OT: Marfan Syndrome

OT: Marfan Syndrome

Post by muse » Wed, 23 Jun 2004 09:41:53



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 Kathy Applebau » Wed, 23 Jun 2004 09:52:11



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.  We could also use some prayers tomorrow if anyone
has
> any to spare.

I'm crossing my fingers for your little DGD!

I never heard of it before either, but here's a place that might help you
find people to talk to and more info about it:
http://www.FoundCollection.com/

--
Kathy A. (Woodland, CA)
longarm machine quilting, Queen of Fabric ***s

remove the obvious to reply

 
 
 

OT: Marfan Syndrome

Post by Bob & Kathlee » Wed, 23 Jun 2004 10:34:54


I remembered seeing a newsprogram about this within the last year. I
found it on google. It was a series about the Arkansas Children's
hospital in Little Rock. All about various heart problems and children.

http://abcnews.go.com/sections/living/DailyNews/marfan020814.html

Will keep all of you in my prayers. Being a grandmother also just makes
me want to run to my granddaugters and hug them tight.
Kathleen

 
 
 

OT: Marfan Syndrome

Post by Polly Esthe » Wed, 23 Jun 2004 10:45:20


Prayers for all, *** for her and gunpowder for you. Offer a special
something to your little granddaughter to think about during the testing - a
trip somewhere that she's always wanted? a Doberman? cotton candy? Keep her
distracted by happy things that she might like to have. (Hopefully, some
sillies and somethings you really can produce.)
    And some ammunition for you - you Certainly Can tell the i.v. person
that you believe you need somebody else if they don't manage to get the i.v.
done without problems. It is not required or even acceptable to tolerate
incompetence. Our prayer is that there won't be the slightest problem, but
if there is . . . speak up and ship any defects to The Swamp.  Polly
 
 
 

OT: Marfan Syndrome

Post by merrystitc » Wed, 23 Jun 2004 10:55:37


Quote:
>  We could also use some prayers tomorrow if anyone has
> any to spare.

> Thank you all so much,

> Bonnie

Prayers are kinda like jello--there's always room for more.  Prayers and
hugs going out from NW OH for you, DIL & DGD.

Merrystitch

Quote:

> --

> delete "removespam" to reply

 
 
 

OT: Marfan Syndrome

Post by Louis » Wed, 23 Jun 2004 11:44:07


Prayers for a good outcome are coming your way, Bonnie. I've heard of
Marfans, but I haven't known of anyone affected by it. Best of luck with the
tests your DGD is going to be undergoing.

--
Louise in Iowa
nieland4 at mchsi dot com
http://www.FoundCollection.com/


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 Tari » Wed, 23 Jun 2004 11:48:23


ditto from So.Cal.
Hugs, Taria
Quote:

> Prayers are kinda like jello--there's always room for more.  Prayers and
> hugs going out from NW OH for you, DIL & DGD.

> Merrystitch

 
 
 

OT: Marfan Syndrome

Post by Carolyn McCart » Wed, 23 Jun 2004 12:43:20


Prayers, like love, are expandable.  Sending prayers and good thoughts your
way from Tucson.  And a little luck, too, it never hurts to have a bit of
extra luck.

--
Carolyn in The Old Pueblo

If it ain't broke, you're not trying.   --Red Green
If it ain't broke, it ain't mine.   --Carolyn McCarty

If at first you don't succeed, switch to power tools.   --Red Green
If at first you don't succeed, get a bigger hammer.   --Carolyn McCarty


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 Mika » Wed, 23 Jun 2004 12:50:20


Oh Bonnie, I am so sorry to hear this. I'm sending tons of hugs and prayers
to you and your family.

Mika


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 » Wed, 23 Jun 2004 12:57:13


Sending good and hopeful thoughts to you.  Give your DGD a kiss for me.  I,
too, really hate needles.

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

 
 
 

OT: Marfan Syndrome

Post by Joanne Passmor » Wed, 23 Jun 2004 13:41:13


On 6/21/04 11:50 PM, in article

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.

Dear Bonnie: The husband of the girl who sang at our wedding thirty one
years ago had Marfan's Disorder but it wasn't diagnosed until he was married
with three children of his own. Two of his three children also have the
disease. Larry was very tall and lanky and his fingers were very long and
his second toe on each foot was longer than normal...those were the first
clues. We lost touch with this family and haven't connected in more than
twenty years. There is so much new research and meds available nowadays- I
will keep you and your family in my thoughts and prayers- keep the faith.