PRESCRIPTION PARENTS, INC. Parents helping Parents of children with cleft lip & palate


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Prescription Parents (PP), a local Boston organization run by volunteers, has helped parents in Massachusetts, New Hampshire, Vermont, Maine, Rhode Island, and Connecticut for over 40 years. We have now merged with Foundation for Faces of Children (FFC), a New England-based, not-for-profit organization, which provides patients and families with the most accurate, up-to-date, and accessible information about facial conditions (including cleft lip, 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/   Their contact number is 617.355.8299.

Prescription Parents has attempted to meet the needs of parents of children 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 information online.

The Q&A's below are, as before, in the present tense.  They are included here because others interested in setting up similar organizations 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 suggested membership fee to defray printing, postage, etc.

Q. Does Prescription Parents endorse specific treatment centers of plans?

A. Prescription Parents does not endorse any hospital or medial treatment, but only encourages parents to seek competent medical care from specialists with whom they feel comfortable. Professionals from all the major treatment 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 Association. 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, like all children, have many needs and require support and guidance. We believe our children's special needs are best served when parents and professionals 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. Fortunately, with professional care children born with cleft lip and palate are successfully habilitated. The center, hospital, or clinic where your child is treated will refer you to various specialists as needed. Prescription Parents has supplementary literature available; if you wish to receive some informational material, indicate so on the membership form (below) or call XXX-XXX-XXXX.

Briefly, the following specialties may be involved in the correction of your child's cleft. Since each cleft is unique and presents a different set of conditions, your child's doctor or team is best able to chart the course for you.

Prescription Parents urges you to ask questions if you are unclear about any area of your child's treatment. The specialists understand that this information probably is new to you and welcome your interest. Also, your understanding of and confidence in the treatment reassures family and friends and makes them comfortable with the baby and his condition. Later, your knowledge and assurance is beneficial to the child.

1 SURGERY

Your baby should be evaluated by a plastic surgeon soon after discharge from the maternity hospital. The surgeon will be able to give you general 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.

2 OTOLARYNGOLOGY

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 space which is easily correctable, but which must be monitored to assure normal hearing, as well as to encourage normal speech and language development.

3 DENTISTRY

Of course, oral hygiene is as important for the child born with cleft palate as for any other; the older child is followed carefully as the tooth and gum structure often requires the specialties of prosthodontia and orthodontia to improve speech and chewing abilities.

4 SPEECH AND HEARING

Initially the parent receives counseling about possible problems and corrective 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 Education 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 questions about the causes, occurrence, etc. of clefts. A genetic counselor can best answer these and help families evaluate their situations. You might check with your child's doctor for a referral or Prescription Parents would be happy to provide you with a list of those counselors known to us in the Boston area.

ACTIVITIES AND SERVICES


MEDICAL ADVISORY BOARD

Prescription Parents has been most fortunate and is grateful for the expertise and advice of physicians and specialists who have agreed to serve on the 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 fields of: Surgery, Otolaryngology, Dentistry, Speech Pathology and Audiology, Pediatrics, Genetics, Psychiatry and Psychology.


Other Internet Resources Related to Cleft Lip/Cleft Palate

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