Posted by Becky on 1/14/2008, 10:56 am, in reply to "Re: PRS in more than one child?"
98.21.39.202
Is your family's PRS caused by a genetic syndrome? It sounds to me like you guys have a lot of other symptoms. The symptoms of PRS are a recessed chin, cleft palate, and sometimes a "floppy" tongue. Its a sequence of events. Now alot of times PRS can be caused by a genetic syndrome... thus adding a lot more symptoms. But those symptoms wouldn't be part of the actual PRS. Do you follow me?
Carleigh only has the recessed chin and had a cleft palate at birth. Eyes & ears are fine so far. (tested for Stickers) I am curious about the short part. What do you mean by short? Abnormally or just slightly? Sorry to ask so many wierd questions. I just want as much info as I can get from real people... not just what the doctors say!
--Previous Message--
: Sorry I just want to mention that PRS isn't
: ALWAYS passed, but it definitely can be.
: Some people happen to have it for no reason,
: but sometimes, as with my biological family,
: it can be passed on. There are four
: children from my birth-father that have
: various symptoms of PRS, one of us only has
: a short stature and is hard of hearing, I
: have the receded jaw and other problems but
: no hearing issues or speech problems, my
: brother and other sister have all of the
: problems we were informed of. He wears
: hearing aids and has trouble with his
: speech. The father is like me but with some
: speech problems.
: I hope your future babies are healthy Like
: I said, I don't want to scare people, I just
: want to not "sugar coat" it as
: requested.
:
: --Previous Message--
: I don't want to scare you or anyone else,
: but
: being 22 with PRS I can tell you that this
: is genetic. My biological father has it....
: and three of us kids have it. It is
: definitely not isolated.
:
: --Previous Message--
: I have 4 kids. My youngest, a daughter, was
: born with PRS. We assumed it was isolated,
: if only because we have 3 sons, all of whom
: were healthy pregnancies and babies. When
: she failed her newborn hearing test twice,
: the hospital sent a geneticist to talk to us
: about Kate and the boys. They asked tons of
: questions (odd ones...how tall we were, all
: our siblings, their eyesight, hearing...all
: sorts of stuff), and ended up testing her
: for Stickler's. The test took a few days,
: and came back positive for Sticklers type 2.
: We had no idea where it came from, who's the
: carrier, or if any of the boys are. The
: important thing for us is that we know, and
: the boys will know.
:
: The more you know, easier it will be to go
: forward. If you want another baby, get as
: much information as you can, the go for it!
: You're lucky. My daughter was hospitalized
: for 80 days, ended up with a trach, and
: feeding tube. If she wasn't my 4th and I
: wanted more, I'm not sure I could go that
: route again.
:
: --Previous Message--
: My daughter who is now almost 11 months old
: was born with PRS and they are considering
: it isolated so far. We've got her eyes
: checked at 5 months and everything appears
: normal so far. The geneticist told me that
: it may be caused by her position in my womb.
: I am soo scared to have another baby. The
: emotional and physical stress makes me just
: want to call it quits. I love her soo much
: and seeing her grow and develop makes me
: want another so bad, but I don't know if I
: could handle bringing another baby in this
: world and take the chance of it having to
: suffer. My daughter's case hasn't been that
: bad. She didn't need a trach or tube, just a
: palate repair and tubes at 10 months.
:
: The hardest part is the constant fear in the
: back of our minds about possible genetic. I
: want to know the truth... NO SUGAR COATING!
: Has anyone else been told its isolated, but
: have had repeated children with PRS? Does
: anyone else no of any causes (besides
: genetic)that can cause this! Thanks so much!
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