Floating Harbor Syndrome Support Group

Welcome to the Floating Harbor Support Group web page!  We have 45 member families from 12 different countries, all with children who have Floating Harbor Syndrome.  For more pictures of children and adults with Floating Harbor Syndrome click on the "Services" tab on the upper left part of the page.   For more about the group go to the "About Us" tab above.  

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 of Floating Harbor Syndrome is not known, and only around 20 cases have been identified in medical journals and literature. More information can be obtained by contacting:

1964 Sheffield Rd.
Harmony, NC  28634
littleflock@yadtel.net

Rhett, 7, USA

Latest News!

 Our support group has been contacted by Boston Children's Hospital and Johns Hopkins Institute of Genetic Medicine who both have an interest  in studying Floating Harbor Syndrome.  Studies would help us to learn more about FHS, and there is the possibility of finding a genetic marker for FHS to help in diagnosing current and future FHS children.   Information has been sent to member families.  If you are NOT a member and do have a child or adult with FHS and would like to be part of the study please contact us for more information.  

What We Do

We offer a newsletter published 3-4 times a year with articles by other families with Floating Harbor children and adults, phone consultations, and e-mail support for questions and concerns regarding FHS.   We also have medical journal articles available if more information is desired.  

The 2008 Spring issue of "Safe Harbor" will be mailed out this week. 

  If you would like to send a picture, article, update or questions for the Summer Issue,  please send them to:

littleflock@yadtel.net

If you would like a FREE copy, please email us at:  littleflock@yadtel.net  and let us know if you'd like it sent regular mail (provide address please) or via e-mail. 

MAJOR 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 for more pictures of FHS children click on the "SERVICES" tab)
*Intolerance to the sun/bright lights

*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. OR, cut out magazine pictures of children sleeping, eating, playing, drinking, etc. and glue them to cardboard for your child to point to what he or she wants.  

4. Speech therapy has helped when the children are over three years old. Tutoring in reading or other subjects helpful when school-age.  (See #9 for more information on this topic.)

5. Use of hat and dark sunglasses when in the car or going outside for those who are sensitive to sunlight.

6. Make sure your child is getting as many calories as possible (a snack at night is helpful) , lots of good nutrious foods and vitamins, and  plenty of rest. 

7.  Let your child know everthing that is going to happen and when it will happen ahead of time.  Most FHS children do NOT like when plans or things change and they aren't informed about it ahead of time.

8.  Keep a good bedtime routine and make sure they get enough sleep.  Try running a fan on low for background noise and try to keep things low-key (nothing to interest them) around the house for about an hour after they go to bed.  If they do stay up late and are cranky, naps work wonders the next day. 

9. Request  the FHS Support Group's packet for teachers, educators and therapists.  Pass them on to anyone who assists your child.  

10. Contact the Floating Harbor Support Group for more information, pictures of kids with Floating Harbor and medical articles regarding this syndrome.