By Christina Berry-McIntosh from Margate, Kent – UK
Our daughter Ellen was a happy healthy 12 year old girl who loved to swim competitively and take part in charity runs; she was enjoying secondary school taking part in the school band as well as representing her school at swimming and running events.
On 14 January 2010 Ellen had the first Human Papillomavirus vaccination, Cervarix, and the second one on the 25th of February.
Since those vaccinations our family lives have been turned upside down. Ellen is no longer a healthy confident independent young girl.
Ellen suffered virus after virus along with the following symptoms:
- Acute breathing problems and chest pains-mainly in the lower rib cage area
- Inability to regulate breathing with resultant gasping for air
- Excessive and prolonged coughing making normal breathing difficult
- Shaking hands and ‘claw-like’-stiffening of the fingers
- Joint pains
- Inexplicably cold feet…grey\blue toe coloration
- painful throbbing of feet\toes
- General fatigue. …irrespective of excessive sleep duration
- Full body spasms
- Heart palpitations
- Gait and mobility limitations-increasingly resulting in falls and collisions; navigating stairs has become increasingly difficult and fraught with risk; a general dragging of feet makes walking difficult and crutches are too exhausting for more than short period of use and so, wheelchair use has become a necessity.
During this time, we were constantly taking Ellen to the GP who was treating Ellen for asthma but none of the medications were working.
Jan 2012 Ellen saw several consultants none of whom could not figure out what was going on with our daughter.
16 October 2012 Ellen saw Dr. Newson a consultant pediatrician who diagnosed her with post –viral type syndrome. He referred her for several tests which all came back clear; then to the Royal Brompton for a second opinion.
Ellen saw Dr. Sejal Saglani on the 18th of Jan 2013 and was diagnosed with vocal cord dysfunction. She was then referred for respiratory physiotherapy at the Brompton.
Ellen saw the respiratory physio Amy Olley (who said this was not vocal cord dysfunction but hyperventilation syndrome) on 3 separate occasions. Her breathing did get a lot better but by then Ellen had started to suffer dizziness daily and had a very unsteady gait.
When I took Ellen back to see Dr. Saglani, on the21 June 2013, she decided that Ellen’s respiratory symptoms were significantly better and discharged her back to Dr. Newson. I asked if she could have Ellen checked by a neurologist. She said she could not do that and we would have to ask Dr. Newson for a referral. She sent us home. By now, Ellen could not walk without a cane or crutch.
I made an urgent appointment to see Dr. Newson as our daughter was getting worse by the day. My mother had 4 siblings who I had been brought up to believe all had a type of MS. We were extremely concerned as they all got paralysis in their mid to late teens. They lived in the west of Ireland some fifty odd years ago there are no records to be found.
When I took Ellen on the 25 June 2013 to see Dr. Newson he said “What do you expect me to do now?”
I was totally taken back by his attitude. He reluctantly referred Ellen for a neurology opinion but in that referral he stated that all this may be related to her other symptomatology which had a psychological component.
Because we had to wait for this appointment to come through we took Ellen to see Dr. Chong THROUGH OUR BENENDEN INSURANCE. He said her neurological examination was completely normal and that she should try and help gradually rehabilitate herself back towards normality.
On the 19th of August Ellen went to see Dr. Redmond who arranged Ellen to have a MRI scan which was clear. Based on that, he said he was of the belief that she had a psychologically based functional syndrome. He referred her to the Maudsley Hospital London.
All through the winter months Ellen deteriorated to the point where we had to leave her upstairs most days because she was suffering excruciating rib pain. Getting her up and down the stairs was extremely difficult.
It turns out that the Maudsley hospital do not deal with patients under the age of 18 so after an arrangement between our GP and Dr. Redmond they admitted Ellen to the Treble ward Canterbury hospital for observation with the view that she would be transferred to the Maudsley hospital as it was considered that this would be the best place for Ellen to be. Dr. Redmond never came to see her on the adult ward that he had our 16 year old daughter admitted to but we were told by one of the neurology team that a transfer to the Maudsley would not happen until she turned 18.
On 10 April 2014 we had a meeting with Dr. Davis at National and specialist CAMHS Pediatric liaison team. They told us that Ellen was possibly regressing back to a toddler because she did not want to grow up; or maybe myself and my husband were making her ill because we did not want her to grow up as she was our first born.
My husband asked several times if they were treating anyone with similar symptoms. To that question we never got a straight answer.
Ellen was offered weekly sessions to help her come to terms with her situation. She found these sessions a waste of time after the third one, as they were not doing anything to help her. In fact the sessions were making her feel worse because she was having to drag herself up to London when she was not even fit to have a bath unaided. She was made to feel that she was just attention seeking and was told she should do an online quiz to test herself for Asperger’s because she came across as someone with autistic traits. My husband and I had to see Dr. Davis once a month. These sessions always ended up being quite heated because we were always trying to get them to appreciate that Ellen had physical medical issues going on and they were being left untreated. Because Ellen had been head girl and junior swimming captain they were of the opinion that she had been pushed as a young child and this was why she was having issues. As her parents we were unhappy with this opinion and kept fighting to have Ellen’s case reviewed.
On 15 May 2014 Ellen was rushed to hospital with abdominal pain after a lot of eye rolling and discussions that the pain was probably muscle pain as she had just started physiotherapy on the 13th of May. Finally, they gave in and scanned her and discovered an 8x8cm cyst on her left ovary, which they had to remove. Ellen took a long time to recover from this surgery because she caught an infection.
Ellen began having physiotherapy treatments from David Pearce of the Ektra group (through our GP) and still has an hour treatment every two to three weeks, we top this up with monthly visits to a private sports physio Tim Allardyce from Surrey Physio. Both David and Tim have been fantastic support to Ellen and myself and my husband. They both fought for all of Ellen’s physical symptoms to be taken seriously.
Eventually on the 9th of June Ellen was admitted to King’s college hospital for diagnostic tests and observation. It was while she was in hospital that Dr. Gall diagnosed her with Postural orthostatic tachycardia syndrome (POTS) and wants further investigations into Ehlers-Danlos syndrome (EDS).
This has been a nightmare for us all, most of all Ellen because even after so many years of not knowing what was going on with her body and being made to feel that she was a time waster she has been dealing with the complexity of this condition with great resolve.
As a family we can no longer take part in family days out like we used to going to theme parks and water parks, as this is all too much for Ellen, even going to watch a film has become a challenge.
Every day I regret ever having allowed her to have the HPV vaccine and can’t help wondering how different all our lives could be if we had made a different decision.