Re: Question for RSS people who are parents of average sized children--For Laurie

[Guest guest]

- Thank you so much for writing!!!! It is always comforting to

read emails like yours (despite all the problems you faced). When

the genetics doctor from Cedar Sinai spoke to us at the convention 2

years ago (and met privately with the adults with RSS), one of the

things she talked about was the difficulty for those RSS adults who

are under, does anyone remember, maybe 4'6 " tall???, that the danger

comes from not having enough space between the , see, I can NOT

remember, but basically your breasts and pelvic area, for the baby

to grow properly. She would definitely recommend a good OB-GYN and

probably one that specializes in high risk pregnancies. I remember

Dr. Falk bringing this up in the discussion of growth hormone

therapy, talking to one parent who only wanted to use GH for a

couple years to get their daughter to 4'10 " tall or greater - and

Dr. Falk talking about it being more conducive for child bearing to

be 4'10 " or taller as well.

I do remember her talking about the variety of possible

genetic " ways " of an embryo getting RSS. But I also remember her

talking specifically about our daughter, who is NON-matUPD7 (meaning

she correctly has 1 Chr 7 from mom and 1 from dad) but has a skin

biopsy indicating markers on 6% of her cells. In a nutshell, she

said something to the effect that the chances of having a

newborn with RSS were slim to none. But that may run a

higher than normal risk of miscarriages -- she was drawing the 64-

cell division thing, and explaining that if passed RSS on to

an embryo, it would be early in the cell division (whereas

probably developed RSS late in the 64-cell division). Occuring

early in the 64-cell division would place the embryo at signif risk

of subsequently miscarrying very early on.

I know this is somewhat vague - I can't remember everything.

Because in the end, she said by the time is ready to have

children, genetics will be so advanced we'll probably have all the

answers by then! Jenn

> > > Hi....I usually read but do not post on this web

> > site. I have RSS

> > and

> > > I have an average sized son. He is 9 going on 10

> > years old and yes

> > > taller than I already. The one question I have is

> > do any people

> > with

> > > RSS have children with problems putting on weight?

> > I know that as a

> > > RSS person as a child I could not put on weight,

> > and I am concerned

> > > that has been passed to my son. He eats very

> > well, very healthy,

> > but

> > > he is skinny. I would like to hear from other

> > parents. We have had

> > > testing done on him, found no reason why he is

> > like it.

> > >

> > > Laurie

> >

> >

> >

> >

> >