hi
i have 4 kids,1 with sticklers and cleft palate with pierre robin.  3 of them
has sticklers, 2 of them with all the eye problems and arthritis, my oldest son
has no sticklers or anything else. it is interesting to me that one syndrome can
have so many characteristics. my oldest daughter also has a funny double beat in
her heart, which i've never gotten a satisfactory answer for, altho she's had
many ultrasounds no one is really telling me if it's a heart murmur, or a
possible mitral valve prolapse or what.


A good friend will bail you out of jail, a true friend will be in there with you
saying, Damn that was fun!!

--- On Thu, 8/7/08, val575 <no_reply@yahoogroups.com> wrote:

From: val575 <no_reply@yahoogroups.com>
Subject: [Stickler Syndrome ] Re: New to this group...Debbie
To: sticklersyndrome@yahoogroups.com
Date: Thursday, August 7, 2008, 12:39 PM






Hi,

My son had a trach tube put in when he was 3 days old because of his
tongue. He kept swallowing it and it would affect his breathing and at
the same time he had a feeding tube put in because he wasn't able to
suck on the special feeding nipples they had...but thank god to the
makers of the Haberman bottle because all my boys used it and it
worked perfect..... I do have a question to anyone who has dealt with
sticklers all my boys (3) 13,9 & 3 have each been different. My oldest
had the cleft with the hard and soft palates and my middle son had
just the soft palate and well my youngest he has what they call a sub
mucus cleft. Now it has been a journey with all but it just seems so
strange to me that each one of them go to the team visits together
they see the same doctors but my oldest see's knee specialist, eye
specialist, my middle son see's a heart specialist for heart issues
from sticklers and an ear specialist and my youngest he well he just
has vision problems right now that we know of it is just so darn
strange that they all have a different kind of sticklers but it is
sticklers can anyone tell me if they have had a couple of kids with
sticklers that has experienced different issues with each?

--- In sticklersyndrome@ yahoogroups. com, Debby Collins
<caliroze2002@ ...> wrote:
>
> hi,
> katie had the tongue adhesion because of the pierre robin, her
llower jaw was just too small for her tongue to lay comfortably in...
her father had had the same surgery as an infant.
> i can understand shaun not having another surgery. before katie got
her braces put on the orthodontist suggested katie have bone taken out
of her hip to extend her lower jaw, and she said no to that.
> I'd like to know if any other children with pierre robin had the
tongue adhesion, if any one else has please let me know, thanx
>
>
>  
> A good friend will bail you out of jail, a true friend will be in
there with you saying, Damn that was fun!!
>
> --- On Mon, 6/23/08, Mario Fedele <mario55o@.. .> wrote:
>
> From: Mario Fedele <mario55o@.. .>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
> To: sticklersyndrome@ yahoogroups. com
> Date: Monday, June 23, 2008, 4:15 PM
>
>
>
>
>
>
> Debbie,
>
> Well, I'm glad that I won't be ruining the story for you with all
the disclosures I'm making.
>
> In our case, we had never heard of Stickler's syndrome till my son
was diagnosed with it, so I'm not sure how that came to be.
>
> That's quite a lot Katie had to undergo before she could have her cleft
> repaired. I've never heard of the tongue being "tied" to the bottom
> lip. That's a new one on me.
>
> Surprisingly, the flap for Shaun did not create snoring. It just didn't
> produce proper closure. They wanted to do a third procedure but offered
> no guarantees on the results that would be gained, so we passed on it.
>
> Mario S. Fedele
> God's Gift - A touching memoir of overcoming insurmountable odds!
http://www.freewebs .com/mario5o/ http://www.champagn ebooks.com/
http://www.myspace. com/mario5o http://www.bestbook deal.com/
book/compare/ 1897261888/
>
> --- On Mon, 6/23/08, Debby Collins <caliroze2002@ yahoo.com> wrote:
> From: Debby Collins <caliroze2002@ yahoo.com>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
> To: sticklersyndrome@ yahoogroups. com
> Received: Monday, June 23, 2008, 9:54 AM
>
> good morning,
> katie's
> scoliosis is mild, my spine looks like a question mark in x-rays, they
> found it when i was 18 and it was too late to do anything about it
> cause i quit gaining height at 12 years old ( i'm 5'1'') we both have
> the constant lower back pain.
>
> believe me, i'll still read your book, i'm a research junkie,lol,
> especially on the cleft palate and sticklers. does the cleft or
> sticklers run in your family or did it come out of the blue for u? we
> were given misinformation with my first pregnancy, we were told that we
> had a 1 in 5 chance of having a child with a cleft and that the chances
> lessen with each pregnancy, u can imagine our surprise when katie was
> born, with all my babies as soon as they came out and the dr told us
> what they were, i asked if they had a cleft, and with katie it was and
> we were extremly shocked, thats when they finally had us talk to
> geneticists' etc. and we found out what the odds really were...thats
> also when we found out about the sticklers. katie was a week old when
> they "tied" her tongue to her bottom lip and then when she was a year
> old they cut it loose and repaired her palate. she had her flap
> surgerie at 4, after shaun had the flap surgery, did her snore really
>
> really bad? katie did, we could hear her snoring all over the house,
> lol. it stopped after about a year, but boy it was loud while it
> lasted, lol.
>
> A good friend will bail you out of jail, a true friend will be in
there with you saying, Damn that was fun!!
>
> --- On Sun, 6/22/08, Mario Fedele <mario55o@yahoo. ca> wrote:
>
> From: Mario Fedele <mario55o@yahoo. ca>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
>
> To: sticklersyndrome@ yahoogroups. com
>
> Date: Sunday, June 22, 2008, 10:48 PM
>
> Debbie,
>
> Katie and her dad really had a serious case of cleft palate it seems.
>
> I'm glad that speech therapy helped Katie. My son received therapy as
>
> well, but since he doesn't get full closure from the flap they put in
>
> place during his second surgery, air still escapes and that produces
>
> the nasal speech.
>
> I was not aware of the blood condition Katie developed.
>
> I'm just curious as to how far her scoliosis and yours have
progressed to.
>
> My son's went to 50 degrees and that is why the surgery was necissated.
>
> Even though the procedure was a success, he is still bothered by pain.
>
> I hope that I'm not revealing too much as I don't wish to spoil your
reading of my memoir.
>
> I agree with you about the fact that most doctor's are not aware of
>
> Stickler's, and yet it's supposed to be quite common, occurring in 1
>
> out of every 10,000 children.
>
> Mario S. Fedele
>
> God's Gift - A touching memoir of overcoming insurmountable odds!
http://www.freewebs .com/mario5o/ http://www.champagn ebooks.com/
http://www.myspace. com/mario5o http://www.bestbook deal.com/
book/compare/ 1897261888/
>
> --- On Mon, 6/23/08, Debby Collins <caliroze2002@ yahoo.com> wrote:
>
> From: Debby Collins <caliroze2002@ yahoo.com>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
>
> To: sticklersyndrome@ yahoogroups. com
>
> Received: Monday, June 23, 2008, 1:26 AM
>
> mario,
>
> katie
>
> had hard and soft palate cleft, her father had no palate at all and had
>
> many many surgeries ( he was born in '58) his parents fed him with an
>
> eye dropper which took several hours to do. Thank God for the special
>
> bottles 28 years later that we used for katie, lol.katie had speech
>
> therapy since she was 3, and her speech is really good.katie had a
>
> really crooked teeth, and a couple of row of baby teeth, she got braces
>
> when she was 13.She was supposed to get them earlier but got a blood
>
> disease ( not related to the sticklers or cleft palate that i'm aware
>
> of) called ITP, which is where her spleen looks at her platelets as an
>
> infection and destroys them, so when her platelets are low she has
>
> bruising and peticea ( can't spell, lol ) and her blood will not
>
> coagulate, so we had to put off the braces until she stabalized a bit.
>
> I tell u, this kid has really been put through the ringer!katie also
>
> has scoliosis, which i do also.i hope your son is doing well,
>
> laura seems to have the osteoarthrits more than the other 2, just like
>
> her dad. oh yeah, i forgot, their father also had another daughter (
>
> his oldest) who had a cleft palate with pierre-robin and sticklers. We
>
> lived in wyo. and we were told my kids and his daughter were the only
>
> ones with sticklers. i used to have to tell the doctors about it
>
> because most doctors arent aware of it. now my kids are old enough to
>
> tell them, and they get the same response, lol.
>
> Deb
>
> A good friend will bail you out of jail, a true friend will be in
there with you saying, Damn that was fun!!
>
> --- On Sun, 6/22/08, Mario Fedele <mario55o@yahoo. ca> wrote:
>
> From: Mario Fedele <mario55o@yahoo. ca>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
>
> To: sticklersyndrome@ yahoogroups. com
>
> Date: Sunday, June 22, 2008, 9:53 PM
>
> Debbie,
>
> I'm glad that my memoir has caught your interest.
>
> I'd love to hear what you think of it.
>
> My son, Shaun, was born with a cleft palate of the soft tissue, which
>
> required two surgeries. In spite of it, he still exhibits nasal speech.
>
> His teeth were also in bad shape, and he had to wear braces for
three years.
>
> He displays the long bone and large joints characteristics, as well.
>
> Though he had cataracts, we never had an issue with the retina.
>
> Sorry to hear that your daughter has lost the loss of her vision in
one eye.
>
> Your son sure had a lot of surgeries for his retinal detachment! I
hope he's all right.
>
> Now a days, my son is complaining of aches and pains, and we believe
it may be the onset or arthritis.
>
> It just seems that this syndrome has countless symptoms that keep
manifesting themselves at varying stages.
>
> Have your children had any issues with scoliosis because my son did
and required surgery for it?
>
> As to your testing concern, I can't offer any advice on it because my
>
> son's diagnosis was made on the basis of clinical observations.
>
> Mario S. Fedele
>
> God's Gift - A touching memoir of overcoming insurmountable odds!
http://www.freewebs .com/mario5o/ http://www.champagn ebooks.com/
http://www.myspace. com/mario5o http://www.bestbook deal.com/
book/compare/ 1897261888/
>
> --- On Sun, 6/22/08, Debby Collins <caliroze2002@ yahoo.com> wrote:
>
> From: Debby Collins <caliroze2002@ yahoo.com>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
>
> To: sticklersyndrome@ yahoogroups. com
>
> Received: Sunday, June 22, 2008, 11:56 PM
>
> hi,
>
> i'm definitly going to get your book... my oldest daughter, laura,
>
> still has some issues, fortunatly she'seither "grown out of" or finally
>
> learned to maintain her behavior, altho she still has her moments,lol.
>
> what was interesting to me is when she was 8 years old, we saw a
>
> geneticist and she was checking out all of my kids to see who had
>
> sticklers besides katie ( my youngest) and after she looked in laura's
>
> mouth she said that she had some cleft palate characteristics and that
>
> in her opinion she thought she was almost born with one.the kids father
>
> wasn't diagnosed until we had katie and then we knew he had it. they
>
> all have the long body, arms, legs, fingers, toes and receding chin.
>
> not to mention the arthritis and eye problems. laura has congenital
>
> cataracts, which so far have been slow growing and is myopic, she had
>
> her retinal detachment at 19, and had the "buckle" surgery within 2
>
> days, but she has lost the vision in that eye. my other son
>
> had 17
>
> eye surgeries before he was 18 due to detachments. laura is wanting to
>
> get pregnant and i'm not sure if katie will decide to have more
>
> children. i've tried to inform them of all the possibilities, without
>
> scaring them which is hard, especially after reading some of the
>
> letters from the people in this support group. i've read other posts
>
> from people on here who talk about genetic testing, which is something
>
> i don't know about. if anybody can tell me how that is done, i'd
>
> appreciate it.
>
> Debby
>
> A good friend will bail you out of jail, a true friend will be in
there with you saying, Damn that was fun!!
>
> --- On Sun, 6/22/08, Mario Fedele <mario55o@yahoo. ca> wrote:
>
> From: Mario Fedele <mario55o@yahoo. ca>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...Debbie
>
> To: sticklersyndrome@ yahoogroups. com
>
> Date: Sunday, June 22, 2008, 6:41 PM
>
> Debbie,
>
> You certainly have experienced much hardship due to Stickler's. I'm
overwhelmed by what you've gone through.
>
> My son is in the same age range as your own children. He's 26 now.
>
> His behavior was a great concern to us because he would strike out at
>
> others, so we had to find ways to contain that. He also had low
>
> frustration levels and was highly prone to temper tantrums.
>
> In addition, he had learning difficulties, so all his schooling was
done through Special Ed classes.
>
> I chronicle all these experiences in my memoir, and it's something
you might wish to look into.
>
> It's so wonderful to hear that your daughter had a child who is free
of the syndrome.
>
> Mario S. Fedele
>
> God's Gift - A touching memoir of overcoming insurmountable odds!
http://www.freewebs .com/mario5o/ http://www.champagn ebooks.com/
http://www.myspace. com/mario5o http://www.bestbook deal.com/
book/compare/ 1897261888/
>
> --- On Fri, 6/20/08, Debby Collins <caliroze2002@ yahoo.com> wrote:
>
> From: Debby Collins <caliroze2002@ yahoo.com>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...April
>
> To: sticklersyndrome@ yahoogroups. com
>
> Received: Friday, June 20, 2008, 11:05 AM
>
> hi!
>
> i have 4 kids,a son 25, daughter 23, another daughter 21 and a son
>
> 22... 3 of them have sticklers syndrome, which they inherited from
>
> their father, who was born with a cleft palate with pierre-robin
>
> sydrome and sticklers, he's had 10 knee surgeries due to
>
> osteoarthritis. my youngest daughter was born with the same and had a
>
> tongue adhesion at a week old and a repair at 1 year old and a revision
>
> at 4. my oldest son does not have any symptoms of sticklers. my other 2
>
> have had retinal detachments and osteoarthritis in their knee joints.
>
> my oldest daughter has also had severe behavioral problems, she was
>
> diagnosed ( finally ) with having oppositional defiance disorder and is
>
> bipolar, she was an angel baby until she was 3 and then the world
>
> turned upside down, i don't know how we survived all those years, she
>
> had temper tantrums that would last for hours. both my girls also have
>
> mild learning disabilities. i have looked in sticklers websites for
>
> years to
>
> see if behavior problems was part of sticklers, so i was
>
> really interested to see that your son had problems also. my youngest
>
> daughter just had a baby 10 months ago, and Thank God he was born
>
> without sticklers or a cleft palate, altho he does have kidney
>
> problems. As much as i would love to have more grandchildren it scares
>
> me to death that they would be born with sticklers, after reading the
>
> letters in this support group, i realize how lucky my kids have been
>
> not to have as many health issues as some of these kids have had, altho
>
> it seems as they get older the eye and joint problems are getting
>
> worse. if anyone else has endured behavior problems in their kids, i
>
> would love to know. i'm really glad i found this group because i have
>
> found so much that i didn't know.
>
> A good friend will bail you out of jail, a true friend will be in
there with you saying, Damn that was fun!!
>
> --- On Thu, 6/19/08, Mario Fedele <mario55o@yahoo. ca> wrote:
>
> From: Mario Fedele <mario55o@yahoo. ca>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...April
>
> To: sticklersyndrome@ yahoogroups. com
>
> Date: Thursday, June 19, 2008, 9:29 PM
>
> April,
>
> Though my son's hole in the heart improved entirely on its own as did
>
> his hearing, we still had to endure countless procedures for him.
>
> Those involved a vascular ring correction right at birth, cataract
>
> removal, two cleft palate surgeries, major teeth extractions, braces
>
> for three years, and surgery for scoliosis which developed in his early
>
> teen years.
>
> Over and above that, he experienced learning and behavioural problems,
>
> which required a lot of attention on our part, so we truly had our
>
> hands full.
>
> It was quite an ordeal that I ended up chronicling our experiences
in a book.
>
> I was fortunate, though, that during all this time, I, at least, had
my wife's support as well as that of family.
>
> You certainly went through a difficult situation of it by having to
face open heart surgery for your son all on your own.
>
> How is Ethan doing now?
>
> Mario S. Fedele
>
> God's Gift - A touching memoir of overcoming insurmountable odds!
>
> http://www.freewebs .com/mario5o/
>
> http://www.champagn ebooks.com/
>
> http://www.myspace. com/mario5o
>
> http://www.bestbook deal.com/ book/compare/ 1897261888/
>
> --- On Thu, 6/19/08, April Rondo <aprilflowers718@ yahoo.com> wrote:
>
> From: April Rondo <aprilflowers718@ yahoo.com>
>
> Subject: Re: [Stickler Syndrome ] Re: New to this group...
>
> To: sticklersyndrome@ yahoogroups. com
>
> Received: Thursday, June 19, 2008, 11:06 AM
>
> I am glad to hear that your son was spared open heart surgery.. It was
>
> the toughest most hardest I had went through and since my husband and I
>
> were separated at the time it was even harder because I had NO one for
>
> support! Glad that hearing loss cleared up as well..
>
> My son has the condition.
>
> At birth, it was found that he had a hole in his septum and that he
>
> might require surgery for it. However, it ended up closing by itself
>
> and so we were spared the procedure.
>
> My son also had some conductive hearing loss but that cleared up once
>
> the specialist was able to get tubes in his ears.
>
> At age two, he developed cataracts, which had to be surgically removed
>
> and then glasses were prescribed.
>
> He also has problems with his feet, as they greatly protrude
>
> >(*)<.~.>(*) <.~.>(*)<
>
> April
>
> waiting for spring
>
> with
>
> (^(^)^)
>
> \.|./
>
> sesm.}>o<{.sesm
>
> /.|.\
>
> >(*)<.~.>(*) <.~.>(*)<
>
> \/\/\/\/\/Ethan\ /\/\/\/\/
>
> ----- Original Message ----
>
> From: Mario <mario55o@yahoo. ca>
>
> To: sticklersyndrome@ yahoogroups. com
>
> Sent: Monday, June 16, 2008 8:43:33 PM
>
> Subject: [Stickler Syndrome ] Re: New to this group...
>
> April,
>
> Sorry to hear that your son was diagnosed with Stickler's syndrome.
>
> My son has the condition.
>
> At birth, it was found that he had a hole in his septum and that he
>
> might require surgery for it. However, it ended up closing by itself
>
> and so we were spared the procedure.
>
> My son also had some conductive hearing loss but that cleared up once
>
> the specialist was able to get tubes in his ears.
>
> At age two, he developed cataracts, which had to be surgically removed
>
> and then glasses were prescribed.
>
> He also has problems with his feet, as they greatly protrude outwards.
>
> I hope that things go well for your son.
>
> Mario
>
> --- In sticklersyndrome@ yahoogroups. com, April Rondo
>
> <aprilflowers718@ ...> wrote:
>
> >
>
> > My 22 month old son just diagnosed with Type 1 Sticklers. He has
>
> heart problems that required open heart surgery. Mild to Moderate
>
> Hearing Loss and Severe Myopia with a enlarged optical nerve. We are
>
> on high alert for retinal detachment. We are also watching his feet
>
> as they are turning in a little bit but they think he might grow out
>
> of it. We just got word that neither his father or I have sticklers
>
> so it was spontaneous which still makes me uneasy. I have a embryo
>
> that I was awarded in the divorce and I am concerned about the embryo
>
> having sticklers. I still have lots of questions and still have a
>
> hard time since this is a new diagnosis.
>
> > April
>
> >
>
> >
>
> > >(*)<.~.>(*) <.~.>(*)<
>
> >
>
> > April
>
> > waiting for spring
>
> > with
>
> > (^(^)^)
>
> > \.|./
>
> > sesm.}>o<{.sesm
>
> > /.|.\
>
> > >(*)<.~.>(*) <.~.>(*)<
>
> >
>
> > \/\/\/\/\/Ethan\ /\/\/\/\/
>
> >
>
> >
>
> >
>
> >
>
> > [Non-text portions of this message have been removed]
>
> >
>
> [Non-text portions of this message have been removed]
>
> ____________ _________ _________ _________ _________ _________ _
>
> Ask a question on any topic and get answers from real people. Go to
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