Hi Deborah,
My name is Mandy and my son Dean has been wearing glasses and
hearing aides since he was approximately 4 months old.  Dean also
did the birth to 3 program and then went to early intervention head
start.  I believe it was Tony who recommended that we get Dean the
solo bambini's.  They came from San Fransisco and we had the lenses
put in here in florida.  They aren't all that attractive, but you
can literally run them over with a car and they will not break.
These can be found online.  When you are purchasing glasses always
tell them you need the temple cables.  These are the arms that wrap
around the ears and will help keep the glasses in place.  With Dean,
the nosepads would smack into his eyes everytime the glasses moved
around on his face.  As Dean has gotten older he can now
wear "regular" glasses with nose pads in them, I tweak them myself
(I know, I know, BIG No-No).  I also learned that when I buy him new
glasses to ALWAYS buy 2 pairs of frames!!! Frames are discontinued
so quickly these days and when the arms get broken they never have
frames that we can switch the lenses into.  Everytime Dean got
frustrated he would rip the glasses off and throw them across the
room.  As far as getting him to wear the glasses we just kept
putting them back on...it took probably like 6 months before he
would forget that they were on his face.  Now days I have to fight
him to take them off to go to bed at night.  I have finally given up
and just sneak in when he is asleep and put them up then.  The
hearing aides took longer to get used to and I only let him wear
them to places like church and grandmas.  The school district bought
him a set to wear while at school.  I pay $1000 out of pocket for
these (each one) and can't afford to have them get wet or lost.  I
hope this helps you a bit!  And I would love to see this group get a
bit more active.
Mandy
mommy to Mackenzie (age 9), Lil' Dean (age 6) Pierre-Robin and
marshall syndrome, and Shelby Lyn (age 2)

--- In MarshallSyndrome@yahoogroups.com, Deborah Hatfield
<debhat70@...> wrote:
>
> Dear Michel & Aaron:
>  
> I am sure that I will need advice getting James to wear his
glasses.  I know he will need them as he often brings things very
close to his face to look at them.  He did pass his newborn
screening, but I believe he is hard of hearing. 
>  
> As far as his development, he seem to be ontrack for everything
except speech.  He is now cruising around the furniture, but not
walking, and is actully a little ahead of where our daughter was at
this age.  He was "army crawling" at ten months, but didn't
crawl "regularly until 11 months.   He is working with a Birth to 3
program and they have a speech therapist come out 2x a month to see
him.  He is only making vowel sounds, even though he has an
obturator.  His therapist says that he is so focused on his motor
skills that he isn't really focused on his speech, but it will come.
>  
> James is currently in continuous motion and we cannot get him to
sit still, except very briefly.  He is eating very well.  Even when
he started wearing the obturator, it didn't interfere with his
eating.  He has five teeth, two on top and three on the bottom.  The
two on top are not the middle two(unless they came in very far
apart), and I am worried that he is missing some teeth, as children
with James' condition are sometimes missing the "second" teeth on
top which make the middle teeth come in very far apart.  He sees his
pediatric dentist on October 28th and she will take a small x-ray to
see if all the tooth buds are there.
>  
> How did you get Lalo to wear glasses?  And how do they fit?  James
has a very flat nasal bridge and prominent eyes, and I just don't
see how glasses will work.
>  
> Ddeb.
>  
>  
>  
>
>
> --- On Wed, 9/24/08, aranda.michel <aranda.michel@...> wrote:
>
> From: aranda.michel <aranda.michel@...>
> Subject: [MarshallSyndrome] Re: (unknown)
> To: MarshallSyndrome@yahoogroups.com
> Date: Wednesday, September 24, 2008, 1:09 AM
>
>
>
>
>
>
> Hey Deb,
> We live in Southern California, in San Pedro, south of L.A. it
> is cool how close their birthdays are!
> Although he does not have a cleft palate, it does seem a little
> high, and Lalo's gums seemed thicker than normal. he didn't get
his
> first tooth until about ten months, and now has five.
> Lalo's features caught the attention of the doctors immediately
> at birth. Flatter nasal bridge, wider set eyes, short mandible,
and
> lower placed ears. So Chromosome and genetic tests were done right
> away. Both parents were also tested, but neither of us carry the
> gene! Lalo did not pass his initial newborn hearing screening, but
> returned a month later and passed. we continue to have his hearing
> tested regularly. It took a few tries, but an optomologist finally
> got a prescription, about a -20 vision, very nearsighted, but he
> really seems used to wearing his glasses. We cannot thank the
> founder of this group, (MacKenzie's Dad!) for help with the
> frustrating task of getting his glasses to sit right, and stay on!
> Looking back its been a crazy year, lots of work but lots of fun
and
> love too.
> Do you mind us askin about James development as far as speech,
> crawling, etc.?
> Michel & Aaron
>

Well, we had surgery in May.  Unfortunately, the doctor had to
completely take apart the first palate repair and re-do it.  There
was a 3 milimeter gap when the varangyl flap should have been closed
while Dean was speaking.  We go to Gainseville which is about 5 1/2
hours away.  When Dean had his surgery the genetics team was able to
sneak in the genetics testing, something about getting insurance to
pay for genetics testing is much easier when hospitalized than when
not.  Anyways, Dean's testing came back as being sticklers.
Dean "looks" way more Marshall's and I am not sure what all this
means.  However, I do know that the two syndromes are sometimes
thought to be overlapped and that there is a lot of controversy, so
needless to say, I will hopefully get to have lunch with Dean's
genetics team and try to make sense of all of this.  Otherwise, he
came through his surgery with flying colors and was released the day
after surgery.  By the time we got home, he absolutely refused to
take the tylenol 3 they sent him home on and I had to beg him to
take plain tylenol and motrin on a regular schedule.  It always
amazes me how resilient kids are!  His speech is much clearer and he
is able to make obnoxious noises now that he never could before!
Yayyyy!!  We go back to FSU at the end of October and will post the
results of that visit when it happens.
Thanks for listening!
Mandy
mommy to Mackenzie age 9, Dean age 6 (PRS and

WOW!
,
> We live in Southern California, in San Pedro, south of L.A.

        I have lived in San Pedro back in 1996, then moved to Torrance from '96 -
2000. I now live in the San Diego area :-) Moved here 6 months ago. From 2000
until
now I lived in 11 different places.

         Neat to have someone close considering people are from around the world
on
the internet!

Christy

Hey Deb,
      We live in Southern California, in San Pedro, south of L.A. it
is cool how close their birthdays are!
      Although he does not have a cleft palate, it does seem a little
high, and Lalo's gums seemed thicker than normal. he didn't get his
first tooth until about ten months, and now has five.
      Lalo's features caught the attention of the doctors immediately
at birth. Flatter nasal bridge, wider set eyes, short mandible, and
lower placed ears. So Chromosome and genetic tests were done right
away. Both parents were also tested, but neither of us carry the
gene! Lalo did not pass his initial newborn hearing screening, but
returned a month later and passed. we continue to have his hearing
tested regularly. It took a few tries, but an optomologist finally
got a prescription, about a -20 vision, very nearsighted, but he
really seems used to wearing his glasses. We cannot thank the
founder of this group, (MacKenzie's Dad!) for help with the
frustrating task of getting his glasses to sit right, and stay on!
Looking back its been a crazy year, lots of work but lots of fun and
love too.
      Do you mind us askin about James development as far as speech,
crawling, etc.?
Michel & Aaron

--- In MarshallSyndrome@yahoogroups.com, "Christy Hill"
<care4k9@...> wrote:
>
>     Michel, Aaron and Lalo! :-)
>
>        Sounds like you have had an incredible year! When is Lalo's
birthday?
>
>        Before I was diagnosed with Marshall's, I was at the
National Institute of
> Health because they thought I had Turner's syndrom. There they did
an MRI on my heart
> and said my heart was perfect. No problems. They said that women
with Turner's
> Syndrome (only in women) always have some heart defect and that
was when they said I
> couldn't have Turners and a team of other doctors said I was more
consistent with
> Stickler's since they just had a recent study the year before and
saw many people
> with Stickler's.  Thus the Marshall-Stickler's connection. But the
point is, with the
> MRI, they also injected dye, so they did a through exam of my
heart and said
> everything was good. So I'm not so sure if there are heart issues
with Marshalls. I
> also have a kidney disease which is unrelated to Marshalls.
>
>         Christy


>Hey Christy,
Lalo will turn one on October 18th. It is amazing how fast time
flies! We are throwing him a cowboy party, it is going to be a blast!
hope you have had a chance to check out some of the photos we posted.
Concerning his heart condition, his doctors wouldn't officially
label
it as a symptom of his Marshalls since there are so little cases
documented to compare to. But if it can help anyone else out, or
raise
any awareness at all, we do make mention of it.
Well its nice to hear from you, and hello to anyone else checking
in, thanks!
Michel & Aaron

Hey Christy,
     Lalo will turn one on October 18th. It is amazing how fast time
flies! We are throwing him a cowboy party, it is going to be a blast!
hope you have had a chance to check out some of the photos we posted.
Concerning his heart condition, his doctors wouldn't officially label
it as a symptom of his Marshalls since there are so little cases
documented to compare to. But if it can help anyone else out, or raise
any awareness at all, we do make mention of it.
      Well its nice to hear from you, and hello to anyone else checking
in, thanks!
                                     Michel & Aaron

Michel, Aaron and Lalo! :-)

        Sounds like you have had an incredible year! When is Lalo's birthday?

        Before I was diagnosed with Marshall's, I was at the National Institute
of
Health because they thought I had Turner's syndrom. There they did an MRI on my
heart
and said my heart was perfect. No problems. They said that women with Turner's
Syndrome (only in women) always have some heart defect and that was when they
said I
couldn't have Turners and a team of other doctors said I was more consistent
with
Stickler's since they just had a recent study the year before and saw many
people
with Stickler's.  Thus the Marshall-Stickler's connection. But the point is,
with the
MRI, they also injected dye, so they did a through exam of my heart and said
everything was good. So I'm not so sure if there are heart issues with
Marshalls. I
also have a kidney disease which is unrelated to Marshalls.

         Christy

Hello to all! It has been a busy first year, many ups and downs, it
has gone by so fast, it is hard to believe we are about to celebrate
Lalo's first birthday! We know it's been a while since our last
posting, and it is nice to see new faces! Again, our son Lalo was
diagnosed last year with Marshalls at 2 months old. Definitely a
trying time with lots of hard to answer questions, but as the year
has gone by, we are grateful for the help and support of Lalo's
doctors and nurses.This group is a good way to share experiences,
ask questions, and lend an ear.
              Lalo has facial traits associated with Marshalls, is
near-sighted and has worn glasses since he was three months, and
although he is quite responsive to sound, he continues to undergo
hearing tests. Tubes have been inserted to relive ear infections.
Lalo was also born with a heart defect called bicuspid aortic valve
but it is unclear if it is directly related to Marshall syndrome.
              Overall, we are happy with his development, he is a
really happy boy. Hope to hear from you guys soon.
                           Michel and Aaron
                        Lalo's mommy and daddy

Vickie,

> Thanks for sharing.  Time will tell how Nathan will do.
> Actually, I may have asked you this same question a year or
> two ago  J

        :-) If you did, I don't remember LOL!!!!!!!

Christy

Hey! Great we have discussion here! WHOO HOOO!!!

     Yeah, I have some of the facial features of Marshall's. I have extremely
narrow
hips, very short legs, but very long fingers and I have very broad shoulders.
I'm 5'
2" but my sister who doesn't have Marshall's is short too. But her proportions
of her
body are normal.

         My lower jaw is small and under developed, but lucky developed enough I
never
had any real problems other than impacted teeth that needed to be removed, but
as far
as chewing or function, never had a problem.

Christy

Vickie,

         I'm one of the fortunate ones with Marshall's that do not have severe
joint
issues. I would say I didn't get achy joints or soreness issues until I was
about 33
years old. I do get stiff now, but not what I read from folks who have
Stickler's. I
feel that I'm very fortunate. I'm not as bad off as others with this syndrome.
The
older I get now (I'm now 43) the more I noticed stiffer joints. I also noticed
that
damper climates are more of an issue.

         My biggest issue are my eyes.

Christy

Welcome Deb,

          This list gets very very little activity. Although people here call it
Marshall's Syndrome, I was told by National Institutes of Health that it is
Marshall-Stickler's Syndrome. That might help you learn a little ore about
connective
tissue issues. Some doctors argue that Marshall's is actually Stickler's but a
sub
category of Stickler's syndrome, other school of thought say it is just
Marshall's. I
find a lot of VERY closely related information from Stickler folks that relate
to
Marshal's.

            I was diagnosed with Marshall-Stickler's in 2002 when I was 37 years
old.
I have had a retina detachment and I'm hard-of-hearing. My one eye I see out of
has
retinal issues as well. I have a little joint issues but not too bad. I have a
high
arched palate, but not a cleft palate. I do have sinus issues. When I live in an
area
with humidity, I have issues. I just moved to San Diego area 6 months ago from
St.
George, UT. What I loved about St. George was the DRY weather and was better on
my
sinuses.  Here in San Diego, they have had an unusual humid weather and I have
had to
take Sudafed more often.

            I wish we could get a little more activity on this list, but it just
doesn't get much. Maybe you and I can just chat :-)

             Just feel fortunate that you were able to have James diagnosed at a
very
young age since I didn't know what the heck I had until 37.

             Christy

> -----Original Message-----
> From: MarshallSyndrome@yahoogroups.com
> [mailto:MarshallSyndrome@yahoogroups.com] On Behalf Of
> Deborah Hatfield
> Sent: Tuesday, September 16, 2008 9:28 AM
> To: MarshallSyndrome@yahoogroups.com
> Subject: [MarshallSyndrome] (unknown)
>
> Hi:  My name is Deb and my son James is 11 months old.  He
> has Marshall's.  I have just joined and would like to talk to
> other people and/or parents living with this condition.  We
> just had James fitted for an obturator (a mouth piece to
> close off his mouth from his nasal cavity) as he has a cleft
> palate that won't get fixed for a few months yet.  I'm just
> wondering what to expect in the future - there's not a lot of
> information out there, and my doctors are not very familiar
> with Marshall's.  Does anyone know of a doctor who
> specializes in it?  Any information would be sincerely appreciated.
>
>
>
>
>

Hey gang...anyone out there? Just kind of seeing who is out there since this
list
is soooooo quiet. Hope to chit chat a little bit with you out there who have
Marshall's syndrome!

     Christy

Wow! A message from this list!!!!

     I'm from Southern California too and have been living in the San Diego area
for 4 months. I'm a native of California, but grew up in Calabasas and then my
family later moved to Ventura county. Then I became a seasonal park ranger and
bounced around the whole country, then got a full-time job here in San Diego.

      I just wonder if I should reintroduce myself since there is really no
action on this list and people probably have long forgotten. I was diagnosed at
the National Institutes of Health (NIH) back in 2002 (when I was 37) with what
they call Marshall-Stickler's Syndrome. I guess it is just Marshals, but I
understand doctors debate over that.

        I wish we could get some discussion here! So quiet, we get lime a message
every three months.

Christy

Hi, I was going through my old email address' inbox and I came across
your email. I also live in SoCal and was diagnosed when I was 18months
old by Dr. Marilyn Jones (Radys Children's Hospital in San Diego) I'm
now 23 and doing well. I hope Lalo is doing great still! Mary Ann Crall
--- In MarshallSyndrome@yahoogroups.com, "aranda.michel"
<aranda.michel@...> wrote:
>
> Hello my name is Michel.I am from Southern California,and i'm the
> mother of three month old Lalo who has been diagnosed with Marshall
> Syndrome. After months of feeling overwhelmed with unanswered
> questions and very little support, I am excited and grateful to have
> come upon a community i can share my experiences with, reach out to
> for help, advice, as well as celebrate in the joy of raising our
> beautiful children...being new to the group i will naturally be
> checking in pretty often, and look forward to hearing from one and
> all!
>

Mandy,

congratulations on the success with the surgery and speech!

Wow, who would have thought that Marshalls was that rare that your son
would be the only diagnosed case.

Good luck with the recuperation! How old is your son again?

Christy

Mandy,

          congratulations on the success with the surgery and speech!

           Wow, who would have thought that Marshalls was that rare that your son
would be the only diagnosed case.

            Good luck with the recuperation! How old is your son again?

Christy

Hello everyone!  My son, Dean had to have his palate completely taken
apart and redone last week (wednesday) and is doing VERY well!!  He
still talks a bit nasally, but nothing near how it used to be.  He had
the surgery done on last wednesday and we got to come home on the next
day.  I went back to work on tuesday and have him at my preschool with
me (I am a teacher).  I notice already that his speech is a lot better
when he is conversing with his friends.  A lot of compensations he was
making because of the short palate need to be unlearned, BUT I am
noticing that playing all day long with his friends seems to be working
better than ANY speech therapy he has had!! :)  Also, because we were
hospitalized for surgery, the genetics team was able get Dean's testing
finally approved through the insurance company.  If the results are
positive for Marshall's syndrome (which I am certain they will be) Dean
will be the only diagnosed case in Florida.  Very exciting stuff for
our genetics team.  I'm just so glad to finally be getting answers!

Mandy

Hi Michel,

        Glad your computer is up and running so you can participate again! I
would love to get a "little" activity going here. How is Lalo doing these days?

--
Christy Hill
A'Mickey
***************
http://home.att.net/~care4k9

Hi Mandy,

       You say that Dean doesn't see sign language well, but what about tactile
sign language? Years ago I went to the Deaf-Blind conference and it was amazing
the different ways of communicating. It is SOOOO crucial to get that language
development at a very early age...which I'm sure you know, but more crucial when
they are younger than older. Young I mean infant. Five years old is consdiered
old in early language development :-)

       SOrry about the catarcts...I had cataract surgery when I was 13 and then
the other eye when I was 33. Amazing of the technology for cataracts 20 years
later.....it is wonderful that I still see 11 years after the surgery with the
high myopia and retinal deterioration. My eye is hanging in there...I only see
out of one eye!

         I hope Dean's cataract surgery is GREAT success and he does see 20/20, I
can only see about 20/60.
--
Christy Hill
A'Mickey
***************
So. Utah (soon moving to San diego
area)
IAABC-SAC Assoc. #143
APDT #67371 (second number)
IAADP
CGC Evaluator
http://home.att.net/~care4k9

Hi everyone, I haven't been here in a LONG time, sorry.  Anyways, my
son "little" Dean has prs and marshall's syndrome...he is 5 and in
kindergarten.  We are having a second palate repair soon to clear up
his speech.  We just went to the opthamologist and he found cataracts
in both eyes.  The doctor did say that when the cataracts are removed
that Dean's vision will be close to 20/20...this is very exciting news
as Dean's vision is currently at 2100/20!  Dean also wears hearing
aides.  The result of the unclear speech, partial deafness and not
being able to see to sign is that Dean will have to repeat
kindergarten this year.  This isn't so bad since his 5th b-day was on
the first day of school and his new speech therapist (at school) was
wonderful to contact his a therapist who specializes in children with
clefts!!  We go to gainseville next thursday and hopefully will know
when his cleft surgery is.

Mandy, mommy to Dean

Hi Michel,

         WELCOME! Wow, I didn't get diagnosed with Marhsall's until I was 36
years old. What advantages you have to know from early years to know how to help
your child rather than going through the frustrating maze of having a child with
a condition and you don't know where to start!

         I've been taught that Marshall's syndrome is really a sub catagory of
Stickler's...some will argue, but it was the National Institutes of Health that
told me that it is "Marshalls-Sticklers' Syndrome." This is a connective tissue
condition. I consider myself rather mild, but I have a high cleft palate,
hard-of-hearing and had many years of eye problems. I lost my vision in my right
eye at 17, it deteriorated over the years and last year July I had my right eye
removed due to the pressure building up and the pain. IT was the best thing
since the prosthesis looks WAY better than my eye. People can't tell, it is a
glorious thing!

         I do get joint achyness and soreness, but if I lay off the processed and
human made products, then I do pretty well. There is still so much to learn
about Marhsall's and I just love it when I read about someone here because there
are not many of us. THis list is rather quiet and wish we had more activity.
Maybe you are the spark to get it going!

         I"m now 43 and have done well, I have gotten a B. S. degree in zoology,
have had very exciting jobs from being a veterinary technician, to working in
wildlife to being a park ranger to getting a teaching credential to teaching dog
training classes to now going to work in a federal investigative job. Lalo has
the ability just like many other folks.

          How did you determine at such a young age that Lalo had Marshall's???

Christy