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We spent two nights on A/E trollies..I was so afraid to keep her at home..

Date 29.04.2016

My daughter was 13 in September. Started secondary school then also. She came home with the Gardasil injection form to be signed. I did research it and spoke to our GP about it. He stated if it were his daughter he would allow her to get it. So I thought, well, he must know more about it than I do.
I signed the form.

She got her first dose of the injection on October 15th.
My daughter said she did’nt feel well a few days later - I just assumed it was flu etc... Then it went on.. continued .. for days /weeks.

We took her to the GP who said it was probably her period being so heavy, so they done her bloods. They came back ok. He also diagnosed her with costochondritis. At least we had a name for her chest pain. She kept complaining of chest pain, jaw pain, finger pain so we referred her ourselves to a Rheumatologist she had when she was younger as she had hypermobility then. That was nothing to concern us back then but I knew that the way she described things now that it was her bones/joints that were hurting her the most. He said it was chronic HMS. 

Two weeks later her pain was unbearable - we spent two nights on A/E trollies.. I was so afraid to keep her at home. Then we went back to the Rheumatologist and he gave her a steroid injection to her chest. No relief.

Back a week later with body pain, this time he diagnosed EDS - Ehlers Danlos Syndrome.

Back a week later and he diagnosed Fibromyalgia and through all this only adjusting her pain relief but getting no actual relief.

We took her back to her paediatrician she had when she was born due to recurrent UTI. He admitted her. Done all the tests in the book. Came back with chotro and reactive arthritis. Possibly due to a viral infection.  I didn’t believe them.. We are seeking a 2nd opinion in Crumlin hospital.

I’ve brought up the subject of Gardasil being given just prior to her getting ill. It’s always been dismissed. She is a dancer - at a high competitive level. She has had to try keep her joints moving but has had days she can’t move at all... The doctors keep insisting she flex her muscles. I wish they could see her when she is’nt even able to swallow cos her heart hurts (as she puts it).

So here we are today. She has tried to stay at dancing . She lasted yesterday for ten minutes. Back in October she could dance for three hours including stamina.

I am at my wits end. We are looking into hydrotherapy for her joints and a pain management specialist. I’m sick of being told to just try to get over the pain, to concentrate on other things. "Is she stressed"??? Eh yes.. she’s stressed cos she is so sore.

Today she lies in bed while her friends go on a trip to a Cash and Carry outing in school. She'd have loved that. I just wonder where to go from here. I look at her sick almost every day and its heartbreaking. She went from being a dancer to someone who wants to dance with all her heart but isn’t able to. All I can do is believe she will get better as quick as she got sick.

Lilly

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