hi! i have 4 grown kids, and 3 of them have sticklers, like their dad.
my youngest daughter katie had a cleft palate with pierre rabin and
sticklers which was diagnosed at birth. my middle son and daughter were
not diagnosed with sticklers until they were several years old. my
oldest son does not have any of this. i agree with you about having to
"fight" for treatment , so to speak, for your kids. i would suggest that
you find a different audiologist if possible... has he had ear tubes
yet? katie had tubes put in twice, her dad had tubes several times
because of blockage and scar tissue. does your son "babble"" in his
speech? can he hear you whisper to him if your standing behind him and
he doesn't know it? that was one of the signs of my kids dads doctor had
when he was very young that he couldn't hear. good luck to you!--- In
sticklersyndrome@yahoogroups.com, Jennifer Oliver
<jennifer.worley.oliver@...> wrote:
>
> No, I in no way was attacking you.
> I am experiencing Ians audiologist NOT WANTING to give him hearing
> aids until "hes ready for school".
> And I am NOT accepting that. He is 17 months old and will only say 1
> word and he hasnt even said that in 2 months now.
> I was thinking she doesnt wear glasses because her vision dr didnt
> want to give them to her UNTIL she was ready for school.
> I am heavily involved in young childrens needs here and I have heard
> SO MANY horror stories of the Drs not wanting to help young children
> "until they are ready for school".
> I am experiencing that myself with his hearing aids.
> And its a shame when Drs do that, since Children can be behind.
>
> Sorry for the confusion!
>
> On Sat, Apr 18, 2009 at 9:54 AM, Jennifer Ahlman
> jenraylay@... wrote:
> >
> >
> > ok let's not start attacking each other you don't know my daughters
medical
> > history. Araya only wears her glasses for school and layni never
shows signs
> > of vision problems. I always do what's right for my girls And resent
the
> > thought that I wouldn't and unless you are her doctor or parent you
don't
> > know what's best for them.
> >
> > --- On Fri, 4/17/09, Jennifer Oliver jennifer.worley.oliver@...
> > wrote:
> >
> > From: Jennifer Oliver jennifer.worley.oliver@...
> > Subject: Re: [Stickler Syndrome ] hELP!
> > To: sticklersyndrome@yahoogroups.com
> > Date: Friday, April 17, 2009, 1:40 PM
> >
> > My son had his first laser eye surgery (to tack the retinas in place
> > since his gel in his eyes have already liquified) when he was just
> > turned 1 year old, had it again in February 2009, and is scheduled
for
> > another one in July. Since Stickler's patients have a VERY high
> > probability of retina detachment and since he is so young and cant
sit
> > through a retina exam, his Dr does a gas sedation on him at the eye
> > hospital in Birmingham to do a complete exam on him.
> > Ian started out at -12 at 6 months old and is now -18 (new Rx 3
months
> > ago)..
> > We are in the Huntsville, ALabama area.
> >
> > I am proactive about my son having glasses, my poor baby at 3 months
> > old when he started holding things, held them ALL THE WAY up to his
> > eyes in order to see anything.
> >
> > He has had 3 pairs of glasses now, and this new RX, he hasnt even
> > SCRATCHED the lens he NEVER takes his glasses off unless hes sleepy
> > and is tired and ready for bed.
> > IMO, I wouldnt wait on getting my daughter glasses if she needs them
in ANY
> > way.
> >
> > Ian hasnt gotten a hearing aid yet since his High Frequencies are
> > good, his speech levels arent though. So he is really delayed in his
> > speech, hence the speech therapy every 2 weeks.
> > I am trying to learn ASL to assist his speech development or at
least
> > his communications.
> >
> > Jennifer
> >
> > Jennifer.Worley. Oliver@gmail. com
> >
> > On Fri, Apr 17, 2009 at 8:29 AM, Jennifer Ahlman
> > jenraylay@rocketmai l.com> wrote:
> >>
> >>
> >> my older daughter has alot of renal problems do you know if that
is
> >> common?
> >> My younger daughter will have to have more repairs for her cleft as
she
> >> has
> >> alot of trouble with speech. They also say that my older may need
knee
> >> replacements by 12. What kind of eye surgery has your son had? My
girls so
> >> far are only mildly nearsighted Araya (older wears glasses) Layni
doesn't
> >> yet but may need them in the fall when she starts pre-school.
> >>
> >> --- On Thu, 4/16/09, aprilflowers718@ yahoo.com <aprilflowers718@
> >> yahoo.com>
> >> wrote:
> >>
> >> From: aprilflowers718@ yahoo.com <aprilflowers718@ yahoo.com>
> >> Subject: Re: [Stickler Syndrome ] hELP!
> >> To: sticklersyndrome@ yahoogroups. com
> >> Date: Thursday, April 16, 2009, 9:43 PM
> >>
> >> My son will be 3 in july. He had a very complex heart condition. He
was
> >> just
> >> showing a lot of joint weakness not so much complaining of pain!
His
> >> hearing
> >> loss is mild but he does wear hearing aids and has had a few eye
surgeries
> >> and has to have his circumcision re done in may
> >> Sent from my BlackBerry Smartphone provided by Alltel
> >>
> >> -----Original Message-----
> >> From: Jennifer Ahlman jenraylay@rocketma i l.com>
> >>
> >> Date: Thu, 16 Apr 2009 14:38:49
> >> To: <sticklersyndrome@ yahoogroups. com>
> >> Subject: Re: [Stickler Syndrome ] hELP!
> >>
> >> my older daughter had open heart surgery to repair a ASD and my
little one
> >> had A cath lab to repair a PDA I have told they both god blessed
them
> >> because they were born "holey" how old is your son? My girls don't
have
> >> hnearing loss yet but I have heard it is common they both are seen
by
> >> sveral
> >> doctors. does your son have alot of joint pain my seven almost 8 yr
old
> >> has
> >> knee pain
> >>
> >> --- On Thu, 4/16/09, aprilflowers718@ yahoo.com <aprilflowers718@
> >> yahoo.com>
> >> wrote:
> >>
> >> From: aprilflowers718@ yahoo.com <aprilflowers718@ yahoo.com>
> >> Subject: Re: [Stickler Syndrome ] hELP!
> >> To: sticklersyndrome@ yahoogroups. com
> >> Date: Thursday, April 16, 2009, 9:31 PM
> >>
> >> It is quite a process. My son has had open heart surgery as well as
> >> hearing
> >> loss and vision impairments and now am working on physical strength
in the
> >> lower extremeties with braces on his feet
> >> Sent from my BlackBerry Smartphone provided by Alltel
> >>
> >> -----Original Message-----
> >> From: Jennifer Ahlman jenraylay@rocketma i l.com>
> >>
> >> Date: Thu, 16 Apr 2009 14:27:56
> >> To: <sticklersyndrome@ yahoogroups. com>
> >> Subject: Re: [Stickler Syndrome ] hELP!
> >>
> >> Hello crystal,
> >> Both of my girls have sticklers ages 2 and 7 and I know what a
shock all
> >> this can be. As for diagnosis they haven't found the right mutation
in my
> >> girls genes yet so if the test comes back neg it dosn't mean he
dosen't
> >> have
> >> it just that they have found the right mutation yet. My younger
daughter
> >> was
> >> also born with a cleft palate and we had no idea anything was even
wrong
> >> untill she was born. She didn't have any breathing problems though.
Kids
> >> with cleft typically need ear tubes. My daughter is going through
speech
> >> theapy right now and making some progress. Also have to watch later
for
> >> eye
> >> issues both girls are nearsighted.
> >> I know this is alot to process. You have a baby thinks everything
is
> >> perfect
> >> and your world gets turned upside down. I know you'll be able to
pull
> >> through this just as I was.
> >>
> >> --- On Thu, 4/16/09, calientecrystal <calientecrystal@ yahoo.com>
wrote:
> >>
> >> From: calientecrystal <calientecrystal@ yahoo.com>
> >> Subject: [Stickler Syndrome ] hELP!
> >> To: sticklersyndrome@ yahoogroups. com
> >> Date: Thursday, April 16, 2009, 5:26 PM
> >>
> >> hI MY NAME IS CRYSTAL AND MY SON IS 24 hOURS OLD AND HAS BEIN
DIAGNOSED
> >> WITH
> >> STICKLERS, hE HAS A U SHAPED CLEFT PALLETE AND SMALL CHIN ETC. HE
IS ON
> >> BREATHING TUBES, HAD TO TAKE OUT FEEDING TUBE DUE TO BLOOD IN THE
STOMACH
> >> WHICH HAS STOPPED BUT THEY DONT KNOW WHAT HAS CAUSED IT. i;M A MESS
AND
> >> WOULD LIKE TO TALK WITH SOMEONE OR PEOPLE THAT HAS BEEN THREW THIS
AND CAN
> >> HELP ME GET THREW THIS TIME. ALSO ANY SUGGESTIOND ON HOW TO LAY HIM
SO HIS
> >> AIRWAYS WILL OPEN UP BETTER WOULD BE GREAT!!
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >>
> >
> > --
> > Jennifer Oliver
> >
> > [Non-text portions of this message have been removed]
> >
> >
>
>
>
> --
> Jennifer Oliver
>