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Sturge-Weber:
This is a rare syndrome that is sometimes associated with
port wine stains located around the eye. A MRI showing abnormal
blood vessels surrounding the brain can confirm the diagnosis.
There is absolutely no treatment for Sturge-Weber. Many patients
will never display any symptoms of the syndrome, which may
include glaucoma, seizures and developmental delays. Patients
with Sturge-Weber on average may have lower IQ's and developmental
delays but once again, individuals with positive findings
on MRI may be totally normal.
What
if the Port-wine Stain is traumatized?
It will
bleed like any other cut on the skin. Although the bleeding
may be steady, simply hold pressure and take your child to
the Emergency Room if the bleeding does not stop within 10-minutes.
Any laceration can be sutured.
What are
the treatment options?
The gold
standard treatment of choice is laser therapy. A yellow-light
laser, such as the pulse-dye laser is absorbed by the red
color of the capillaries, heating up the vessels from the
inside and thus causing destruction of the vessels.
·
The average patient can expect an 80% fade of the lesion after
8 treatments.
· The best candidate for laser therapy has fair skin
and blue eyes.
· Lesions on the face, forehead, and neck will generally
achieve a better response than those located on the extremities.
All Port-wine
Stains are different--different sizes, different areas of
the body--therefore, different results occur. Occasionally,
a lesion may be resistant to treatment and will not fade.
' We do not treat lower extremity PWS due to their resistance
to treatment and their increased risk of blistering and scarring.
' We do
not recommend treatment of PWS overlying a vascular tumor,
as these lesions are very resistant to treatment.
Is
there any support for the children or families?
Children's
Medical Center of Dallas offers various areas of support to
children and their families. A social worker is available
if families have questions regarding the family's ability
to optimally meet the child's special health care needs. Also
there is spiritual support available to patients and families
on a 24-hour basis through Pastoral Care. If you have any
questions, please contact our office at (214) 456-8888.
The Internet,
while being very informative, can be equally uninformative.
The Internet can provide you with information on Port-wine Stains,
but it does not address the needs of your particular child.
Children are different and therefore their Port-wine Stain will
behave differently than that of any other child. The Internet
will typically show you the worst case
for "shock value" and provide a lot of information
on Sturge-Weber. Please remember that not all children with
port-wine stains have Sturge-Weber.
Dr. A.
Jay Burns, M.D.
Director, Vascular Anomalies Clinic
The Fogelson Plastic Surgery &
Craniofacial Center for Children
Children's Medical Center of Dallas
6300 Harry Hines Boulevard
Suite 600
Dallas, Texas 75235
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