PRESCRIPTION PARENTS, INC.
Parents helping Parents of children with cleft lip & palate
Other Internet Resources Related to Cleft
Prescription Parents (PP), a local Boston organization run by
has helped parents in Massachusetts, New Hampshire, Vermont, Maine,
Island, and Connecticut for over 40 years. We have now merged with
for Faces of Children (FFC), a New England-based, not-for-profit
which provides patients and families with the most accurate,
and accessible information about facial conditions (including cleft
cleft palate, and other head and facial differences ) and advocates for
the best care possible for these children. Please check out their
website at http://www.facesofchildren.org/
number is 617.355.8299.
Prescription Parents has attempted to meet the needs of parents of
who were born with clef lip and cleft palate by helping each other and
by offering resource material on specific areas of concern.
Presceiption Parents still meets on an as-needed basis; and our
information could still prove helpful. Hence we are keeping this
The Q&A's below are, as before, in the present tense. They
are included here because others interested in setting up similar
might find it helpful to know how Prescription Parents was set up.
Q. Who can be a member?
A. All parents of children born with these or related conditions, or
anyone interested in cleft lip and palate is welcome. There is a
membership fee to defray printing, postage, etc.
Q. Does Prescription Parents endorse specific treatment centers
A. Prescription Parents does not endorse any hospital or medial
but only encourages parents to seek competent medical care from
with whom they feel comfortable. Professionals from all the major
areas serve on our Medical Advisory Board.
Q. Is Prescription Parents affiliated with a national group?
A. Prescription Parents is a member of the National Cleft Palate
Prescription Parents is one of the oldest continuously operating groups
and also one of the largest groups in the United States.
Q. Why the name 'Prescription Parents'?
A. We want to be "good medicine" for our children. Our children,
all children, have many needs and require support and guidance. We
our children's special needs are best served when parents and
work in a cooperative partnership.
Treatment of Cleft Lip & Palate
The medical treatment for a child with cleft lip and/or palate usually
involves several medical specialists and auxiliary services.
with professional care children born with cleft lip and palate are
habilitated. The center, hospital, or clinic where your child is
will refer you to various specialists as needed. Prescription Parents
supplementary literature available; if you wish to receive some
material, indicate so on the membership form (below) or call
Briefly, the following specialties may be involved in the correction
of your child's cleft. Since each cleft is unique and presents a
set of conditions, your child's doctor or team is best able to chart
course for you.
Prescription Parents urges you to ask questions if you are unclear
any area of your child's treatment. The specialists understand that
information probably is new to you and welcome your interest. Also,
understanding of and confidence in the treatment reassures family and
and makes them comfortable with the baby and his condition. Later, your
knowledge and assurance is beneficial to the child.
Your baby should be evaluated by a plastic surgeon soon after discharge
from the maternity hospital. The surgeon will be able to give you
guidelines as to the kind of surgery required and the timing. Usually
the lip and palate are repaired in several operations and occur anywhere
from six weeks of age (for the lip) to eighteen months (for the palate)
depending upon the individual infant.
From infancy your baby born with a cleft palate should be followed by a
specialist in ear, nose and throat care. Often children with clefts of
the palate are susceptible to a problem with fluid in the middle ear
which is easily correctable, but which must be monitored to assure
hearing, as well as to encourage normal speech and language
Of course, oral hygiene is as important for the child born with cleft
as for any other; the older child is followed carefully as the tooth
gum structure often requires the specialties of prosthodontia and
to improve speech and chewing abilities.
4 SPEECH AND HEARING
Initially the parent receives counseling about possible problems and
exercises for the young child. Later, a therapy program, if needed, may
be determined for the child. With the advent, in 1974, of the Special
Law, Chapter 766, many of these services are provided through the local
school system from age three; Prescription Parents recommends that all
services provided through the school be carefully coordinated with the
medical treatment center.
5 GENETIC COUNSELING
The parents, and eventually your older child, usually have many
about the causes, occurrence, etc. of clefts. A genetic counselor can
answer these and help families evaluate their situations. You might
with your child's doctor for a referral or Prescription Parents would
happy to provide you with a list of those counselors known to us in the
ACTIVITIES AND SERVICES
- Newborn Program
- Public Education
- Informational Meetings
- Social Events for Families
- Advocacy Positions
- Printed Materials
MEDICAL ADVISORY BOARD
Prescription Parents has been most fortunate and is grateful for the
and advice of physicians and specialists who have agreed to serve on
Medical Advisory Board. Their active participation at the meetings, in
public statements and appearances, and in other ways, as well as their
endorsements have been deeply appreciated.
Our Medical Advisory Board is comprised of specialists form the
of: Surgery, Otolaryngology, Dentistry, Speech Pathology and Audiology,
Pediatrics, Genetics, Psychiatry and Psychology.
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