after sustaining a skin infection after using a hot tub.
Poppy Flambert, 12, from Cardiff, caught an infection on her toe from using the spa pool three years previously, and shortly afterwards banged her toe ‘really hard’. Since then, her symptoms got progressively worse and she was left screaming in pain, and is now forced to use a wheelchair.
It’s so bad that she experiences severe daily pain and is only able to attend school part-time.
Poppy’s mum, Georgia Flambert, explained: “It is not 100 per cent as to how it started. She had a skin infection on her toe from using a hot tub. She had some antibiotics to get that better and it started to get a bit better and she wacked her toe with a really hard ball and that really hurt, but it did no damage.
“And from there it didn’t get better. It got more and more painful, we didn’t understand why she was screaming in pain. She could not put her foot down. The doctors did not know what was wrong.”
After a while, Poppy was sent to the hospital for more tests but doctors were flabbergasted. They didn’t know what was causing the pain. Then one consultant suggested it could be complex regional pain syndrome (CRPS), as there was no other explanation for the pain.
According to the NHS, CRPS is poorly-understood and usually affects a person following an injury. It causes severe pain, usually in one limb, but can spread over the body.
It can improve over the time but the skin in the affected area can be very sensitive to touch.
CRPS is the body’s way of reacting abnormally to an injury, and Georgina said that the way it has been explained to her is related to how the brain sends signals to your body when it is hurt. With CRPS, your brain is constantly sending those pain signals, so despite their being no physical injury, your brain thinks it is in pain.
For Poppy, the pain started off in one foot, but at one point spread to her other foot. This meant she had to use a wheelchair as she could not put her feet on the floor because of the amount of pain that it caused. She has missed a lot of school in the last two years and currently attends on a part-time basis.
Georgina explained that since her diagnosis in Easter 2021, lots has happened to Poppy’s condition: “Sometimes the redness would get really bad then look ok. It gets very cold to touch. Even to go outside, if a drizzle of rain touches her foot, she screams in pain.
“After a few months it spread into her other foot. She was in a wheelchair for four to five months. She could not put her foot down at all. That was really hard. That pain started in the morning then by the evening she could not walk. She could not let anything touch her.”
Poppy also got skin lesions (called allodynia) which Georgina explained appeared like friction burns and blisters. To make matters worse, she also experiences joint locking, and has had to wear braces and splints to keep her feet and ankles in place.
Georgina said: “It’s so intense that even a feather touching her is like a knife stabbing her. She described drizzle on her foot as like having sharp pins dropped on her foot.
“Her pain has been so extreme at times that she has said that she would rather have her foot cut off. It is so hard to see her in so much pain and knowing that there is nothing we can do to help her as even pain medication doesn’t help her. Hopefully in the long term, with the help of psychology and physio etc she may potentially be able to achieve remission, but it may be a case of simply learning to be able to live with the pain.
“She managed to get back to walking through sheer determination and a big goal – we were going on holiday with her cousins and she was determined to be able to join in and not be in the wheelchair the whole time, so she really pushed herself in physio and spent a long time trying to tolerate things touching her skin and managed to walk to a point (sometimes with the use of crutches) for the holiday.
“After this, at Easter 2022, she spent four days in the Bath centre for pain services, having intense psychology and physio and they helped us to get her into remission (with just very low background pain) after a couple of months. Unfortunately this didn’t last and around three months later she hit her hand and it locked in a very bent position and it all started again. She says a lot: ‘It’s hard having to pretend to be okay all of the time when I want to scream.”
The only medication that has worked for Poppy involves her flying with her family to Italy. There she receives Scrambler treatment – an IV paracetamol.
Georgina “She was all lit up and happy, we were like this is brilliant, when we came back home after about a week or so then the pain started to come back. However it did do something, her ankle was all locked and that is fixed back to normal now. She was wearing a brace and that is moving again now.”
“It would be amazing if someone in the UK were to offer Scrambler treatment. You can grow out of it, and we really hope Poppy will, but so far that is the only success we have had with managing it.”
