| My Child Has
Prader-Willi
Syndrome
Now What?
You’ve
learned that your child has this strange sounding "syndrome," a word that just
means a group of signs and symptoms which together identify a condition, and you have so
many questions... |
What IS Prader-Willi
Syndrome?
Prader-Willi syndrome (PWS)
is a birth defect of unknown cause. Infants, because of weak limp muscles (hypotonia),
usually nurse or suck poorly and often must be fed with special nipples or tubes. They sit
up, crawl and walk later than the average child.
Around two to four, most
children develop an insatiable appetite which can result in life-threatening obesity if
not carefully controlled. This appetite, accompanied by easy weight gain, and behavior
problems such as stubbornness and temper tantrums are major problems associated with
Prader-Willi syndrome.
Small hands and feet, short
adult stature, poor balance and coordination, and lack of puberty are characteristics,
too. Not every child has every characteristic, and there are degrees of severity.
Keep in mind that this list
does not include all the positive qualities that children with Prader-Willi syndrome also
have!
Will my child be
retarded?
IQs are usually in the 70s
but vary in Prader-Willi syndrome from as low as 40 to as high as 100 (above 90 is
normal). Normal IQs, even in the 90-100 range, are accompanied by learning disabilities.
Almost all children require some form of special education.
Can PWS be outgrown?
No, it is a lifelong
condition. But most children with PWS learn to feed themselves, are toilet trained, walk,
talk, swim, play, go to school, work and enjoy many pleasures of life.
| Take pride in
your child’s accomplishments and own special individual developing personality.
ENJOY TODAY! |
 |
Then why do I feel so bad?
In a very real sense, you
lost the beautiful normal baby you dreamed about for nine months. And you’ve lost the
hope that the problem was temporary or curable. You’re going through a grieving
process, mourning the loss.
My husband/wife
doesn’t seem to feel about it as I do.
Often the father may
withdraw into his work, respond with anger, refuse to talk about it, or act practical with
comments like "We have to accept it since we can’t change it," while the
mother may be tearful and emotional and see him as unfeeling. Sometimes these roles are
reversed. It is vital that each understand that both are grieving but men and women as
individuals do it at different rates and in different ways. Seek help if it starts to
undermine your relationship.
What can I do to
help my child?
- First of all, take care of yourself and your marriage.
Don’t let this child take over every minute; allow relatives and friends to help.
Keep balance with other children, friends and extended family.
- Find a doctor who knows PWS or is willing to learn.
Don’t be afraid to ask questions---and insist on answers, even if it is "I
don’t know."
- Seek early intervention services. Physical therapy helps
strengthen weak muscles; many need speech therapy.
- Keep a careful, detailed baby book. It has proven to be
invaluable for obtaining services later.
- Provide lots of stimulation---colors, sounds, activities,
talking to your child.
- Set limits. Don’t do for him what he can do for
himself or treat him as if he is handicapped or helpless.
- When eating begins to improve, don’t reinforce it with
food or praise. Start food control when the child becomes mobile, e.g., clear the table
immediately after a meal, keep food off the counters, no more candy dishes on the coffee
table. Locking up food when the child gets older can lower stress on all.
- Learn all you can about nutrition.
- Incorporate exercise in your growing child’s daily
life.
You can
prevent your child from becoming obese by learning to say "NO," even when your
child gets upset and begs for more food. The younger you start appropriate food management
(and exercise), the easier it will be. |
Where can I find
support?
No one seems to understand.
Generally, a young child with PWS
who is not obese looks normal, so family and friends often do not understand either the
need for food control or the parents’ grieving.
The best source of support is other
parents going through similar circumstances. Confidentiality rules bar professionals from
giving you names, but you can give them permission to give out your name.
The Prader-Willi Syndrome Association
(USA) can put you in contact with others in your area or elsewhere, by phone or through
our Web site (http://www.pwsausa.org) and chat room (http://www.pwsausa.org/pwchat.htm).
Advances in
the use of psychotropic medications to improve behavior and mood, growth hormone to
improve short stature and lean body mass---plus all the general research on
obesity---offer much hope for a vastly improved future for today’s child with
PWS. |
A membership includes our bimonthly
newsletter, The Gathered View; availability to our many excellent publications at a
reduced cost; someone to question at any time; an annual conference; and the knowledge
that your dues dollars are helping others in like situations.
We hope you will let us help you along the
way in raising your child. PWSA (USA) is an active group with members of all races and
situations in life.
The Prader-Willi Syndrome Association (USA) was formed in 1975 in order to provide a
vehicle of communication for parents, professionals and other interested citizens. It is
an organization dedicated to the sharing of experiences in how to cope with the syndrome.
Chapters of PWSA(USA) are located in most states and are available for support, education
and advocacy.
An annual national conference, a bi-monthly newsletter entitled The Gathered View,
which incorporates contributions from members as well as professional advice and a wealth
of other written materials and publications on Prader-Willi Syndrome, are all part of
PWSA's effort to carry out its mission.
Supported solely by membership fees and donations, Prader-Willi Syndrome Association
(USA) has made a difference in the lives of many affected by this unique syndrome. YOU,
TOO, CAN HELP. Donations and membership applications may be sent to the address below.
Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Phone: (800) 926-4797 Fax: (914) 312-0142
Email: pwsausa@pwsausa.org
Web site: http://www.pwsausa.org
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