Raquel from Valencia

spainRAQUEL DOMINGUEZ

Town- city- country:  Alboraya 46120. Valencia. Spain.

Diagnosis Hospital Clinico de Valencia: initial paroxistic movements and pseudocrisis. Raquel was unable to walk. Neurologist who is treating the girl at the moment has diagnosed: Demyelinitation, left hemiparesis and ataxia as consequence of inflammatory process in the trunk or cerebellum due to an auto-immune process. Pseudocrisis. Incapacitated

Symptoms: Seizures, loss of consciousness, headaches, tachycardia, disconnection towards environment, loss of strength (mainly left side), blurred eyesight after the crisis, dizziness, joint pain (mainly neck),vertigos, weakness in the legs, irregularities in the menstruation (she always had regular periods, now this is not the case), loss of feeling in hands and knees, urticaries (skin condition), incapacity to walk (after the crisis), incapacity to take physical exercise.

Visits to Emergency Hospital Doors 5/16/2009,11/7/2009,11/26/09

Hospitals where she has been admitted Hospital Clínico Universitario de Valencia , Casa Salud Hospital (Valencia)

Hospitalizations Hospital Clínico Universitario de Valencia: From 2/4/2009 to 5/6/2009 (she was practically two months in the Paediatric Intensive Care Unit). Hospital Casa Salud (Valencia) From 5/6/2009 to 5/13/2009

Dates of vaccination 1st Shot: 11/18/08;  2nd shot 2/4/09

Vaccinated with Gardasil. Batch 1st Shot: NH45150 2nd Shot NH 52670

Duration of the disease From the 2/4/2009 to today 2nd of February 2010.

Evolution of the Disease Five minutes after receiving the second shot she becomes dizzy,  after ten minutes she begins with tachycardia, temperature 38´2ºC and seizures, so the doctor decides to inject a valium and call an emergency ambulance. She is removed to hospital where she stays at the emergency doors from 14:00 to 18:00 (they make a TAC and a lumbar puncture) and finally she is admitted to the Paediatric Intensive Care Unit as they cannot stop the seizures despite the fact that she was given valium. That night she was intubated (attached to a breathing machine) because she had an apnea – breathing problems and in a coma. The second day the doctors tell us that perhaps it is an Encephalitis because the lumbar puncture was positive, so they prescribe her antibiotics. After they repeat the test and say it is not Encephalitis. Our daughter stayed in the Paediatric Intensive Care Unit practically two months. She was intubated on four occasions since she did not respond to anticomicial treatment (an agent that prevents or relieves convulsions). Two days after our daughter was in hospital another girl (the other Valencian girl) was admitted to hospital for the same symptoms as our daughter: seizures, loss of consciousness. She also stayed in the Paediatric Intensive Care Unit.

Doctors give us different diagnoses, first they told us that it was a virus, after that the inflammation had to be in the trunk, finally they told us that it was an immunological problem and for that reason they give her corticoids (a steroid) and immunoglobulins.

Drastically from the 15th of March the specialists change their diagnosis to Pseudocrisis. When Raquel is on Ward we realise that she can not walk. Doctors decide to withdraw anticomicial treatment, and from that moment on she begins having seizures practically every day. She remains in Ward another month and she was discharged from hospital without treatment and with ataxy – loss of the ability to coordinate muscular movement (she was in a wheelchair as she could not walk at all). After we take her to another hospital, a private neurologist states that she had demyelination* due to an inflammatory process on the trunk or encephalus, ataxy and left hemiparesis (weakness on one side of the body). *Dymelination is a loss of myelin, the substance in the white matter that insulates nerve endings.   He gives her anticonvulsive treatment and a rebuilder of the myeline. After leaving that hospital at the end of May she begins a rehabilitation programme (she stayed in a wheelchair for three months). At the end of July she begins to walk. In October 2009 the neurologist prescribes to decrease the medication little by little. In November (after six months without seizures) she has another crisis and after that she is unable to walk. On the 27th November she has another crisis, so the neurologist increases the medication. Until 4th January 2010 she cannot walk. Now she goes practically every day to the swimming pool as requested by the rehabilitator.

Not Recovered

From the day in which she received the vaccine, her life has changed totally. She does not remember practically anything that happened in two months while she was in the Intensive Paediatric Care Unit. When she was there she sometimes felt she was going to die. When they intubated (breathing machine) her she suffered a lot. She could only see her parents for a little while a day. When her family came to see her, she saw them through a window, she communicated with them with a blackboard. When we thought she was recovered because they told us she was not going to have more seizures and she was sent to an ordinary ward, there she became ill again and she was sent back to the Intensive Paediatric Ward. She could not see her friends until she was better.

The first time she tried to walk, we realised she could not. She could not congratulate her brother on his birthday as she was intubated, or speak to congratulate her grandmother or her cousin on their birthdays. She has a very bad memory and cannot remember when she was in the Paediatric Intensive Care Unit – (she cannot remember many things that happened to her during her stay in the Paediatric Intensive Care Unit). When she was on the Ward she was happy because she was with her parents but there was always a nurse with us. She was in hospital at Fallas (Valencian festivity) at Easter and even on her birthday. We made a party to celebrate her birthday in hospital. After leaving that hospital she went to another, luckily she was there only one week. When she arrived at home she was in a wheelchair for three months, it was terrible, she could not go to school for five months, she could not go out with her friends, she could not do the things other girls do at her age for six months. She started taking medicines and a special diet.

In September she was happy because she started school, she had very good marks but in November she was ill again, when she saw she was in hospital again she felt bad. More when she realised she could not walk and she had to use a wheelchair again. She and all the family felt they were repeating the nightmare no school, no friends, no walking. Often she wonders herself why this has happened to her. She has grown very much, no longer she worries about trivialities.

All the family are living together to care for her, but it is very hard to see how your daughter is suffering so much and you cannot do anything to help her, besides we feel that Health Authorities do not care about what is happening to our daughter and the other ones. Really we feel disappointed and helpless.

Our daughter says she does not want another girl to suffer what she has suffered, that sentence is always in our mind.

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