“Since Niamh has been poorly it hasn’t stopped her from doing anything. We go on long family walks, she goes dancing and swimming every week”

Niamh

In April 2012 when our daughter Niamh was 3 and 1/2 years old on her face under her eyes and over her nose some redness appeared .After a week of it being there I took her to our local doctors who said it looked like an infection. So he gave her some anti-biotics which seemed to clear it up but after finishing them it came back. So I took her back to the doctors the following week only to be given dermol cream which just seemed to aggravate it. So I stopped using it on her and took her back to the doctors again only to be given more anti-biotics. By this time Niamh started to look puffy under her eyes so again I took her back to the doctors to be given hydrocortisone cream, which didn't help in the slightest as it seemed to make her skin look angry. Comments from some of the doctors when I took her weren't helpful either as I got told she had poor hygiene!!

Niamh had also started to complain of her legs aching and saying she kept on feeling tired and complaining of tummy ache. By this time as you can imagine I knew something wasn't right. So in the end I ended up asking to see a doctor who is an ex dermatologist. We went to see her she thought Niamh had something called Urticaria an allergy to berries. We stopped giving her berry related foods. To help the redness on her skin we were given sun cream. After a week of using it, redness on her fingers appeared and also on her elbows. By this time alarm bells were ringing and I knew there was something more serious. So I took her back to see the same doctor who thought it was Urticaria. She examined her skin and referred her to Sheffield Children’s Hospital to see the dermatologists there.

In July 2012 after waiting 6 weeks to see the dermatologists at hospital we went to see the dermatologists straight away they said what it was. They did blood and urine tests which all came back negative. By this time the redness started to appear on her knees and ankles. We were still using sun cream as that seemed to calm it down. We had four hospital visits to see the dermatologists after the fourth visit they referred us to the rheumatologists to make sure they hadn't missed anything as they knew what it was but didn't have anything to say what it was. In November 2012 when Niamh was 4 years old we went to see the rheumatologist who said it was Juvenile Dermatomyositis. They referred Nimah for an MRI scan. When Niamh went for that it finally confirmed that she had inflammation on her muscles. At the end of November after getting the MRI results Niamh got admitted to Sheffield Children’s Hospital for a week to have further tests including a CT scan, blood and urine tests, speech therapy, physio examinations, a lung examination and an echo gram of the heart to make sure it was what they have said. We finally got the diagnosis of Juvenile Dermatomyositis. After all the results from the tests came back we got told Niamh had a mild form of Juvenile Dermatomyositis. Whilst in hospital Niamh was given her first lot of treatment of IV (steroids via a drip) I her mum got trained how to give her an injection of Methotrexate which she has weekly, on a daily basis she was having four Prednisolone tablets a day. As the redness started to fade her muscle strength got slightly better. After two months on that dosage they decided to try and wean her off Prednisolone. It looked like things were working.

In March this year 2013 Niamh suffered a relapse/flare up. The redness started coming back and her muscle strength wasn't what it should be. She started to complain of tiredness and tummy and leg ache again. So the rheumatologists had in her in hospital for a six day visit over a two week period to give her a IV steroid (via a drip) to help give her a boost. After this steroid boost they upped her medication and added extra medication.

Niamh now takes Prednisolone (everyday), Hydroxochloroquine (everyday), Methotrexate (weekly) three different steroids, Calcichew, Folic acid (to help prevent ulcers) and Lansoprazole (stomach liner). She has physio once a week at the Princess Royal Hospital in Huddersfield. We do several exercises at home with at home every day. Niamh has a little brother who helps with her exercises and makes it more fun and easier for her to do. Since Niamh has been poorly it hasn’t stopped her from doing anything she goes to school every day apart from when she has hospital appointments. We go on long family walks, she goes dancing and swimming every week. Myself and my husband to our knowledge do not know of any family history where someone has had an auto-immunes diseases or a connective tissues disorder. With Juvenile Dermatomyositis being rare it is a great relief as a family being able to find support groups to share our story with and read other families stories with children who are going through what our daughter is going through and what we as a family are going through.

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