Floating Harbor Syndrome Support Group of North America

FLOATING HARBOR SYNDROME

THIS PAGE IS BEING MOVED TO:
www.geocities.com/floatingharbor@sbcglobal.net/floating-harbor.html OR E-mail us at: floatingharbor@sbcglobal.net

**None of this information is intended to be medical advice. Please see a geneticist for diagnosis and more information.
Floating Harbor Syndrome is a rare genetic disorder that was named for the first two identified patients who were seen at Boston Floating Hospital and Harbor General Hospital in California. While a more extensive list can be found below, the main characteristics of this syndrome are:
*short stature
*delayed bone growth
*delay in expressive language
*distinct facial features.

The exact cause is not known, and only around 20 cases have been indentified in medical journals and literature. More information can be obtained by contacting:

Floating Harbor Support Group of North America
160 Guild NE
Grand Rapids, Mi 49505
JDSwanson@aol.com

FEATURES OF FLOATING HARBOR SYNDROME

*Short Stature (very low percentiles, off the charts eventually)
*Delayed Bone Growth (in a bone age x-ray for instance, a 7 year old could have the bone age of a 3 year old)
*Delay in Expressive Language (understands, but has trouble speaking, 18 month olds usually only say 2-5 words like "mama, dada, baba" etc.)
*Distinct facial features (apparent by 3-4 years of age, broad nose, wide mouth, thin lips, deep set eyes and small, triangular-shaped face
*Intolerance to the sun/bright lights

OTHER SYMPTOMS--(not all children will have these)
*low birth weight (<3rd percentile)
*prenatal growth retardation
*feeding difficulties
*odd and hyperkinetic behavior
*clubbed ends of fingers
*excessive body hair
*long eyelashes
*dental abnormalities
*thin lips
*delayed learning ability
*Celiac sprue (gluten intolerance)
*additional thumb
*sacral dimple (additional dimple around the tail bone area)
*constipation
*pulmonary stenosis (narrowing of a ventricle)
*hypospadius (low-placed opening at the end of penis)
*short or absent filtrum (space between nose and lip)
*small deepset nails/claws
*dysplastic hip
*ectopic/supernumerary kidneys
*high-pitched voice
*cataracts
*broad &/or flared nostrils

WHAT TO DO NOW

1. If you do not already have a diagnosis from a geneticist it would be advised that you see one to get a definite diagnosis. As there is no "treatment" per se for Floating Harbor Syndrome, it is not wise to assume that this is what your child has and miss any treatment for another disorder that your child may truly have.
2. The only real "treatment" is to fix the symptoms if that is warranted. For instance, if your child has hypospadius you could opt to have that surgically corrected.
3. The use of sign language has greatly helped some parents whose children have Floating Harbor Syndrome. Several simple, inexpensive books are available at the book store or library. Just begin by looking up words while you are eating or playing, for instance "cereal" or "truck". By adding words slowly your child's vocabulary will grow, and it is a great joy to be able to finally communicate with your child.
4. Speech therapy has helped when the children are over three years old. Tutoring in reading or other subjects helpful when school-age.
5. Use of hat and dark sunglasses when in the car or going outside.
6. Make sure your child is getting as many calories as possible (a snack at night is helpful) and lots of good nutrious foods and vitamins.
7. Contact the Floating Harbor Support Group for more information, pictures of kids with Floating Harbor and medical articles regarding this syndrome. Address and e-mail are above.
**In EUROPE contact:
Floating Harbor Syndrome Support Group
27 Hatfield Road
Dagenham
Essex RM9 6JR
Tel: 0181 517 6842

Helpful Links

Online Mendelian Inheritance in Man-Floating Harbor Syndrome Articles
Features of Floating Harbor Syndrome