Marianne,
Thanks for sharing with us. I know for me anyway that any story or information
hits close to home with me. I have come to realize that no matter how old or
young you are, its never easy for the person with Sticklers or their family. My
son who is 20 months old has Sticklers. We knew when he was born cause his
father has it also. My question to you is did your son suffer with joint
problems as a baby/toddler? My son was born with Arthritis and joint problems. I
cant seem to find anyone who has experienced this with anyone at such a young
age. All of the information I have read or heard about, the joint issues plays a
part in your 20's or later. So far Samuel (my son) has joint popping and hes on
medication for the pain of the joints locking up and getting out of place. He
barely sleeps because of him being uncomfortable. Also, how did you know about
the Scoliosis? Samuel has 2 vertabrae not fused together right. I was told it
was a congential abnormality.
So many questions I have. Not enough time to write them out.
Thanks again
Jacqui




Hi Everyone, My name is Marianne and I'm 37 yrs old with Sticklers and
Pierre Robin Syndromes, I also have a 16 yr old son Mike who also have
both Sticklers and Pierre Robin. I was born with a cleft palate and
later found to have a hearing loss, things went well for me until the
past 10 yrs or so when the bone problems started. In the past 3 yrs I've
had both hips andboth knees replaced and just before christmas last yr I
had to have the lower part of my spine fused, I'm slowly getting back on
my feet. Mike has had a bit more of a rough time with things, he was
also born with the cleft palate and the hearing loss, he was involved in
early intervention programs as a young child, he's now in Yr 11 and
doing really well. He has had to have his right leg lengthened and
screws put in both ankles to stop the growth plates from working over
time, we're currently keeping a very close eye on his ankles as it seems
the problem with his ankles is coming back. In 2006 Mike had a major
operation on his back for Scoliosiskyphosis where the doctors put 2
titanium rods down his back with a few screws and wores to hold
everything in place. He plays sports with school and tries to do what
the other kids are doing but knows he has to modify thing slightly
sometimes.

As a parent I find it so hard watching Mike go through the operations he
has knowing that in some ways I'm the cause of it because it comes from
my side of the family, I know it's the wrong thing to think but
sometimes my mind likes to do things on it's own ... lol.

Unlike alot of people in this group I'm from Australia, Mike is a
patient at the Royal Children's Hospital in Melbourne where we both see
a Dr Ravi Savarirayan who has a special intrest in Sticklers. It would
be great to talk to other parents of teenagers but it seems most parents
on here have younger children. If any familes wish to know what might
be instore for them as their children get older I'm more than happy to
talk to them.






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Blaine 14 Incoming Freshman
Kelly 13 Freshman also....ADHD, OCD, ODD crazy kid
Shelby 11 No problem child
Aliya 8 glad she isnt the baby anymore
Samuel 1yr(June) Sticklers Syndrome, hes a great baby and I would never want
any other baby.



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