| Hi, my
name is Scott and my beautiful 11 yr. old daughter, Holly, was recently diagnosed with
Morphea/linear scleroderma. Around October '98, she thought she had stubbed her left ring
and pinky fingers. We took her to the pediatrician and he didn't think her fingers were
stubbed, because of the claw like symptoms and the skin being tight and discolored. He
then suggested we see an orthopedic surgeon. The doctor looked at Holly and was puzzled.
He ordered a nerve test be done and for her to start physical therapy. By this time, her
left hand muscles were deteriorating and hardness setting in. We went to the neurologist
for the nerve test and eventually found out that the nerves in her arm were normal. Blood
tests were then done for several different things, one being scleroderma. They all came
back negative.
The next step was for her to see a
pediatric rheumatologist at 'Rileys Children's Hospital'. It took him about 15 minutes to
diagnose Holly with Morphea/linear scleroderma. The doctor told us that the drugs that
could be used were worse than the disease itself. This is February ‘99 and Holly's
condition has worsened with new ivory-colored spots near her shoulder and one near the top
of her knee. Both spots have a purplish halo around them and are getting harder. Her left
arm now appears mottled with a light purple accent. The amazing thing about all of this is
she says that there is no pain in involved. Holly is tall for her age and is growing up
quick. Holly has been developing and may be going into puberty very soon. I have been
researching scleroderma since November ‘98 and have found nothing that causes or
cures this disease. People have ideas of what may cause this but are very uncertain. I
have a new idea to think about... what about hormones causing a chemical imbalance in the
body? I am already aware of a few things that may help: vitamins 'A', 'B6', 'E', 'C' and a
multi-vitamin, paraffin wax bath for the hand - this will loosen up the hard skin and is
proven to help. There is also a type of laser treatment to rid any of the spots if needed.
I saw something on the news today that was interesting. They were using radio waves to
heal skin and muscles. This is a brand new procedure.
Holly is my angel in disguise. She
is and has always been a very loving and caring person putting others before her even
before this happened.
If anyone has any information on
what causes this, how to stop it or help treat this disease, please feel free to contact
me at: scotthowe@iquest.net
Update Oct. 1999:
Holly
had an allergic reaction to an antibiotic used for scleroderma. She had a bad case of
hives. The doctor prescribed steroids for her. Within 2 months after that her
rheumatologist told us that her scleroderma was burnt out and there were no signs of any
more progression.
Holly had surgery on her left hand Sept 29, 1999. This was to
remove the scar tissue that formed on her left hand and fingers. The scar tissue attached
itself to her little and ring finger tendons prohibiting her from gripping anything. She
has been progressing very well at physical therapy. She can now grip things and is
starting to get her strength back. Six months from now she will have another surgery on
her left hand to enable her to straighten her fingers out.
10/2001 - Holly is now 14 yrs old now and is doing
very well. She has grown tremendously over a few years approaching 6ft tall.
She is also a honor roll student and very active. Holly decided not to have
a second surgery on her left hand. The first surgery and physical therapy
was enough for her. I must say that the surgery did little for her left
outer 2 fingers. The scleroderma is still in remission, thank god.
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copyright 1999 Scott Howe
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