Tuesday, February 19, 2013

Post-Cervarix Syndrome: Lucy from the UK : By Steve Hinks

Our daughter, Lucy, contracted measles the week after her MMR vaccination. The following weekend she was admitted to a hospital isolation ward with suspected meningitis. A few weeks later, she developed an enlarged lymph node in her neck which persisted until it was surgically removed. So, when she brought a consent form for HPV vaccination home from school, her mother and I were reluctant to grant permission for her to take the series of three shots.

However, the school nurse assured my wife that Cervarix was quite safe - nothing like the MMR vaccine Lucy had such a bad experience with previously. She stressed that this vaccine would protect our 13-year-old daughter from cervical cancer. What parent could resist an opportunity to provide such a safety net for their daughter?

Putting aside our prior negative experience, we decided to grant consent for Lucy to receive her HPV vaccination series. We had no idea how much this decision would impact our lives.

Before receiving Cervarix, Lucy was the normal, healthy young woman pictured on the left. She had an excellent attendance record at school and was among the top students in her class.

We had to take her to the doctor a couple of times after her first and second injection of Cervarix. She was feeling tired and exhibiting flu-like symptoms. It was unusual for Lucy, but no one thought it was anything to be too concerned about.

On the 4th of May 2011, Lucy received her third and final injection of Cervarix. Shortly after, she called her mother to pick her up from school and bring her home. Lucy said she felt like she had the flu and was exhausted. Nevertheless, she pushed herself to go to school the next day since it was exam time. Her mother and I had no idea at the time that this was the beginning of the end of our normal life.

Lucy’s health began to deteriorate rapidly. She started having persistent migraines, unexplained fatigue, joint and muscle pain, unusual bruising, abdominal pain, memory loss, and poor circulation. She lost her appetite and began to lose weight. She constantly felt cold. We took her to the hospital several times, including two admissions.

No one could identify the cause of our daughter’s mysterious symptoms. The only clue we had was Lucy’s first pediatric consultant wrote a note to her GP stating:

“It is quite possible that this will turn out to be a reaction to the HPV vaccine.”

On the 4th of July, Lucy collapsed with exhaustion and had to be taken to the doctor again. By this time, she had already lost a stone (14 pounds). Her chronic fatigue became uncontrollable. Lucy began to sleep 23 hours out of every day. We could rouse her enough to get some soft food down or some Fiji water but that was all. I can’t count the number of times her mother has gotten up in the middle of the night just to make sure Lucy was still breathing.

By September, Lucy slipped into a coma-like sleep. For the next 13 weeks she could not speak and never opened her eyes. We found ourselves living a parent’s worst nightmare.

Lucy’s new pediatric consultant believed she had extreme-severe CFS/ME. The standard NHS treatment for this condition is graduated exercise therapy (GET) and cognitive behavior therapy, neither of which could be done while Lucy was sleeping.

Just before Christmas 2011, Lucy was visited by the Vice Principal of the largest homeopathy college in the UK who promised to try and make her better. Lucy woke up the next day. It seemed like a miracle – a real-life Prince Charming waking our Sleeping Beauty.

Under this homeopath’s care, Lucy improved incredibly. She became able to feed herself for the first time in months. She can watch television or surf the web for short periods of time. After so many months of watching her live in another world, this seems like a miracle to her mother and me.

We know we are not out of the woods, but at least now there is hope she will continue to improve. Lucy’s weight loss is still a major concern. She struggles to regain what she has lost. We have watched our 13-year old daughter change from the girl in the photo at the beginning of this article, to the one you see in the photo on the right.

She continued to sleep much more than normal – at least four naps per day. Lucy’s pediatric consultant has told her GP that her condition is “not ME, but a reaction to the injection.”

Believe it, or not, this is not the extent of the changes to all of our lives after HPV vaccination.

During the early months of 2012, Lucy was required to visit a psychiatric consultant every week. When this was not found to be helpful, her counselors wanted to have Lucy admitted to a secure psychiatric unit for a 3-6 month assessment. When we all visited the proposed facility, the senior psychiatric consultant told us that this was not the appropriate place for Lucy. Needless to say, we wholeheartedly agreed.

Lucy continued to improve so much that we began to plan for a family holiday in June. We checked with Lucy’s Nurse, GP and a private medical consultant, who all agreed that she was fit to travel and that it would probably do her some good. Everyone agreed, except for her psychiatric consultant. Just hours prior to our departure, they referred our family to Social Services and the police. Fortunately, we did obtain permission to take our much needed holiday, even though our departure was delayed by several hours causing all of us considerable stress.

Upon our return, no less than three different Social Workers investigated, made their assessments and informed us in writing that there was no need for Social Services to be involved. The letter arrived in September.

Despite this, just prior to Christmas, we learned that the original investigation which began in May was still ongoing and had included a number of meetings to consider the possibility of Fabricated or Induced Illness. No one can possibly imagine the amount of unnecessary stress this creates for our family. How can fabrication even be considered as a possibility?

Our daughter is continuing to improve. She is slowly gaining back some of the weight she lost. In September, her daytime naps stopped. Lucy has even been able to return to school on a part-time basis for the first time in 18 months.

How can anyone possibly think we fabricated her illness when we are fighting so hard to help her get better – with obviously successful results?

The bottom line is: we would give anything to be able to go back and change our minds about granting consent to HPV vaccination for our daughter.