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Archive for the ‘Guillian Barre Syndrome’ Category

My 12yo daughter, my only child who has received the Gardasil vaccinations is now suffering from a neuromuscular disorder as a result of the vaccine.

She received the Garasil vaccine after our paediatrician recommended it, stating that it was time to start her on the vaccine and it was safe. I only knew that it protected you from several forms of cervical cancer and was also told it was mandatory in some states for girls ages 9-26 and was part of the recommended vaccinations that young girls her age should get.

My child’s reactions started around the 3rd dose. She began losing her balance while performing kick-jumps in karate class in which she had been in for 4 years. I just thought she wasn’t doing the kicks correctly and told her to try harder next time. The loss of her balance continued. She complained of severe cramping in both legs, tingling, pinpricking and nerves jumping in her hands and legs. She started experiencing headaches on and off. Tylenol sometimes minimally relieved the pain.

She had had a growth spurt over the last 3-4 months and I associated the headaches with the onset of puberty. She fainted in that 3-4 month window when her symptoms first began and continues to have weakness and near fainting episodes. She has had pain in her upper back and chest.

Within a couple weeks she started walking oddly. This walk became more prominent and more severe with her swaying from side to side, needing to spread her feet out for a wider base of support in order to carry her body.

I requested the paediatrician to refer my child to orthopaedics, thinking possibly she had a fractured ankle or foot. The paediatrician looked at her feet and ankles only, did not test reflexes or much of anything. The paediatrician flatly refused saying, “Oh no, its nothing more than a podiatry issue; something simple.” I disagreed telling the paediatrician it had nothing to do with podiatry – her feet looked OK, the problem was inside the ankle/foot where there was possibly a broken bone or fine hairline crack. I also mentioned that no x-rays had ever been taken to look for anything.

The paediatrician referred us to a podiatrist. We saw a podiatrist for the next couple of months who moulded her feet for shoe inserts in which insurance did not cover and told her to do foot exercises. He also took x-rays which showed no fracture. My child wore the shoe inserts and did foot exercises but did not get any better. Her ability to walk became worse and the kids at school began making fun of her calling her ‘penguin’.

I would tell my daughter to please try and walk straight as possible putting one foot before the other thinking that somehow she had developed a peculiar walking habit. I bought her better shoes with good soles and support, but nothing seemed to help. Then one day I happened to look at both legs, side by side, not just looking at her feet and ankles. It was quite obvious that one leg was wasting away – the muscles were shrinking and much smaller than the other leg. I knew then that this was serious.

I took her back to the paediatrician and showed her this. At this point, the doctor agreed she needed an orthopaedic referral. Was I ever furious! When we finally did get into to see the Chief of Orthopaedics at the Children’s Hospital he took one look, examined her, watched her walk and told me she has a neuromuscular illness and needed a specialist.

On Christmas Eve we were getting a spine MRI to see if possibly a lesion or something operable was causing the problem. The MRI was normal. From this time, 2 weeks before Christmas, we waited another month just to get the first appointment with a specialist. The appointment actually happened a couple days sooner than the actual set date once I emailed the specialist and asked, “Could my child’s illness be caused from HPV vaccines?” It was almost like a light had been turned on! He immediately phoned me, directed me to bring her to the clinic and plan for admission into the hospital. This is how we got the ball rolling and started figuring out the relationship to Gardasil.

She has had numerous tests to include a spinal tap. My child has now been hospitalized twice since Jan 09 and will be readmitted within the next few days again for another 2-3 days infusion therapy of immunoglobulin. It is thought the HPV vaccines caused her immune system to go into overdrive attacking the peripheral nervous system. The damage so far is in both legs – not just the covering of the nerves called the mylin sheath; but the nerves themselves, called axons.

The diagnosis initially was Chronic Inflammatory Demylinating Polyneuropathy in Jan 09 which is a chronic form of Guillian Barre syndrome. In Feb 09 the discharge diagnosis was similar to the month before being Mixed Axonal Inflammatory Demylinating Polyneuropathy.

This illness resulted from a so-called harmless recommended vaccination that has caused great devastation for my child and family. She doesn’t run or jump, nor does she move very fast at all anymore. She misses school because of the numerous medical appointments or is unable physically to attend.

The medication has side effects as well. I’m blessed that she still has an appetite, but on the other hand she’s gained weight because she’s more sedentary and that puts more strain on her legs.

Every morning I put thick long socks and braces on both of her legs and she holds out her hands so I can pull her up to a standing position so she can walk. In the evening when the braces come off I inspect her feet and legs for pressure points or blisters starting. Some days its too hard for her to carry her backpack to school, so I carry it in for her. The backpack has to be a certain kind with a long strap to place over her head in order to distribute weight evenly or else she’ll fall. She can’t come into the living room which is sunken down one step without falling. We’re working on accommodating for that. I have to constantly remind her to put her stronger leg first when stepping because she falls. She drags her feet and moves slowly. The braces cause fatigue and blisters. She’s recently been remoulded for a second set and hopefully they will work better.

The hospital stays are not the most enjoyable either even though the staff and doctors are great. It is not fun at all for a child to be stuck with needles at all hours, constantly forced to take medication and being woken up from her sleep, not to mention the side effects of the medications. Her life and mine have been devastated.

I blame myself for allowing the paediatrician to give her the HPV vaccines. I didn’t sign a consent form or anything, but I should have stopped them. I just plainly didn’t know the dangers. I thought it was like any other immunization. Had I known, read about it or been told that girls or young women have experienced side effects I surely would never have allowed my child to get this vaccine! Why wasn’t I informed? I’m mad, I’m really mad about that!

I saw the many, many commercials with the young girls, telling us to get the great vaccine that would prevent us from having cervical cancer. I thought, well that’s one disease that I won’t have to worry about my daughter getting. Little did I know that the same vaccine would practically rob her of her legs; and we still don’t know if the disease has stabilized or what else it will bring.

The CDC and FDA need to continue to pay close attention to the numerous serious side effects this drug has caused. They need to investigate it further, and stop the use of Gardasil until further research has been performed and this drug deemed absolutely safe to administer. The research appears to be very limited in the age group 9-14 year olds. Merck should make the research of any drug readily available to all parents and have a completed questionnaire by the parents prior to administration of the HPV vaccine. There should be black box warnings for anyone with a strong history of allergies, environmental allergies, asthma, ezcema, multiple allergies, etc., even if the parent feels their child has outgrown the allergy and meds are not being used anymore.

Parents should be thoroughly informed of risks/benefits and also provide consent in writing prior to administration of the HPV vaccine. We live in the United States. The greatest country in the world. You don’t expect this from the U.S., you might expect it from a 3rd world nation but not the U.S.!

My daughter unfortunately still suffers from this illness and the doctors cannot tell me if she’s going to get better or worse. All we can do is hope and pray, and get the word out. My daughter is beautiful, green eyed pre-teen with long blonde hair who loves all people and living things. She’s fascinated with all animals and insects; lady bugs, cats, horses, and even ants. She can hear a bird chirping when no one else can. She loves art and can sketch perfectly anything she sees. She’s compassionate and always wants to give money or food to the homeless.

She’s asked many times, “Why did this happen to me?” Please make sure you don’t have to answer your child when she asks this difficult and heartbreaking question.

My child is currently being followed by a team of specialists. Hopefully if she’s up to it, she will be attending a summer camp for special needs kids this year. Thank you for your concern and you may contact me for further posts or questions. We’ve got to make people aware of what is going on.

UPDATE:

My child just got out of hospital after 5 days getting IV immunoglobulin(IVIg) and high dose IV steroids.  They are trying her on a diabetic drug that has had promising results in patients with motor neuropathies, along with continuation of the steriods for several months and every 30 days she’ll go back into infusion center for IVIg.

Unfortunately she is worsening: the illness is moving upwards, affecting her thighs and hip region now.  The doctors have told me that they don’t know what she has and can only try and treat the symptoms.  They speculate it’s a fast progressive form of ALS; again they’re not sure. ALS (Amytrophic Lateral Sclerosis or Lou Gehrig’s disease) is an extremely debilitating disease which causes overall body paralysis then death.

The girls that had the HPV shots and are affected with ALS have a fast progressive form of it. Merck should be ashamed. How can they sleep at night knowing they are harming and killing little girls and women?

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