Our daughter Claudia was diagnosed with Morphea in May 2002. I noticed a
greyish mark on her hip in January 2002 and thought it was a dirt mark. I
thought when I next go to the Doctor's I would mention it. The area looked
a bit discoloured and sort of "veiny". I asked Claudia if it hurt her and
she said it didn't, so I wasn't that concerned.
Within eight weeks this mark had extended down her leg and as she is a
ballerina I saw her in her tights and one leg was definately thinner than
the other. I made an appointment with our G.P who agreed with us and
referred her to a Paediatrician. We saw him within the month. He didn't
seem too concerned but referred us to Great Ormond Street Hospital in
London. As soon as they saw her leg they knew what it was. She was brought
in for tests the following week. These were a variety of blood tests and a
thermograph. The thermograph measures the amount of heat in the affected
area. This gives an indication as to how active the Morphea is. They
wanted to start treatment immediately because the Morphea was quite active
and rapidly moving down her leg. She was able to have her 6th birthday
party on the 5th May and then she was admitted.
This is a difficult thing for a parent to take a seemingly well child for
treatment. Claudia screamed for England when she had her drip set up. Then
they gave her a drip of methylprednisilone each day for three days (each
session lasting about 2 hours). This was painless and we enjoyed watching
videos. She became quite emotional and sometimes agressive which was quite
unlike her. We often disappeared off the ward to Peter Pan's Cafe for food
(her appitite really increased).
In a funny way she enjoyed her stay in hospital with so many lovely staff
and fantastic things to do and play with. She went to a Brownie meeting,
got caught by Clown doctors who squirted water at her and played jokes on
her and her friends.
She was discharged from hospital and was given Prednisilone 20mg and Folic
acid 2mls daily and Methotrexate 10mg weekly. It has been over a year now
since her diagnosis and we feel the disease has been interrupted. We've
had a few minor set backs e.g. Claudia started to find the Methotrexate
difficult to tolerate as it irritated her tummy so now she has it weekly
by injection.
She has a tendancy to catch a lot of coughs and colds but generally is
quite bright and happy.
fifi.burks@ntlworld.com
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