Hi .MY daughter is 20 years old and she was just diganost with FHS

afew years ago dose anyone have any idea how long this childern live

Ive not heard yet if anyone knows any thing it would help

Thank s

Hi, My name is Donna Newman and I have a 17 year old daughter with FHS.

I have been blessed to get to know many of the other mothers,and

fathers, through the FHS website. We are all trying to help each other.

Dr. Feigold from Boston hospital is currently envolved in a study, and

has contacted many of us. When I ask my doctors, they haven't heard of

any reports of short life expectancy BECAUSE of FHS, but there are so

many symptoms that these sweet angels seem to accumulate in addition to

FHS> I would love to communicate with you, especially about issues of

puberty, that I am sure you have dealt with. Feel free to email me.

donna



--- In floating_harbor_syndrome@yahoogroups.com, "southernbelljt"

<jtolson@a...> wrote:

> Hi .MY daughter is 20 years old and she was just diganost with FHS

> afew years ago dose anyone have any idea how long this childern live

> Ive not heard yet if anyone knows any thing it would help

> Thank s

Hello-- I'm back--- after TOO long of an absence.  It's Deana SWAnson,

still in North Carolina, but moved again.



About puberty, again this is related to the parents and when they went

through puberty.  My husband was shaving at 11, seriously, so around

age 12 Jesse started going through puberty.  Everything was normal,

even the growth spurt, but it was a FHS type of growth spurt, he's

still 4 foot 6 inches or so-- but again, Jeff and I are only 5 foot 3.



THe awful thing about this with boys, according to another mom I"ve

talked to and from my own experience, are the "rages".  Crazy,

out-of-control madness with aggressive behavior.  These seem to start

with the boys around the age of puberty, and, like other FHS traumas,

seem to be linked to something changing suddenly like plans, it being

too long between meals, or excessive tiredness.  More on this???



Life Expectancy-- SO far our oldest member is 36 and she's doing well

except for some more hearing loss.  She isn't able to pass the

driver's test although she can drive, and doesn't yet have a job.  She

loves to cook and help around the house, do  Bible studies and volunteer.



I hope all of you are well.  Deana