Thank you all for the explanations- I really appreciate hearing about
this as we had never heard of Sticklers or known anyone with it. We
actually just got out of the hospital yesterday- my son has a heart
defect that are not sure is related to Stickler's but he is very very
thin- in the bottom 1% for his weight now- I was wondering if anyone
had any experience with feeding issues with a baby with Stickler's-
my son does not have a cleft palate but cannot seem to keep much food
down despite being on a feeding tube- the ICU Dr. mentioned that some
kids with Stickler's get diagnosed as failure to thrive- which just
scares me too much to even think abot for too long- and he is not
sure why. Thanks again for all the feedback- hopefully when my son
has his heart surgery, he will put on weight and we will be ready for
whatever comes next for him. Good luck to all of your children- they
are lucky to have such caring mothers. -Peggy

--- In sticklersyndrome@yahoogroups.com, abintra2004@... wrote:
>
> That was awesome, Jacqui!!! I agree that you have to let them be
kids.? That's first and foremost.? I will support Brennon in almost
anything he does, and with a strong faith in God, we can show our
kids that it's not as bad as it could be.? Brennon wasn't even
diagnosed with it as we didn't find out about it until he was 10, and
his Dad got diagnosed with it, (my ex) at the age of 32.? Funny thing
is, that when Brennon was? a newborn, I had the amnio done and
nothing showed up as abnormal..ripley's believe it or not.? He has a
cleft palette but not that noticable..it's really not that bad, but
bad enough. He hasn't even had that much joint pain until now..he's
really growing, and I think that started, too, this last surgery last
year, and they put him on Steroids..he went from a size 16 boys to a
size 38 men's in like 6 months..unbelievable! Anyhow, I'm here to
tell you, too, though, that our Stickler's kids are more mature than
any other kid their age.? They have to overcome so much and yet,
smile bigger than the sun.? It amazes me and their stregnth is what
keeps me going.. ;-) Love ya'll, Val
>
>
> -----Original Message-----
> From: Jacqui <momofbksa2001@...>
> To: sticklersyndrome@yahoogroups.com
> Sent: Wed, 21 May 2008 11:15 am
> Subject: Re: [Stickler Syndrome ] Questions about Stickler's, but
can't figure out yahoo messenger
>
>
>
>
>
>
> Hi Peggy
>
> My name is Jacqui. I have a son who is turning 2 on June 8. He was
diagnosed with Sticklers at birth. We got the official dx when he was
about 1. We knew because his father has it.
> Samuel was born with the facial characteristics of Sticklers. He
also failed the newborn hearing test. We then took him for further
hearing testing at the childrens hospital. He didnt pass there
either. We found out that he has a mild low frequency hearing loss
that is sensorineural. Which means its permenant. We have frequent
hearing tests. Although he has a hard time with low tones, he was a
little slow talking. Now that hes about 2, he is starting to talk
more. Hes not where he should be but I get lots of support and help
through various organizations for him.
> He has joint problems since about 1 month old. He has developed
joint pain and now on Naprosen for pain. He has grown up very well
though. Hes active and happy. He loves everything and everyone. Hes
such a lovable baby.
> In Jan of 08, Samuel kept running into the walls and tripping over
the carpets and toys and whatever else that was around. I took him to
the eye doctor and he went from a +1 to -4 in both eyes. He wears
glasses now. He still has a hard time but figures things out. I took
him to a retinal specialist 2 hours away from me. That doctor told me
the vitrius jelly in his eye is starting to thin out. This is not
good cause it will end up that the inside of eye would start jiggling
around and can cause some problems. Hes in for some bumpy roads
ahead. we all are.
> Samuel is smart. He has no idea he has problems. He just loves
everything.
> I know that in the future he will have more problems and he is in
the pre-arthritus stage at 2. Im sure his bones will deteriorate
sooner than normal for Sticklers.
> It just proves that every person has different issues with
Sticklers.
>
> One thing in common though, the Stickler kids are so well balanced.
ITs hard to go through things like that and not understand. Somehow
they are happy and thrive very well.
> Val's son Brenon is a great kid and doing great things in his life.
It does help when the parents allow them to be kids though.
> I hope we can all offer some support to eachother. Val has done
wonders for me too. She has offered me some words of wisdom and
inspiration.
> THere are not very many children especially younger toddlers that
has Sticklers. I dont know anyone else outside of this group and my
ex's family who even knows what Sticklers is. Our doctors dont know
much more than me.
>
> Welcome!
> Jacqui and Samuel
>
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