OT: Marfan Syndrome

OT: Marfan Syndrome

Post by Kate Dice » Wed, 23 Jun 2004 18:11:28



Quote:

> My eight year old granddaughter is seeing a specialist because her regular
> doctor thinks she may have Marfan Syndrome.  He had mentioned the
> possibility of it several times when she was younger but did not feel the
> need at that time to pursue it yet.  Well, she has recently been having some
> back pains and they discovered she has scoliosis which it seems is quite
> common in children with Marfans.  He referred her to a pediatric orthopedic
> doctor who said she does have all the outward signs of Marfans so she now
> has to undergo a battery of various tests.  Basically Marfans is a
> connective tissue disease that affects many body systems, including the
> skeleton, eyes, heart and *** vessels, nervous system, skin and lungs.
> She is very tall for her age with long arms, legs and fingers and this seems
> to be a common characteristic.  Of course many children this age are long
> and lanky but she is more so than average.  She can also wrap herself up
> like some kind of a contortionist yet she cannot stand up and touch her
> toes. Apparently there are many things like this that go with Marfans.

> She had an echocardiogram last week and that looked OK except for a heart
> murmur so that is one test down.  She will also have to have genetic
> testing, eye tests and several other tests based on the results of these.
> Tomorrow is a big one for her - a Spect Scan which is a type of nucleur
> testing and will last all day.  She will be injected with a radioactive
> substance and later all her bones will be scanned.  I am taking off work to
> go with her Mom and her for this test as they are both understandably
> nervous about it and my son (her dad) is out of town on business.

> I am just hoping that I can be helpful and supportive for them both.  I know
> it is very *** my daughter-in-law as well as my DGD.  I remember well
> the feeling of having your child go through serious medical tests.  Right
> now my DGD is worried about the needle part of it as she will have an IV.  I
> am just hoping and praying that none of it is too difficult for her and that
> all results are negative.

> At any rate I'm rambling on about all this because I wondered if anyone here
> has any experience with Marfans Syndrome or knows anyone that has it?  I
> have never heard of anyone with this disorder before.  It seems to be a
> fairly rare disorder.  We could also use some prayers tomorrow if anyone has
> any to spare.

> Thank you all so much,

> Bonnie

I'm sorry to hear she has to go through all this.  Best thing is to keep
her well informed as to what is happening and why as she has the tests,
and anything you don't understand, ASK about!  How old is she?

Tell her from me that the IV hurts a little going in, but after that is
more a pest than a pain!  And the nuclear scan just means you have to
keep still!  I got chilly  lying there when I had mine before Christmas,
prior to having my gall bladder out.

Here's hoping the tests results are as good as possible, and that while
she may have the syndrome, she has as few of the effects as possible.  A
nice hand piecing project to share with her might be a good thing to do
while enduring all the waiting.

--
Kate  XXXXXX
Lady Catherine, Wardrobe *** of the Chocolate Buttons
http://www.FoundCollection.com/
Click on Kate's Pages and explore!

 
 
 

OT: Marfan Syndrome

Post by Dr. Quilte » Thu, 24 Jun 2004 01:02:00


Hope the diagnosis is negative. Don't worry about the radioactive test,
they probably use an isotope that is readily eliminated from the body.

Have you been to this site? http://www.FoundCollection.com/
Let me know if you need any help understanding the genetic basis for it.
I am a molecular biologist and I used to teach genetics to medical students.

PS: I've heard some people think Lincoln had it.

Quote:

> My eight year old granddaughter is seeing a specialist because her regular
> doctor thinks she may have Marfan Syndrome.  He had mentioned the
> possibility of it several times when she was younger but did not feel the
> need at that time to pursue it yet.  Well, she has recently been having some
> back pains and they discovered she has scoliosis which it seems is quite
> common in children with Marfans.  He referred her to a pediatric orthopedic
> doctor who said she does have all the outward signs of Marfans so she now
> has to undergo a battery of various tests.  Basically Marfans is a
> connective tissue disease that affects many body systems, including the
> skeleton, eyes, heart and *** vessels, nervous system, skin and lungs.
> She is very tall for her age with long arms, legs and fingers and this seems
> to be a common characteristic.  Of course many children this age are long
> and lanky but she is more so than average.  She can also wrap herself up
> like some kind of a contortionist yet she cannot stand up and touch her
> toes. Apparently there are many things like this that go with Marfans.

> She had an echocardiogram last week and that looked OK except for a heart
> murmur so that is one test down.  She will also have to have genetic
> testing, eye tests and several other tests based on the results of these.
> Tomorrow is a big one for her - a Spect Scan which is a type of nucleur
> testing and will last all day.  She will be injected with a radioactive
> substance and later all her bones will be scanned.  I am taking off work to
> go with her Mom and her for this test as they are both understandably
> nervous about it and my son (her dad) is out of town on business.

> I am just hoping that I can be helpful and supportive for them both.  I know
> it is very *** my daughter-in-law as well as my DGD.  I remember well
> the feeling of having your child go through serious medical tests.  Right
> now my DGD is worried about the needle part of it as she will have an IV.  I
> am just hoping and praying that none of it is too difficult for her and that
> all results are negative.

> At any rate I'm rambling on about all this because I wondered if anyone here
> has any experience with Marfans Syndrome or knows anyone that has it?  I
> have never heard of anyone with this disorder before.  It seems to be a
> fairly rare disorder.  We could also use some prayers tomorrow if anyone has
> any to spare.

> Thank you all so much,

> Bonnie

--
Dr. Quilter
Ambassador of Extraordinary Aliens
http://www.FoundCollection.com/
(take the dog out before replying)

 
 
 

OT: Marfan Syndrome

Post by bogus addre » Thu, 24 Jun 2004 06:11:31


Quote:
> At any rate I'm rambling on about all this because I wondered if anyone
> here has any experience with Marfans Syndrome or knows anyone that has
> it?  I have never heard of anyone with this disorder before.  It seems
> to be a fairly rare disorder.

It has been suggested that Abe Lincoln had it, and would have died
of heart failure in a few years regardless of assassins, but at any
rate he does provide an example of somebody having a life despite it.

There were also suggestions a couple of years ago that Osama bin Laden
might have it (he has a similar build to Abe) but that seems to have
been the CIA's wishful thinking.

========> Email to "j-c" at this site; email to "bogus" will bounce <========
Jack Campin: 11 Third Street, Newtongrange, Midlothian EH22 4PU; 0131 6604760
<http://www.purr.demon.co.uk/purrhome.html>  food intolerance data & recipes,
Mac logic fonts, Scots traditional music files and CD-ROMs of Scottish music.

 
 
 

OT: Marfan Syndrome

Post by Kim » Thu, 24 Jun 2004 09:09:15


A 16 year old girl at my church has Marfan's.  She was diagnosed at
age 4, was put on a beta-blocker medication (it decreases the load on
the aorta), and has been doing well.  She had scoliosis surgery 2 or 3
years ago and came through it fine.

Marfan's is quite managable.  It's when it is not diagnosed/treated
that it can be dangerous.

Here are some links that might be helpful:
http://www.FoundCollection.com/
http://www.FoundCollection.com/
http://www.FoundCollection.com/

If you want/need more clinical information, email me privately and I
can get some to you.

Kim

Quote:

> My eight year old granddaughter is seeing a specialist because her regular
> doctor thinks she may have Marfan Syndrome.  He had mentioned the
> possibility of it several times when she was younger but did not feel the
> need at that time to pursue it yet.  Well, she has recently been having some
> back pains and they discovered she has scoliosis which it seems is quite
> common in children with Marfans.  He referred her to a pediatric orthopedic
> doctor who said she does have all the outward signs of Marfans so she now
> has to undergo a battery of various tests.  Basically Marfans is a
> connective tissue disease that affects many body systems, including the
> skeleton, eyes, heart and *** vessels, nervous system, skin and lungs.
> She is very tall for her age with long arms, legs and fingers and this seems
> to be a common characteristic.  Of course many children this age are long
> and lanky but she is more so than average.  She can also wrap herself up
> like some kind of a contortionist yet she cannot stand up and touch her
> toes. Apparently there are many things like this that go with Marfans.

> She had an echocardiogram last week and that looked OK except for a heart
> murmur so that is one test down.  She will also have to have genetic
> testing, eye tests and several other tests based on the results of these.
> Tomorrow is a big one for her - a Spect Scan which is a type of nucleur
> testing and will last all day.  She will be injected with a radioactive
> substance and later all her bones will be scanned.  I am taking off work to
> go with her Mom and her for this test as they are both understandably
> nervous about it and my son (her dad) is out of town on business.

> I am just hoping that I can be helpful and supportive for them both.  I know
> it is very *** my daughter-in-law as well as my DGD.  I remember well
> the feeling of having your child go through serious medical tests.  Right
> now my DGD is worried about the needle part of it as she will have an IV.  I
> am just hoping and praying that none of it is too difficult for her and that
> all results are negative.

> At any rate I'm rambling on about all this because I wondered if anyone here
> has any experience with Marfans Syndrome or knows anyone that has it?  I
> have never heard of anyone with this disorder before.  It seems to be a
> fairly rare disorder.  We could also use some prayers tomorrow if anyone has
> any to spare.

> Thank you all so much,

> Bonnie

 
 
 

OT: Marfan Syndrome

Post by muse » Thu, 24 Jun 2004 11:46:06


I would like to thank every one of you for your very helpful thoughts,
prayers and information.  Some of you have offered additional information
and I may take you up on that at some time in the future.  There is so much
we don't know now and the more we learn about Marfans the more frightened we
become.

My DGD did well with the tests today although we won't have any results for
a day or two.  I have no doubt that your good thoughts and prayers have
helped her to get through this difficult day and I know they sure did help
me!  We spent the entire day at Children's Mercy Hospital in Kansas City
where she has been having the various tests for this disorder.  She was very
frightened (understandably) at the thought of having an IV.  Polly I took
your advice and took that ammunition with me today but luckily I did not
have to use it as they did a good job inserting her IV and got it right the
first time.  They even put some numbing cream on the back of her hand about
a half hour before putting it in so that took at least a little of the pain
out of it for her.  I'm sure being at a children's hospital made a big
difference because everything was geared for children.  She was injected
with the radioactive substance this morning and then we had several hours to
wait before going back in for what ended up being a two hour Spect Scan.
Unfortunately she had to keep the IV needle in her hand the whole time in
order to avoid sticking her again in the afternoon.  She did not like that
at all but at least she did not have to stay in one place waiting for the
test so we could take her to the children's park outside the hospital and
she had a little fun there.  The scan was in two parts and for each one she
had to lie perfectly still and not move for over a half hour.  Try telling
an 8 year old to not move a muscle for that long!  She did move part of the
way through the first scan and it had to be redone but then she did very
good with that one and with the subsequent one.  They had a TV on cartoons
and that helped a lot.  She was very good and her parents and I are so proud
of her!  While we were waiting even though she was scared and had the IV
needle in her hand she was still reaching out to other children having tests
and trying to help them to not be scared.  She is such a loving little girl
always wanting to help others no matter what her own situation may be.

Even when we do get the results of this test we still won't know if she has
Marfans for awhile.  She is scheduled for some genetic testing but that
can't be done for a couple of months because the waiting list is so long for
those tests.  She will also be having some eye tests and at some point
possibly some more heart tests.

Thank you all again so much.  I can honestly say I have already come to love
this group and each and every one of you all!  (and I *still* have not
gotten my first quilt made!)  It helps so much to be able to reach out to
others in times like this.

Warm hugs to you all!

Bonnie

--

Quote:
> My eight year old granddaughter is seeing a specialist because her regular
> doctor thinks she may have Marfan Syndrome.  He had mentioned the
> possibility of it several times when she was younger but did not feel the
> need at that time to pursue it yet.  Well, she has recently been having
some
> back pains and they discovered she has scoliosis which it seems is quite
> common in children with Marfans.  He referred her to a pediatric
orthopedic
> doctor who said she does have all the outward signs of Marfans so she now
> has to undergo a battery of various tests.  Basically Marfans is a
> connective tissue disease that affects many body systems, including the
> skeleton, eyes, heart and *** vessels, nervous system, skin and lungs.
> She is very tall for her age with long arms, legs and fingers and this
seems
> to be a common characteristic.  Of course many children this age are long
> and lanky but she is more so than average.  She can also wrap herself up
> like some kind of a contortionist yet she cannot stand up and touch her
> toes. Apparently there are many things like this that go with Marfans.

> She had an echocardiogram last week and that looked OK except for a heart
> murmur so that is one test down.  She will also have to have genetic
> testing, eye tests and several other tests based on the results of these.
> Tomorrow is a big one for her - a Spect Scan which is a type of nucleur
> testing and will last all day.  She will be injected with a radioactive
> substance and later all her bones will be scanned.  I am taking off work
to
> go with her Mom and her for this test as they are both understandably
> nervous about it and my son (her dad) is out of town on business.

> I am just hoping that I can be helpful and supportive for them both.  I
know
> it is very *** my daughter-in-law as well as my DGD.  I remember well
> the feeling of having your child go through serious medical tests.  Right
> now my DGD is worried about the needle part of it as she will have an IV.
I
> am just hoping and praying that none of it is too difficult for her and
that
> all results are negative.

> At any rate I'm rambling on about all this because I wondered if anyone
here
> has any experience with Marfans Syndrome or knows anyone that has it?  I
> have never heard of anyone with this disorder before.  It seems to be a
> fairly rare disorder.  We could also use some prayers tomorrow if anyone
has
> any to spare.

> Thank you all so much,

> Bonnie

> --

> delete "removespam" to reply

 
 
 

OT: Marfan Syndrome

Post by nana2 » Thu, 24 Jun 2004 13:09:52


I am so glad your DGD came through all the tests ok.  My thoughts drifted to
you while I was sewong this afternoon.  Thanks for the update.

--
Sugar & Spice Quilts by Linda E
http://community.webshots.com/user/frame242

 
 
 

OT: Marfan Syndrome

Post by Polly Esthe » Thu, 24 Jun 2004 23:44:57


How happy I was to see you come back and tell us that all went well. You and
the little one were on my mind too. Polly


Quote:
> I am so glad your DGD came through all the tests ok.  My thoughts drifted
to
> you while I was sewong this afternoon.  Thanks for the update.

> --
> Sugar & Spice Quilts by Linda E
> http://community.webshots.com/user/frame242

 
 
 

OT: Marfan Syndrome

Post by RBel » Fri, 25 Jun 2004 02:34:22


In nursing school we learned that Fred Gwynn(I think that's his name), the
man who played Herman Munster, had Marfan's disease.  He led a successful,
fulfilling life. Mafan's is a terrible disease, but it is not a death
sentence and does not necessarily mean a debilitating lifestyle.  I pray all
goes well for your grand daughter, it's obvious she has great family
support.  Please keep us informed.

Quote:
> I would like to thank every one of you for your very helpful thoughts,
> prayers and information.  Some of you have offered additional information
> and I may take you up on that at some time in the future.  There is so
much
> we don't know now and the more we learn about Marfans the more frightened
we
> become.

> My DGD did well with the tests today although we won't have any results
for
> a day or two.  I have no doubt that your good thoughts and prayers have
> helped her to get through this difficult day and I know they sure did help
> me!  We spent the entire day at Children's Mercy Hospital in Kansas City
> where she has been having the various tests for this disorder.  She was
very
> frightened (understandably) at the thought of having an IV.  Polly I took
> your advice and took that ammunition with me today but luckily I did not
> have to use it as they did a good job inserting her IV and got it right
the
> first time.  They even put some numbing cream on the back of her hand
about
> a half hour before putting it in so that took at least a little of the
pain
> out of it for her.  I'm sure being at a children's hospital made a big
> difference because everything was geared for children.  She was injected
> with the radioactive substance this morning and then we had several hours
to
> wait before going back in for what ended up being a two hour Spect Scan.
> Unfortunately she had to keep the IV needle in her hand the whole time in
> order to avoid sticking her again in the afternoon.  She did not like that
> at all but at least she did not have to stay in one place waiting for the
> test so we could take her to the children's park outside the hospital and
> she had a little fun there.  The scan was in two parts and for each one
she
> had to lie perfectly still and not move for over a half hour.  Try telling
> an 8 year old to not move a muscle for that long!  She did move part of
the
> way through the first scan and it had to be redone but then she did very
> good with that one and with the subsequent one.  They had a TV on cartoons
> and that helped a lot.  She was very good and her parents and I are so
proud
> of her!  While we were waiting even though she was scared and had the IV
> needle in her hand she was still reaching out to other children having
tests
> and trying to help them to not be scared.  She is such a loving little
girl
> always wanting to help others no matter what her own situation may be.

> Even when we do get the results of this test we still won't know if she
has
> Marfans for awhile.  She is scheduled for some genetic testing but that
> can't be done for a couple of months because the waiting list is so long
for
> those tests.  She will also be having some eye tests and at some point
> possibly some more heart tests.

> Thank you all again so much.  I can honestly say I have already come to
love
> this group and each and every one of you all!  (and I *still* have not
> gotten my first quilt made!)  It helps so much to be able to reach out to
> others in times like this.

> Warm hugs to you all!

> Bonnie

> --


> > My eight year old granddaughter is seeing a specialist because her
regular
> > doctor thinks she may have Marfan Syndrome.  He had mentioned the
> > possibility of it several times when she was younger but did not feel
the
> > need at that time to pursue it yet.  Well, she has recently been having
> some
> > back pains and they discovered she has scoliosis which it seems is quite
> > common in children with Marfans.  He referred her to a pediatric
> orthopedic
> > doctor who said she does have all the outward signs of Marfans so she
now
> > has to undergo a battery of various tests.  Basically Marfans is a
> > connective tissue disease that affects many body systems, including the
> > skeleton, eyes, heart and *** vessels, nervous system, skin and lungs.
> > She is very tall for her age with long arms, legs and fingers and this
> seems
> > to be a common characteristic.  Of course many children this age are
long
> > and lanky but she is more so than average.  She can also wrap herself up
> > like some kind of a contortionist yet she cannot stand up and touch her
> > toes. Apparently there are many things like this that go with Marfans.

> > She had an echocardiogram last week and that looked OK except for a
heart
> > murmur so that is one test down.  She will also have to have genetic
> > testing, eye tests and several other tests based on the results of
these.
> > Tomorrow is a big one for her - a Spect Scan which is a type of nucleur
> > testing and will last all day.  She will be injected with a radioactive
> > substance and later all her bones will be scanned.  I am taking off work
> to
> > go with her Mom and her for this test as they are both understandably
> > nervous about it and my son (her dad) is out of town on business.

> > I am just hoping that I can be helpful and supportive for them both.  I
> know
> > it is very *** my daughter-in-law as well as my DGD.  I remember
well
> > the feeling of having your child go through serious medical tests.
Right
> > now my DGD is worried about the needle part of it as she will have an
IV.
> I
> > am just hoping and praying that none of it is too difficult for her and
> that
> > all results are negative.

> > At any rate I'm rambling on about all this because I wondered if anyone
> here
> > has any experience with Marfans Syndrome or knows anyone that has it?  I
> > have never heard of anyone with this disorder before.  It seems to be a
> > fairly rare disorder.  We could also use some prayers tomorrow if anyone
> has
> > any to spare.

> > Thank you all so much,

> > Bonnie

> > --

> > delete "removespam" to reply