We have an 8 year old son, Nathan, who was diagnosed when
he was one year old with Marshalls. He has had hearing aids and contacts
since shortly after he was born.
Christy – I was wondering how painful your joint problems
were and if you can do or take anything to help the pain.
Nathan has had some issues with pain in his legs and he is seeing a doctor for
it. I am just curious, I know he is very young for this to have
started. He also has allergy/sinus issues periodically,
especially when the pollen count is high and in high humidity.
If either of you would like to email me directly, please use the
following email address – vickie.specht@....
Looking forward to hearing from both of you (and anyone else on
the list!),
Vickie
From:
MarshallSyndrome@yahoogroups.com [mailto:MarshallSyndrome@yahoogroups.com] On
Behalf Of Christy Hill Sent: Tuesday, September 16, 2008 9:57 PM To: MarshallSyndrome@yahoogroups.com Subject: RE: [MarshallSyndrome] (unknown)
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.
>
>
>
>
>
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...
Hi Deb & Christy (and everyone else)! We have an 8 year old son, Nathan, who was diagnosed when he was one year old with Marshalls. He has had hearing aids...
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...
Christy: Thanks for your reply. It is nice to know what James' condition is, so we can watch out for sight and hearing issues, but still hard not knowing...
Hi Christy and all: Thanks for your reply. It is nice to know what James' condition is, so we can watch out for sight and hearing issues, but still hard not...
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...
Christy, Thanks for sharing. Time will tell how Nathan will do. Actually, I may have asked you this same question a year or two ago :) . . .it is nice to...
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...
... birthday? ... National Institute of ... an MRI on my heart ... with Turner's ... was when they said I ... consistent with ... saw many people ... point is,...
Hi everyone: When my son James was born, then did a number of tests and determined that he had a bicuspic (?) aortic valve, but they also said that it was not...
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...
WOW! , ... 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...
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...
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...
Hi Mandy:  Thanks for the info. James also has Pierre Robin and Marshalls. When did they fix Dean's palate? And how is his speech now? Have you had...
Dean's palate was repaired on his first birthday...unfortunately we had to go to gainesville and have it taken apart and redone this past may. I wish I had...
Why did they have to repair the palate? Was it repaired incorrectly the first time? Is there anything I should be looking for as far a problems. And some...
The second repair was for speech issues...the varangyl (sp?) flap was insufficient. Basically Dean outgrew his palate. Unfortunately we only had 1 plastic...
Thanks for the pictures - your children are beautiful. James has a eye doctor appointment on October 23rd, so we will see what the Dr. says, and try to get...
CONGRATS!!! on the first year...it truly is the hardest one to get through. It should get lots easier as time goes on. You are taking James to a pediatriac...
Hi: How do the cataracts affect Dean's vision. And if he can't go to a regular eye doctor, who will he go to when he is an adult?  James sees a pediatric...
Hi, sorry its taken me so long to get back to you. James is so adorable....I hate to say it, but Dean wasn't that handsome as an infant. He has really had...
Hi Everyone: Mandy, I appreciate all of the information you gave me, and it sure sounds like you have a great medical team. We live in Northern Wisconsin so...
It sounds like we have very similar teams...ours is called the cranio-facial team so they don't just concentrate on clefts...but I think they make up the...
Hi: I was wondering if you could clue me in on what the recovery is like for palate surgery. How long before he can eat, pain management, etc. It makes us...
The first palate surgery was easier than having a feeding tube placed for Dean. The morning after surgery he was sitting up in an oxygen tent and playing...
Hello everyone:  James is walking!! 13 months old, so just about the same time as our daughter started. We are looking forward to our surgery consult on...
Having problems with message search?
Offline 
Send Email