Post Cervarix Syndrome: Eleanor – Kettering, Northamptonshire, UK

Story as told by Lisa, Eleanor’s mum

Eleanor was born a very healthy baby who never really had any major illnesses. When she was 7 months old, she had penicillin for the first time and had an extreme reaction in which she turned blue and stopped breathing.  She has never had penicillin since.   From then on she was always well – a healthy happy young child.  She was an extrovert who had many friends, did gymnastics and won a couple of silver medals in competitions.    She attended cubs and then went on to scouts where she went camping and enjoyed many outdoor activities.  She joinedSt John’scadets and swam forKetteringswimming club.  Her sisters were always jealous of how Eleanor could strike up a conversation and make friends wherever she went due to her bubbly personality.  She would be out most weekends at sleep-overs, going to endless birthday parties or joining in activities with the scouts or St Johns cadets.

Eleanor had her first hospital stay in October 2008, a few days after her first HPV jab.  She had constant pain in her stomach since the injection. When I saw the GP he thought it might be her appendix.  She was in the hospital for a few days for tests but they couldn’t find anything wrong with her.  They said, “She must be a little constipated. It couldn’t be the injection – just a coincidence.”

She came home from hospital and had her second jab in the November.  Over the next few months, she visited the GP on a number of occasions due to still being in pain with her stomach.  They tried tablets for IBS which didn’t work; different tablets for her periods which never completely eased the pain but regulated her cycle.   During this time she went for a check up with her dentist who found that her teeth had started to corrode due to acid reflux.  She had to sleep propped up and take antacids to help with this problem.

After the May 2009 injection she complained how painful the jab had been. We continued to see the GP regarding Ellie having pain when she ate and stomach swelling/bloating after food, making her feel very uncomfortable.

Over this year Ellie was not able to take part in as many activities. She was now only going to scouts as she just felt too tired to do anything else.  She didn’t go out as much but was still managing to attend school, although it was tiring.

In May of 2009, Eleanor had a blood test which showed something wrong with her blood count and I was asked to take her back into the doctors.  The GP who saw her dismissed it saying it just proves she has IBS.  She then saw a different doctor who I requested to take Eleanor on as his patient. Unlike others she had seen, he always believed her, made her feel that her illness wasn’t in her head, and referred her to a consultant at the hospital when needed.

In September 2009, before she got to see the consultant Eleanor fell ill and was unable to keep any food or water down. She went to Key doc (after hours medical service) a couple of times that week due to the pain.  On the second visit to the hospital, she was seen by a nurse practitioner who did not appear to be happy that Eleanor was back.  When the nurse examined her stomach and liver, she was concerned and called for the doctor who admitted her to hospital.   Whilst in the room, the nurse phoned the ward and told them the doctor wanted Ellie to be admitted, but she personally didn’t think she should be as her vital signs where good.  Since I insisted, she was finding out if there was a bed available.

Eleanor stayed in hospital for a week and was put on a drip to alleviate dehydration and give her stomach a rest.  Whilst in hospital she had an ultra sound which showed a cyst on her liver and a blood test that identified something wrong with her pancreas.  The doctors were unsure, but suspected Eleanor had an ulcer. She was referred to another hospital in Leicester to see Mr Green, a specialist.   She was put on a high dose of ranitidine and omeprazole and had to drink lots of milk and eat ice cream.    She had to give a faeces sample to be analysed to see if she had the bacteria in her stomach which causes ulcers.

She saw Mr Green the following week. He said that Kettering had lost the sample so he couldn’t say if she had an ulcer or not. He thought we should wait and see how things developed over the next 6 weeks. If Eleanor was not better, then they would investigate further.

Eleanor got a lot worse over the next couple of weeks and was re-admitted into hospital by her GP as she was still continually being sick and had to carry a sick bowl where ever she went.   She was told to start the ulcer medication even although they had not proved this was the cause of Eleanor’s problems. Since she was not able to take penicillin she couldn’t take anything until the next day when they worked out which tablets she could have – the treatment consisted of 3 different types of antibiotics.  When she took the first dose she doubled over in pain screaming, was rushed to A and E and re-admitted onto the children’s ward.  This was in October of 2009.  They tried different methods of giving her medication, but every time the pain increased. But it was their theory that she had to complete the course.

The hospital staff put her back onto a drip and started giving her ranitidine intravenously, trying different medications to relieve the sickness.   None of them worked and she remained in hospital for 5 weeks continually being sick every time she ate or drank.  One of the doctors asked her if she was making herself sick – was she worried about getting fat?

She didn’t want me to leave her side as she felt the doctors didn’t believe her. One of the nurses took the sick bowl off her and told her it was in her mind and she was to swallow her vomit!  Thankfully not all the doctors or nurses were like that. Some were very good with Eleanor, although when she complained about the pain they were reluctant to give her medication and always asked her if she was really sure she needed it.

After 5 weeks, she started throwing up fresh blood and granules. She saw Mr Chilton on the ward who is an adult gastroenterologist.  He said that it was possible that the HPV jab could have caused her problems but he wanted to rule out other potential sources. He said she needed to stop taking all medication. Then, he would take biopsies from her stomach and bowel to rule out Crohn’s disease.

She had another couple of tests in Kettering, including an ultra sound showing the cyst on her liver was gone.  She had an appointment the following week as an outpatient at Leicester, Mr Green’s clinic. I was advised by the doctors on the ward to continue and see him. She was discharged so that she could attend.  As she was throwing up blood all the way there Mr Green had her admitted.  She was in hospital for over a week having an endoscopy and a pH level test done.  They found her stomach was inflamed, but attributed it to her vomiting. Her ph was also high but again they said it was a consequence of her being sick.  She was discharged and sent back toKetteringcare.  Mr Chilton, after learning that Mr Green was involved with her care, discharged her as she was still a minor and therefore should stay with Mr Green.

By this time, Eleanor had only been able to attend regular school 10.9% of the time. She was receiving no education from the hospital teacher when she in the hospital.  I constantly asked for Hospital and Outreach but the school never sorted it out.  She became distant from her friends and very isolated. She felt frustrated and depressed as she thought no one believed her.

She was re-admitted to hospital in January 2010 for pain and sickness through A and E. The doctors in hospital decided to refer her to Mr Woods, a gynaecologist, who suspected endometriosis.   She had a laparoscopy in May 2010 which showed everything to be normal.  At this point, because they had not found anything, Eleanor became more withdrawn and very down as she felt no one believed her.  She saw Dr Achayria in June. He decided the only other thing Eleanor could have was abdominal migraines and cyclonic vomiting. He put her on medication to stop the symptoms, saying she would grow out of it.

Eleanor’s pain continued and she still struggled to attend school. She was absent more than she was there but would still study when she felt up to it at home.  By the November, Eleanor’s pain was getting worse and she was having bouts of diarrhoea and sickness. Her stomach was continually swelling up and giving her really bad stretch marks.  This really got her down and she was referred to a specialist registrar in Child and Adolescent mental health as the doctors at the hospital felt a lot of the pain she was having was in her head.

Dr Singh felt that there were no mental issues with Eleanor and referred her back to the hospital for more investigations.  Her consultant, Dr Achayria, then referred her back to the adult gastroenterologist, Dr Azam who she saw in December of 2010.

In February she was sent home from school due to what they thought was a panic attack.  Eleanor nearly passed out due to the pain she was in.  She went to the GP who said it was a mechanism that the body shuts down when the pain get so bad. When she felt this coming on she was to sit down. He increased her painkillers.  The following day Eleanor was not feeling good and I phoned key doc after dropping my other daughter off at work.

When I got home I found Eleanor passed out on the bathroom floor.  When she recovered she started passing fresh blood from her bowel.  I took her straight up to key doc and was seen by a nurse who did not know what to do but as Eleanor’s blood pressure was low suggested that I take her to A & E.  She sat for 3 hours in the waiting room in severe pain before being seen by a doctor.  This doctor was just wonderful with Eleanor. He got her admitted straight away and gave her morphine for the pain.  She stayed in for the weekend on a drip and painkillers.

Again we had a problem with one nurse who refused to give her painkillers as she did not consider Eleanor was in much pain because she was not crying!  I had to ask the doctors for painkillers so the nurse had to give them to her. The following day she was given a colonoscopy and was diagnosed with Ulcerative Colitis.  The nurse who previously had been reluctant to give her medication became very helpful. Her attitude changed towards Eleanor.

Eleanor has been undergoing counselling to help her come to terms with this long term chronic disease.  She has changed dramatically from the bubbly, happy, extrovert to a shell of her former self.  She struggles to attend school and only is in contact with two other people outside of school.   Her social circle has been reduced dramatically. She feels some people appear to pity her making her even more self conscious.  Eleanor spends most of her time on her own. She hates going out and meeting people unless she feels she is in a safe environment. She will go occasionally with her sisters, who will drive her to different places, but they know when Eleanor is tired and they can cater to her needs without making her feel she is ‘different.’

This all happened to my once healthy girl after being given Cervarix, the HPV vaccine.