Real life stories

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Real life stories

'It was scary because the doctors just couldn't get his oxygen levels up'

Mum Anna France-Williams shares her experience of the care in Children's Services

DSC 0431 1 2“Whenever he gets a cold, it seems to go straight to his chest and he has trouble breathing. He’s been brought to St Mary’s with similar symptoms twice before, but this was the first time that he’s had to stay overnight,” says Anna, the mother of four-year-old Micah.

Micah was brought into children’s A&E at St Mary’s Hospital with breathing problems related to his suspected asthma. Anna says: “It was scary because the doctors just couldn’t get his oxygen levels up and so they kept him in, and gave him a nebuliser and his medication frequently. He wasn’t talking and was just lying there on the bed, listless.”

After his condition improved, Micah was transferred from children’s A&E to Great Western Ward within children’s services. The next morning he was greeted by Stella, a play volunteer who has been volunteering at St Mary’s for over 20 years. “Stella was so sprightly and enthusiastic. It made such a difference not just to my son, but to me as well. She seemed genuinely interested in Micah and how he was feeling. She took time to find out what Micah enjoyed playing with, and having discovered his love of transport, she carefully laid out the toy cars so they could play together.

“Having Stella there meant I could leave him in the play room for a brief minute or two and have a few moments to myself. I really felt she went above and beyond what she had to. Thankfully Micah is much better now, so fingers crossed he’ll stay that way, but the experience of having a volunteer play with Micah that morning made our overnight visit to the hospital so much more enjoyable and less stressful as a result.”

 

'We feel so lucky that Sam was treated at St Mary's Hospital'

Mum Nicky Sherwood wants to thank St Mary's for her son's quick diagnosis

IMG 9156When Sam Sherwood started involuntarily jerking his head on Christmas Eve 2011, his family could never have imagined what was wrong. Sam, who was just five-years-old at the time, also started experiencing other involuntary movements such as jumping and chest beating, and he became very anxious and fearful.

Sam’s mother was so concerned by his unusual behaviour that she took him to the drop-in GP on Christmas Day and then onto St Mary’s Hospital Paediatric A&E where a rare autoimmune condition called PANDAS was mentioned as a possible cause of this sudden onset of involuntary movements, also known as tics. Over the next 6 weeks Sam’s tics gradually decreased, but 5 months later he developed a fever and sore throat and the tics started up again. A throat swab and blood tests showed an active Streptococcal infection and he was diagnosed with PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) by Paediatric Neurologist Dr Leena Mewasingh. He was put on a course of antibiotics and his symptoms started to resolve almost immediately.

PANDAS is an auto-immune condition where strep antibodies attack the brain instead of attacking the infection, resulting in neurological symptoms such as tics. Other symptoms of PANDAS can include obsessive compulsive disorder, ADHD symptoms, separation anxiety, sleep disturbance, bed wetting, joint pain, problems with motor skills as well as changes in mood and behaviour.

Sam, now eight, previously performed well at school but now his handwriting has deteriorated due to the effect on his motor skills. His mum, Nicky, said: “I often wonder how much Sam has been changed by PANDAS. He was previously a very happy child who was doing well as school, but his behaviour changed overnight and he now needs additional support at school”.

“I would like to raise awareness of this rare condition. Families in the UK are often misdiagnosed because so little is known about it and many doctors haven’t heard of it, including our own. I wish that all GPs knew to do a simple throat swab to test for strep when a child suddenly presents with tics or OCD with no previous history. ”

Since Sam’s diagnosis, Nicky has been diagnosed with breast cancer and has had chemotherapy. She says her own diagnosis has given her a positive outlook on Sam’s condition. “I am thankful that none of Sam’s issues are life-threatening – maybe cancer has helped me see beyond our daily problems,” she said.

The Sherwoods, who live in Twickenham, were staying with family in Queen’s Park for Christmas when Sam’s tics started. They attended A&E at St Mary’s Hospital  and were referred to Paediatric Neurology consultant Leena Mewasingh who has continued to support the family. Sam’s condition is now under control and he is prescribed antibiotics whenever he has an active infection and his tics start up again.

Nicky wants to thank Dr Mewasingh and the team at St Mary’s Hospital – she believes their experience would have been very different without them. “We are so grateful to the staff at St Mary’s Hospital. We feel so lucky to have been staying nearby when Sam’s symptoms started, otherwise we might never have met Dr Mewasingh and got the right diagnosis so quickly. As a result of Dr Mewasingh’s knowledge, Sam has received excellent treatment. I am in touch with other families who weren’t treated at St Mary’s, and our experience has been significantly better,” said the mother-of-two.

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