Hello,

I have just recently discovered online support groups (I know, I
know...I must be living under a rock! :)

I'm sure my reply is VERY late but I was looking through the messages
and came across this so I thought I'd reply.  I have 5 children.  My 4th
child, a daughter who is 11, has Arthrogryposis.  We had no idea that
there was anything wrong with the pregnancy and were VERY shocked when
she was born.  She was born with the Amyoplasia type of AMC.

In answer to your question, I did have another child after my daughter.
Another beautiful girl who is now 9.  She does NOT have Arthrogryposis.
I was told that there was a 25% chance that I could have another child
with AMC but by the time they figured that out and relayed that
information to me, I was already 5 months pregnant :)


I wish you the best with your little ones.

Shamida

--- In arthrogryposissupportgroup@yahoogroups.com, "delsweet2003"
<delsweet2003@...> wrote:
>
>
> I have a son who has arthrogryposis he is 10 yrs old...
> im expecting my second child. i was reading on line that the chances
of having another child with arthrogryposis were 1 in 3000. Is there any
moms outhere that have had any other children after an arthrogryposis
child?
>

Hello,

My name is Shamida and I have just recently discovered online support groups.

I have an 11 year old daughter with AMC-Amyoplasia.  She is doing remarkably
well.  I can't tell you how helpful this group would have been to me these past
11 years when our family was going through all the surgeries, recoveries,
brainstorming, problem solving etc...but as a parent of an AMC child I can tell
you: you never have enough information and you never know it all.

She is now entering those lovely 'tween years' that have me pulling my hair out
and she is encountering some 'bullying' at school as well.

The list really is endless when it comes to the problems we HAVE, we ARE, and we
WILL face....

Just wanted to briefly introduce myself...I will be posting more in the coming
days..

Thanks,
Shamida

[Non-text portions of this message have been removed]

I have noticed it's been very quiet on here as well, except for lots of Spam
messages.
I have seen a huge number of AMC people on Facebook.. If you are on Facebook
search for AMC and Arthrogryposis and that's how I found them



[Non-text portions of this message have been removed]

Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra



[Non-text portions of this message have been removed]

WALMART

--- On Fri, 11/6/09, gumyee <gumyee@...> wrote:


From: gumyee <gumyee@...>
Subject: [Arthrogryposis Support Group] elastic waist pants with fly?
To: arthrogryposissupportgroup@yahoogroups.com
Date: Friday, November 6, 2009, 2:34 PM


 



Does anyone know where to buy CHEAP elastic waist pants but that have an easy to
open fly for boys? At an easily available place, not a specialty store. thanks!
Diane











[Non-text portions of this message have been removed]

Does anyone know where to buy CHEAP elastic waist pants but that have an easy to
open fly for boys? At an easily available place, not a specialty store. thanks!
Diane

I am sorry to hear about your diagnosis, and I know that it is hard for you
right now.  My son Jack was born with Distal Arthrogryposis, and at first he
couldn't open his hands, and his feet looked like he had club foot.  We started
with casts on his feet and splints on his hands.  He is 2 now and still goes to
physical therapy, but he is doing great!  He will need surgery on his feet
later, but he walks, runs, and has full use of his hands.
Every case of AMC is different.  There are experts here in Seattle at the
University of Washington that are researching AMC.  They have identified several
hundred different types, and they have isolated that gene mutations that cause
most AMC.  People come here from all over the world to get treated.  His name is
Dr. Bamshed  (sp?) and he practices at Seattle Children's Hospital.  There is
another Canadian doctor who comes here a few times a year to see children as
well.  There are lots of doctors in the U.S. who are AMC experts.  Perhaps your
doctors could consult with some of them.
I'm sure your little one will be fine.  Just seek the best treatment you can
early on.  My son is a wonderful, smart, funny, fully-functioning little boy.
 You're baby will do fine!  

--- On Mon, 11/2/09, Steinunn Hlín Þrastardóttir <steinunnhlin@...> wrote:

From: Steinunn Hlín Þrastardóttir <steinunnhlin@...>
Subject: Re: [Arthrogryposis Support Group] Welcome Steinunn about 
Arthrogryposis
To: arthrogryposissupportgroup@yahoogroups.com
Date: Monday, November 2, 2009, 6:35 AM













 





                   Thank you so much for that Kelli Peasley . Yes its nice to
live in Iceland.

My boyfreind is from Ireland and he thinks its very nice to live here.

The doctors here in Iceland dont know that much about AMC and they really

dont know what to expected until the baby is born and we have been waiting

13 weeks now but no one can tell us what to expecte. So that has been hard

for us not to know anything and have to wait for so long and have no idea

about AMC. But thanks to this croup, i have found a lot of thinks about it.

My baby is not moving the feets and the thumbs are standing out and the

doctor here calls it hitchihiker´s thumb´s. The say that they dont know why

the thumbs are standig out like that, and they say that kids that are born

whit AMC have the thumb usally inside there hands, so we have to wait for to

find out about that also. One of the doctors that we talk to about this said

that after the baby is born we can take it home and com back after few days,

but i thougt it would be best if the baby starts physiotherapy (hope its the

right word) soon after it is born. But like i said we dont know anything.

Im thinking about starting a website here in Iceland about AMC to inform

parents that could need it sometime in the future to know what AMC is. But

that is just a thought :o)

Thank you so much for the help, someday when the baby is born i can send you

an email to ask you some more questins[?].

Steinunn Hlín



2009/11/2 kelli peasley <santiamor2002@ yahoo.com>



>

>

> Hi Steinunn. Welcome to this group.. Just to let you know I lived in

> Iceland Reykjavik for one year in 1986, have so many great memories of your

> beautiful country and people, I hope to return someday soon (I lived with

> Einer Einerson in breidholti) Anyway, now about your baby.  Don´t be

> alarmed.  Have they mentioned your level of amniotic fluid?  Sometimes if

> you don´t have a lot or its low, the baby cannot move much, thus often they

> recommend laying on your side as much as possible to help accumulate the

> fluid for the baby to more comfortably move while its in the womb.  Right

> now for some reason the baby is being restricted in movement.  It could be

> neurological where the nerves haven´t been formed correctly or it could be

> more of a problem inside the womb which for some reason is not letting him

> move.  i.e amniotic fluid is low, the shape of your womb is deformed, etc.

> Sometimes the doctor might recommend you walk more or try to stay more

> active if they think the baby is in a position that is not letting him/her

> get out of. If however, they think it might be more neurological, the proper

> care might change.  My son was in the breech position the entire pregnancy,

> he never moved.  My doctor wasn´t well informed and instead of insisting on

> more exercise, he made me do bed rest.  Later after investigating and

> talking to others, it was probably exactly what I shouldn´t have done.

> However, we have to be able to rely on our doctors and trust their

> opinions.  Do make sure you ask the doctor about that, right now is a

> crucial moment to try to get the baby moving more to start getting his/her

> little muscles active which is so important, especially now while you still

> have them growing and they can still be helped.  However, if the fluid is

> low, or its more neurological you might need to be doing bed rest to help

> accumulate the fluid more.  Often the doctors feel that the baby may do

> better outside the womb, thus often they push the delivery up by one

> month.  Just because the baby has the contractures in the limbs, doesn´t

> necessarily mean that they are going to be pre-mature, only if the doctor

> decides to deliver the baby before time.  About AMC, it is like a cough,

> there are 1,000s of types, thus the type of AMC your baby has may be

> completely different then anyone elses.  Also remember that AMC alone, with

> no underlying syndromes, is NOT degenerative, it does not get worse with

> time.  Lots of AMC kids you cannot even tell they have it, others have it

> more severely and some cannot walk without assistance.  Santiago my son, is

> a mild case, he had club feet, hypotonia, contractures of his extremities

> mainly his hands, and he also has scoliosis.  He can walk and run (in his

> own cute way) and goes to the Jesuite school along with his two older

> brothers, he is completely intigrated with everyone else.  Thus, don´t start

> worrying about what AMC is until your baby is born.  No matter what,

> your baby is going to be special and incredibly bright and a fighter

> for his/her entire life.  I wouldn´t change Santiago for anything.  He is

> the light of my life and I see things in a whole new way thanks to my son.

> If you want to chat in private I would be happy to talk with you some

> more.  My address is santiamor2002@ yahoo.com <santiamor2002% 40yahoo.com>

> Take care and good luck,.,

>

> Kelli Peasley

>

>

> --- El sáb, 31/10/09, steinunnhlin <steinunnhlin@ gmail.com<steinunnhlin%
40gmail.com> >

> escribió:

>

> De: steinunnhlin <steinunnhlin@ gmail.com <steinunnhlin% 40gmail.com> >

> Asunto: [Arthrogryposis Support Group] My baby has arthrogryposis.

> Para: arthrogryposissuppo rtgroup@yahoogro ups.com<arthrogryposissupp
ortgroup% 40yahoogroups. com>

> Fecha: sábado, 31 octubre, 2009 12:51

>

>

>

> Hi my name is Steinunn and im from Iceland.

> Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant

> that something was wrong because the baby did not move its feets and then

> they told us that the baby had arthrogryposis, i was verry scared because i

> had no idea what that was and i still have no idea what it is. The baby has

> it just in the knees and the thumbs are standing out.

> We have no idea what to expect and the doctors say that the baby could come

> any day now, beacours babys whit arthrogryposis are usaly born be bofere

> time. Is that true? And how long to the have to be at the hospital after

> they are born? Is ther anything that i can do?

>

> Sorry for my english we dont speak it here :o)

>

> [Non-text portions of this message have been removed]

>

>

>



[Non-text portions of this message have been removed]




































[Non-text portions of this message have been removed]

Thank you so much for that Kelli Peasley . Yes its nice to live in Iceland.
My boyfreind is from Ireland and he thinks its very nice to live here.
The doctors here in Iceland dont know that much about AMC and they really
dont know what to expected until the baby is born and we have been waiting
13 weeks now but no one can tell us what to expecte. So that has been hard
for us not to know anything and have to wait for so long and have no idea
about AMC. But thanks to this croup, i have found a lot of thinks about it.
My baby is not moving the feets and the thumbs are standing out and the
doctor here calls it hitchihiker´s thumb´s. The say that they dont know why
the thumbs are standig out like that, and they say that kids that are born
whit AMC have the thumb usally inside there hands, so we have to wait for to
find out about that also. One of the doctors that we talk to about this said
that after the baby is born we can take it home and com back after few days,
but i thougt it would be best if the baby starts physiotherapy (hope its the
right word) soon after it is born. But like i said we dont know anything.
Im thinking about starting a website here in Iceland about AMC to inform
parents that could need it sometime in the future to know what AMC is. But
that is just a thought :o)
Thank you so much for the help, someday when the baby is born i can send you
an email to ask you some more questins[?].
Steinunn Hlín



2009/11/2 kelli peasley <santiamor2002@...>

>
>
> Hi Steinunn. Welcome to this group.. Just to let you know I lived in
> Iceland Reykjavik for one year in 1986, have so many great memories of your
> beautiful country and people, I hope to return someday soon (I lived with
> Einer Einerson in breidholti) Anyway, now about your baby.  Don´t be
> alarmed.  Have they mentioned your level of amniotic fluid?  Sometimes if
> you don´t have a lot or its low, the baby cannot move much, thus often they
> recommend laying on your side as much as possible to help accumulate the
> fluid for the baby to more comfortably move while its in the womb.  Right
> now for some reason the baby is being restricted in movement.  It could be
> neurological where the nerves haven´t been formed correctly or it could be
> more of a problem inside the womb which for some reason is not letting him
> move.  i.e amniotic fluid is low, the shape of your womb is deformed, etc.
> Sometimes the doctor might recommend you walk more or try to stay more
> active if they think the baby is in a position that is not letting him/her
> get out of. If however, they think it might be more neurological, the proper
> care might change.  My son was in the breech position the entire pregnancy,
> he never moved.  My doctor wasn´t well informed and instead of insisting on
> more exercise, he made me do bed rest.  Later after investigating and
> talking to others, it was probably exactly what I shouldn´t have done.
> However, we have to be able to rely on our doctors and trust their
> opinions.  Do make sure you ask the doctor about that, right now is a
> crucial moment to try to get the baby moving more to start getting his/her
> little muscles active which is so important, especially now while you still
> have them growing and they can still be helped.  However, if the fluid is
> low, or its more neurological you might need to be doing bed rest to help
> accumulate the fluid more.  Often the doctors feel that the baby may do
> better outside the womb, thus often they push the delivery up by one
> month.  Just because the baby has the contractures in the limbs, doesn´t
> necessarily mean that they are going to be pre-mature, only if the doctor
> decides to deliver the baby before time.  About AMC, it is like a cough,
> there are 1,000s of types, thus the type of AMC your baby has may be
> completely different then anyone elses.  Also remember that AMC alone, with
> no underlying syndromes, is NOT degenerative, it does not get worse with
> time.  Lots of AMC kids you cannot even tell they have it, others have it
> more severely and some cannot walk without assistance.  Santiago my son, is
> a mild case, he had club feet, hypotonia, contractures of his extremities
> mainly his hands, and he also has scoliosis.  He can walk and run (in his
> own cute way) and goes to the Jesuite school along with his two older
> brothers, he is completely intigrated with everyone else.  Thus, don´t start
> worrying about what AMC is until your baby is born.  No matter what,
> your baby is going to be special and incredibly bright and a fighter
> for his/her entire life.  I wouldn´t change Santiago for anything.  He is
> the light of my life and I see things in a whole new way thanks to my son.
> If you want to chat in private I would be happy to talk with you some
> more.  My address is santiamor2002@... <santiamor2002%40yahoo.com>
> Take care and good luck,.,
>
> Kelli Peasley
>
>
> --- El sáb, 31/10/09, steinunnhlin
<steinunnhlin@...<steinunnhlin%40gmail.com>>
> escribió:
>
> De: steinunnhlin <steinunnhlin@... <steinunnhlin%40gmail.com>>
> Asunto: [Arthrogryposis Support Group] My baby has arthrogryposis.
> Para:
arthrogryposissupportgroup@yahoogroups.com<arthrogryposissupportgroup%40yahoogro\
ups.com>
> Fecha: sábado, 31 octubre, 2009 12:51
>
>
>
> Hi my name is Steinunn and im from Iceland.
> Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant
> that something was wrong because the baby did not move its feets and then
> they told us that the baby had arthrogryposis, i was verry scared because i
> had no idea what that was and i still have no idea what it is. The baby has
> it just in the knees and the thumbs are standing out.
> We have no idea what to expect and the doctors say that the baby could come
> any day now, beacours babys whit arthrogryposis are usaly born be bofere
> time. Is that true? And how long to the have to be at the hospital after
> they are born? Is ther anything that i can do?
>
> Sorry for my english we dont speak it here :o)
>
> [Non-text portions of this message have been removed]
>
>
>


[Non-text portions of this message have been removed]

Hi Steinunn. Welcome to this group.. Just to let you know I lived in Iceland
Reykjavik for one year in 1986, have so many great memories of your beautiful
country and people, I hope to return someday soon (I lived with Einer Einerson
in breidholti) Anyway, now about your baby.  Don´t be alarmed.  Have they
mentioned your level of amniotic fluid?  Sometimes if you don´t have a lot or
its low, the baby cannot move much, thus often they recommend laying on your
side as much as possible to help accumulate the fluid for the baby to more
comfortably move while its in the womb.  Right now for some reason the baby is
being restricted in movement.  It could be neurological where the nerves haven´t
been formed correctly or it could be more of a problem inside the womb which for
some reason is not letting him move.  i.e amniotic fluid is low, the shape of
your womb is deformed, etc.  Sometimes the doctor might recommend you walk more
or try to stay more
  active if they think the baby is in a position that is not letting him/her get
out of. If however, they think it might be more neurological, the proper care
might change.  My son was in the breech position the entire pregnancy, he never
moved.  My doctor wasn´t well informed and instead of insisting on more
exercise, he made me do bed rest.  Later after investigating and talking to
others, it was probably exactly what I shouldn´t have done.  However, we have to
be able to rely on our doctors and trust their opinions.  Do make sure you ask
the doctor about that, right now is a crucial moment to try to get the baby
moving more to start getting his/her little muscles active which is so
important, especially now while you still have them growing and they can still
be helped.  However, if the fluid is low, or its more neurological you might
need to be doing bed rest to help accumulate the fluid more.  Often the doctors
feel that the baby may do
  better outside the womb, thus often they push the delivery up by one month. 
Just because the baby has the contractures in the limbs, doesn´t necessarily
mean that they are going to be pre-mature, only if the doctor decides to deliver
the baby before time.  About AMC, it is like a cough, there are 1,000s of types,
thus the type of AMC your baby has may be completely different then anyone
elses.  Also remember that AMC alone, with no underlying syndromes, is NOT
degenerative, it does not get worse with time.  Lots of AMC kids you cannot even
tell they have it, others have it more severely and some cannot walk without
assistance.  Santiago my son, is a mild case, he had club feet, hypotonia,
contractures of his extremities mainly his hands, and he also has scoliosis.  He
can walk and run (in his own cute way) and goes to the Jesuite school along with
his two older brothers, he is completely intigrated with everyone else.  Thus,
don´t start
  worrying about what AMC is until your baby is born.  No matter what, your baby
is going to be special and incredibly bright and a fighter for his/her entire
life.  I wouldn´t change Santiago for anything.  He is the light of my life and
I see things in a whole new way thanks to my son.  If you want to chat in
private I would be happy to talk with you some more.  My address is
santiamor2002@...
Take care and good luck,.,
 
Kelli Peasley
 

--- El sáb, 31/10/09, steinunnhlin <steinunnhlin@...> escribió:


De: steinunnhlin <steinunnhlin@...>
Asunto: [Arthrogryposis Support Group] My baby has arthrogryposis.
Para: arthrogryposissupportgroup@yahoogroups.com
Fecha: sábado, 31 octubre, 2009 12:51


 



Hi my name is Steinunn and im from Iceland.
Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant that
something was wrong because the baby did not move its feets and then they told
us that the baby had arthrogryposis, i was verry scared because i had no idea
what that was and i still have no idea what it is. The baby has it just in the
knees and the thumbs are standing out.
We have no idea what to expect and the doctors say that the baby could come any
day now, beacours babys whit arthrogryposis are usaly born be bofere time. Is
that true? And how long to the have to be at the hospital after they are born?
Is ther anything that i can do?

Sorry for my english we dont speak it here :o)



















[Non-text portions of this message have been removed]

our son has it in his knees too. He was late, 44 weeks and he did not have to
stay in the hospital after birth as it's not a life threatening thing, or
sickness... it's a disability for the most part, especially if it's juts in his
knees. You'll have a lifetime of therapy to keep his legs straight if they're
bent, and if they're straight, he'll walk but either way he should be fine. Our
son had bent knees, locked in a bent possiton, with therapy (he's 4 now) was
able to walk (with braces on his legs) when he was just 2. He's a normal boy,
just has a few obstacles to deal with. Here's something you might like, kids
with this condidtion tend to be very smart, our son is 4 and can read, do math,
has a very good vocabulary... work hard to get him to walk and move as normally
as you can, and work on his brain : )  




________________________________
From: Doris Heckert <dijdheckert@...>
To: "arthrogryposissupportgroup@yahoogroups.com"
<arthrogryposissupportgroup@yahoogroups.com>
Sent: Sun, November 1, 2009 9:41:52 AM
Subject: Re: [Arthrogryposis Support Group] My baby has arthrogryposis.

 
My son was born with Arthrogryposis, please check out our blog at baby-Jackson.
blogspot. com & amcsupport.org, lots of great ppl
Willing to help there

Sent from my iPhone

On Oct 31, 2009, at 1:51 PM, "steinunnhlin" <steinunnhlin@ gmail.com> wrote:

Hi my name is Steinunn and im from Iceland.
Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant that
something was wrong because the baby did not move its feets and then they told
us that the baby had arthrogryposis, i was verry scared because i had no idea
what that was and i still have no idea what it is. The baby has it just in the
knees and the thumbs are standing out.
We have no idea what to expect and the doctors say that the baby could come any
day now, beacours babys whit arthrogryposis are usaly born be bofere time. Is
that true? And how long to the have to be at the hospital after they are born?
Is ther anything that i can do?

Sorry for my english we dont speak it here :o)

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

I was born only 2 weeks early...

Rgds!

Urska




________________________________
From: Dimitra Giannopoulou <dimigian@...>
To: arthrogryposissupportgroup@yahoogroups.com
Sent: Sun, November 1, 2009 8:32:17 PM
Subject: Re: [Arthrogryposis Support Group] My baby has arthrogryposis.


First of all our best wishes for your upcoming baby.

My daughter was not diagnosed before birth. I had a c-section because I was
not going on labour, giving birth to a 40 week baby.

When I first jointed the team, back in October 1999, everybody was advising
me to be happy and enjoy my baby and every  single day with her. I did not.
I was so worried. WRONG. I should have.

It does not get worse.

I have read that AMC babies must be born earlier than 40 weeks, because
space inside uterus gets limited for them. Make sure you find a pediatrician
than you feel comfortable and confident with and he/she will guide you
through, along with us.

There is not only one type of AMC. When you know the type, let us know and
we will be able to give you more information.

My daughter has AMC, Amyoplacia and it is true that it did not get worse
after birth. She is now walking, playing soccer which she loves, attend a
choir etc. She is very good child and I am really proud of her. I have two
younger boys.

My husband advises the following: It only gets better after birth. You shall
need patience and courage. Always think positive.

Dimitra from Greece

2009/10/31 steinunnhlin <steinunnhlin@ gmail.com>

>
>
> Hi my name is Steinunn and im from Iceland.
> Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant
> that something was wrong because the baby did not move its feets and then
> they told us that the baby had arthrogryposis, i was verry scared because i
> had no idea what that was and i still have no idea what it is. The baby has
> it just in the knees and the thumbs are standing out.
> We have no idea what to expect and the doctors say that the baby could come
> any day now, beacours babys whit arthrogryposis are usaly born be bofere
> time. Is that true? And how long to the have to be at the hospital after
> they are born? Is ther anything that i can do?
>
> Sorry for my english we dont speak it here :o)
>
>
>

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

First of all our best wishes for your upcoming baby.



My daughter was not diagnosed before birth. I had a c-section because I was
not going on labour, giving birth to a 40 week baby.

When I first jointed the team, back in October 1999, everybody was advising
me to be happy and enjoy my baby and every  single day with her. I did not.
I was so worried. WRONG. I should have.

It does not get worse.

I have read that AMC babies must be born earlier than 40 weeks, because
space inside uterus gets limited for them. Make sure you find a pediatrician
than you feel comfortable and confident with and he/she will guide you
through, along with us.

There is not only one type of AMC. When you know the type, let us know and
we will be able to give you more information.



My daughter has AMC, Amyoplacia and it is true that it did not get worse
after birth. She is now walking, playing soccer which she loves, attend a
choir etc. She is very good child and I am really proud of her. I have two
younger boys.



My husband advises the following: It only gets better after birth. You shall
need patience and courage. Always think positive.



Dimitra from Greece


2009/10/31 steinunnhlin <steinunnhlin@...>

>
>
> Hi my name is Steinunn and im from Iceland.
> Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant
> that something was wrong because the baby did not move its feets and then
> they told us that the baby had arthrogryposis, i was verry scared because i
> had no idea what that was and i still have no idea what it is. The baby has
> it just in the knees and the thumbs are standing out.
> We have no idea what to expect and the doctors say that the baby could come
> any day now, beacours babys whit arthrogryposis are usaly born be bofere
> time. Is that true? And how long to the have to be at the hospital after
> they are born? Is ther anything that i can do?
>
> Sorry for my english we dont speak it here :o)
>
>
>


[Non-text portions of this message have been removed]

My Bonnie was born at 35 weeks with arthrogryposis. We also knew about it before
her birth. Although scary, it did get easier. She is quite the kid now! She
amazes me daily!

----- Original Message -----
From: steinunnhlin
To: arthrogryposissupportgroup@yahoogroups.com
Sent: Saturday, October 31, 2009 10:51 AM
Subject: [Arthrogryposis Support Group] My baby has arthrogryposis.


   Hi my name is Steinunn and im from Iceland.
Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant that
something was wrong because the baby did not move its feets and then they told
us that the baby had arthrogryposis, i was verry scared because i had no idea
what that was and i still have no idea what it is. The baby has it just in the
knees and the thumbs are standing out.
We have no idea what to expect and the doctors say that the baby could come any
day now, beacours babys whit arthrogryposis are usaly born be bofere time. Is
that true? And how long to the have to be at the hospital after they are born?
Is ther anything that i can do?

Sorry for my english we dont speak it here :o)





[Non-text portions of this message have been removed]

My son was born with Arthrogryposis, please check out our blog at
baby-Jackson.blogspot.com & amcsupport.org, lots of great ppl
Willing to help there

Sent from my iPhone

On Oct 31, 2009, at 1:51 PM, "steinunnhlin" <steinunnhlin@...> wrote:

Hi my name is Steinunn and im from Iceland.
Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant that
something was wrong because the baby did not move its feets and then they told
us that the baby had arthrogryposis, i was verry scared because i had no idea
what that was and i still have no idea what it is. The baby has it just in the
knees and the thumbs are standing out.
We have no idea what to expect and the doctors say that the baby could come any
day now, beacours babys whit arthrogryposis are usaly born be bofere time. Is
that true? And how long to the have to be at the hospital after they are born?
Is ther anything that i can do?

Sorry for my english we dont speak it here :o)







[Non-text portions of this message have been removed]

Hi my name is Steinunn and im from Iceland.
Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant that
something was wrong because the baby did not move its feets and then they told
us that the baby had arthrogryposis, i was verry scared because i had no idea
what that was and i still have no idea what it is. The baby has it just in the
knees and the thumbs are standing out.
We have no idea what to expect and the doctors say that the baby could come any
day now, beacours babys whit arthrogryposis are usaly born be bofere time. Is
that true? And how long to the have to be at the hospital after they are born?
Is ther anything that i can do?

Sorry for my english we dont speak it here :o)

Yes, the feeding problem is common.  I have twin boys, one with AMC and one
without.  The twin without eats like a horse, eats whatever you put in front of
him, and always wants more.  With the other little guy, every meal is a battle.
 He is two and he still eats stage 2 baby food, and eats very little regular
food.  He'll take a bite, hold it in his mouth for 10 minutes, then spit it out.
 We are working with a physical therapist at Children's to help him.  It is VERY
frustrating.  Hang in there, and get support.  Find a physical therapist who
specializes in eating difficulties, and get help.  There are all kinds of little
tricks they can teach you, like adding powdered milk and half and half to his
bottle to increase the calories.  Hang in there and good luck to you!

--- On Mon, 10/26/09, Jake Steingart <reontv@...> wrote:

From: Jake Steingart <reontv@...>
Subject: [Arthrogryposis Support Group] Re: feeding difficulties
To: arthrogryposissupportgroup@yahoogroups.com
Date: Monday, October 26, 2009, 5:36 AM













 





                   Yup, our Son is 4 and it was always a battle to get him to
eat. He's very picky, but will opt for a spinich leaf over a sweet. I guess
that's a good thing. The stuff you'd think he'd enjoy, like any other kid, he
turns his nose up to, won'r even try it, and the stuff every other kid would
turn their noses up to, he'll try without hesitation. Must be an AMC thing.
Feeding him as an infant was very frustrating. It's not so bad now that we know
what he likes, in fact he eats quite well. He likes real food, chicken legs,
rice, bean sauce, spinich and when he was an infant we had to experiment with
different formulas, I think we ended uo making his milk with that Nido powdered
milk, that he liked.



--- In arthrogryposissuppo rtgroup@yahoogro ups.com, mhamm80@... wrote:

>

> My grandson is now 18 months old and last week the gastro Dr wanted  to put

> a feeding tube down his nose.  His is small and weighs about 15 lbs  and

> has always hated to eat or take a bottle.

>

> I am just trying to get some advice about other children with  feeding

> issues and is a feeding tube the normal thing for a child with  AMC.

>

> thank you so much for any help or advice

>

> Martha in Stockbridge, GA

>

>

> [Non-text portions of this message have been removed]

>




































[Non-text portions of this message have been removed]

Yup, our Son is 4 and it was always a battle to get him to eat. He's very picky,
but will opt for a spinich leaf over a sweet. I guess that's a good thing. The
stuff you'd think he'd enjoy, like any other kid, he turns his nose up to, won'r
even try it, and the stuff every other kid would turn their noses up to, he'll
try without hesitation. Must be an AMC thing. Feeding him as an infant was very
frustrating. It's not so bad now that we know what he likes, in fact he eats
quite well. He likes real food, chicken legs, rice, bean sauce, spinich and when
he was an infant we had to experiment with different formulas, I think we ended
uo making his milk with that Nido powdered milk, that he liked.

--- In arthrogryposissupportgroup@yahoogroups.com, mhamm80@... wrote:
>
> My grandson is now 18 months old and last week the gastro Dr wanted  to put
> a feeding tube down his nose.  His is small and weighs about 15 lbs  and
> has always hated to eat or take a bottle.
>
> I am just trying to get some advice about other children with  feeding
> issues and is a feeding tube the normal thing for a child with  AMC.
>
> thank you so much for any help or advice
>
> Martha in Stockbridge, GA
>
>
> [Non-text portions of this message have been removed]
>

Hello Sandi thank u for the advice this is so true only we know how our kids
feel and what they really need we know them better than any doctor best of
luck.  So ur dauther is 19 now rite???

--- On Tue, 9/8/09, Sandi Waymire <sandiwaymire@...> wrote:


From: Sandi Waymire <sandiwaymire@...>
Subject: [Arthrogryposis Support Group] RE: feeding difficulties
To: arthrogryposissupportgroup@yahoogroups.com
Date: Tuesday, September 8, 2009, 6:38 AM


 



My daughter is 19 w/ a relatively mild case of AMC.  I don't remember any
difficulties w/ eating BUT she can't smell and doesn't like certain foods (we
think this is related to the smell thing)...mostly bland foods (pasta).  She
loves salad and is careful to eat a healthy, well balanced diet so it is not her
just being picky.  While I can't give any help w/ the feeding difficulties I can
encourage each of you to continue to push for your child.  When you are told
something isn't related to AMC keep pushing.  I've learned through my own
research that people w/ AMC have all kinds of issues that aren't necesssarily
RELATED to AMC but it is interesting that many have the same problems.
Remember, YOU are your child's advocate.  Don't let a medical professional make
you feel inadequate because you don't have a medical degree.  They know the
body.  You know your child's body.  Find a team that will work WITH you.
Sandi in Arkansas

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

hello im sorry i havent responded i didnt find my password i would like to share
pictures with u if you would like...my son is the same way he is very
independent and he love to play and he also goes to normal school...

--- On Thu, 10/1/09, Emily Diehl <e_kay_d@...> wrote:


From: Emily Diehl <e_kay_d@...>
Subject: Re: [Arthrogryposis Support Group] Hello
To: arthrogryposissupportgroup@yahoogroups.com
Date: Thursday, October 1, 2009, 11:43 AM


 



Danetta,
Congratulations again on your new bundl of joy.
I know your family will be getting all kinds of suggestions and ideas. My oldest
child who is now 13 was born with AMC. She is lucky and has a very mild form of
it, however she also has neuromuscular disease as well. We have yet to find a
doctor who has seen the combintaion that she has. With that being said my advice
is to lover him like the gift he is. Larn as much about his disorders as you can
and always go with your gut. WE havae seen so many specialist and they have
wanted to do so many surgeries. She has yet to have a surgery for AMC or the
others but she walked for about 4 years b4 she had to go into a wheelchair full
time. She is in regular classes at scchool and has agreat social life. She is my
hero and inspiration. At 13 she knows more about her disorders than most doctors
she sees. Just keep you head up and be proud of your new grandson the good vibes
from you will help him too!

--- On Thu, 10/1/09, Dimitra Giannopoulou <dimigian@gmail. com> wrote:

From: Dimitra Giannopoulou <dimigian@gmail. com>
Subject: Re: [Arthrogryposis Support Group] Hello
To: arthrogryposissuppo rtgroup@yahoogro ups.com
Date: Thursday, October 1, 2009, 1:28 PM

 

Dear Danette,

First of all, congratulations for your grandson. My best to you and your
children.

I have a daughter, 10yo with AMC, AMyoplacia (clubfeet, extended knees &
knees, rotated inwards hands & shoulders). The first year was extremely
difficult. Mixed feelings overwhelming us guilt, despair, hope, joy, sadness
are a few of them.

I was very lucky to become a member of Avenues very early. At that time our
group was very strong. They got me through the really bad and "down" times.
My husband and i finally came through this crisis and stressful time during
the first 3 years.

My daughter was EXTREMELY LUCKY too. All the right people beside her.
Starting from PT therapist to Orthopaedic doctor. We were advised to start
PT aggressively very early. She started at the age of 6 days old, daily for
1 hour, whether it was a regular day of holiday. Casting on her feet started
at 25 days old almost for 10 moths.
PT did wonders. When she was 1 yo she had 1st surgery for clubfeet. Was
successful and some time after Melina walked. All the "work" had been done
with PT and stretcing from us. surgery put the final touch.
Years later we found out that her doctor had forecasted when first saw her
that she has 5% to become Sooooome time in her life shelf dependant. A year
later he was doing her a surgery to see her run.

It would be too long to write now what we have done after that...
Melina loves soccer, swims and can eat & dress herself, wipe her nose. She
is a great child.

I will advise you what i was advised, but i do know that it is very
difficult to comprehend and accept now.
Enjoy your little angel
Take one step at a time
find a doctor you FEEL right with
work a lot and hard. This is the "thing" you are to provide your child with.
Not clothes and studies etc.

I would strongly recomend PT if it is applicable to your case.

And for you grandma stay by your children side. They will definitely need
you.

Feel free to contact me personally.

Dimitra
Greece

2009/9/16 danette_bashaw <danette_bashaw@ yahoo.com>

>
>
> Hello, I am new to the group. I have a grandson who was 2 months premature
> with 3 diagnosis, arthrogrposis is being one of them. I am trying to get as
> much feedback as possible on this. I would love to have any words of wisdom
> and what me and my daughter should expect. Thank you, Danette
>
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

Danetta,
Congratulations again on your new bundl of joy.
I know your family will be getting all kinds of suggestions and ideas. My oldest
child who is now 13 was born with AMC. She is lucky and has a very mild form of
it, however she also has neuromuscular disease as well. We have yet to find a
doctor who has seen the combintaion that she has. With that being said my advice
is to lover him like the gift he is. Larn as much about his disorders as you can
and always go with your gut. WE havae seen so many specialist and they have
wanted to do so many surgeries. She has yet to have a surgery for AMC or the
others but she walked for about 4 years b4 she had to go into a wheelchair full
time. She is in regular classes at scchool and has agreat social life. She is my
hero and inspiration. At 13 she knows more about her disorders than most doctors
she sees. Just keep you head up and be proud of your new grandson the good vibes
from you will help him too!

--- On Thu, 10/1/09, Dimitra Giannopoulou <dimigian@...> wrote:


From: Dimitra Giannopoulou <dimigian@...>
Subject: Re: [Arthrogryposis Support Group] Hello
To: arthrogryposissupportgroup@yahoogroups.com
Date: Thursday, October 1, 2009, 1:28 PM


 



Dear Danette,

First of all, congratulations for your grandson. My best to you and your
children.

I have a daughter, 10yo with AMC, AMyoplacia (clubfeet, extended knees &
knees, rotated inwards hands & shoulders). The first year was extremely
difficult. Mixed feelings overwhelming us guilt, despair, hope, joy, sadness
are a few of them.

I was very lucky to become a member of Avenues very early. At that time our
group was very strong. They got me through the really bad and "down" times.
My husband and i finally came through this crisis and stressful time during
the first 3 years.

My daughter was EXTREMELY LUCKY too. All the right people beside her.
Starting from PT therapist to Orthopaedic doctor. We were advised to start
PT aggressively very early. She started at the age of 6 days old, daily for
1 hour, whether it was a regular day of holiday. Casting on her feet started
at 25 days old almost for 10 moths.
PT did wonders. When she was 1 yo she had 1st surgery for clubfeet. Was
successful and some time after Melina walked. All the "work" had been done
with PT and stretcing from us. surgery put the final touch.
Years later we found out that her doctor had forecasted when first saw her
that she has 5% to become Sooooome time in her life shelf dependant. A year
later he was doing her a surgery to see her run.

It would be too long to write now what we have done after that...
Melina loves soccer, swims and can eat & dress herself, wipe her nose. She
is a great child.

I will advise you what i was advised, but i do know that it is very
difficult to comprehend and accept now.
Enjoy your little angel
Take one step at a time
find a doctor you FEEL right with
work a lot and hard. This is the "thing" you are to provide your child with.
Not clothes and studies etc.

I would strongly recomend PT if it is applicable to your case.

And for you grandma stay by your children side. They will definitely need
you.

Feel free to contact me personally.

Dimitra
Greece

2009/9/16 danette_bashaw <danette_bashaw@ yahoo.com>

>
>
> Hello, I am new to the group. I have a grandson who was 2 months premature
> with 3 diagnosis, arthrogrposis is being one of them. I am trying to get as
> much feedback as possible on this. I would love to have any words of wisdom
> and what me and my daughter should expect. Thank you, Danette
>
>
>

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

Dear Danette,

First of all, congratulations for your grandson. My best to you and your
children.

I have a daughter, 10yo with AMC, AMyoplacia (clubfeet, extended knees &
knees, rotated inwards hands & shoulders). The first year was extremely
difficult. Mixed feelings overwhelming us guilt, despair, hope, joy, sadness
are a few of them.

I was very lucky to become a member of Avenues very early. At that time our
group was very strong. They got me through the really bad and "down" times.
My husband and i finally came through this crisis and stressful time during
the first 3 years.

My daughter was EXTREMELY LUCKY too. All the right people beside her.
Starting from PT therapist to Orthopaedic doctor. We were advised to start
PT aggressively very early. She started at the age of 6 days old, daily for
1 hour, whether it was a regular day of holiday. Casting on her feet started
at 25 days old almost for 10 moths.
PT did wonders. When she was 1 yo she had 1st surgery for clubfeet. Was
successful and some time after Melina walked. All the "work" had been done
with PT and stretcing from us. surgery put the final touch.
Years later we found out that her doctor had forecasted when first saw her
that she has 5% to become Sooooome time in her life shelf dependant. A year
later he was doing her a surgery to see her run.

It would be too long to write now what we have done after that...
Melina loves soccer, swims and can eat & dress herself, wipe her nose. She
is a great child.

I will advise you what i was advised, but i do know that it is very
difficult to comprehend and accept now.
Enjoy your little angel
Take one step at a time
find a doctor you FEEL right with
work a lot and hard. This is the "thing" you are to provide your child with.
Not clothes and studies etc.

I would strongly recomend PT if it is applicable to your case.

And for you grandma stay by your children side. They will definitely need
you.

Feel free to contact me personally.

Dimitra
Greece




2009/9/16 danette_bashaw <danette_bashaw@...>

>
>
> Hello, I am new to the group. I have a grandson who was 2 months premature
> with 3 diagnosis, arthrogrposis is being one of them. I am trying to get as
> much feedback as possible on this. I would love to have any words of wisdom
> and what me and my daughter should expect. Thank you, Danette
>
>
>


[Non-text portions of this message have been removed]

Lisa- So is he not able to actively flex anymore?  One of my concerns too is
that they are going to cast her above her elbow and I am worried that she will
lose the flexion she has and set us back there.  Did your sons cast go above his
elbow and did you experience a loss there?

--- On Mon, 9/28/09, casdog2003 <casdog2003@...> wrote:

From: casdog2003 <casdog2003@...>
Subject: [Arthrogryposis Support Group] Re: Surgery Question
To: arthrogryposissupportgroup@yahoogroups.com
Date: Monday, September 28, 2009, 7:54 AM













 





                   Now that his left wrist is in the neutral position, we are
doing ROM exercises that he's not too crazy about.  I think flexion will come in
time, however, his wrist is not swaying too far from the neutral position right
now.  We started taking off his splint more during the day and he's using his
hand alot more.  We're learning more every day--and have a new OT just for ROM. 
I'll keep you posted on his progress--



Lisa




































[Non-text portions of this message have been removed]

Now that his left wrist is in the neutral position, we are doing ROM exercises
that he's not too crazy about.  I think flexion will come in time, however, his
wrist is not swaying too far from the neutral position right now.  We started
taking off his splint more during the day and he's using his hand alot more. 
We're learning more every day--and have a new OT just for ROM.  I'll keep you
posted on his progress--

Lisa

My only advice is talk to your doctor about the pros and cons of waiting a year.
 A recent Mayo clinic study has linked multiple surgeries before the age of
three with an increase in learning disabilities.  So, if there is no harm in
waiting until she is 3, I would consider that.  My 2-year-old son has
Arthrogryposis and needs foot surgery but I am waiting until he is a little
older, because the doctor felt there is no harm in waiting.  Just something to
think about and talk to your doctor about!  I hope it all works out well.

--- On Thu, 9/24/09, j_figlio <josh_leo@...> wrote:

From: j_figlio <josh_leo@...>
Subject: [Arthrogryposis Support Group] Re: Surgery Question
To: arthrogryposissupportgroup@yahoogroups.com
Date: Thursday, September 24, 2009, 8:24 AM













 





                   Check out http://www.shriners hq.org/hospitals /main/  100%
free service. They will transport you for free too. Excellent service. They have
dealt with arthrogryposis. Only do the surgery if it will increase her function.
My daughter has thumb in palm but she is functional. If they bring my daughter's
thumb out (which shriners did not recommend) she would have looks and no
function



--- In arthrogryposissuppo rtgroup@yahoogro ups.com, "preachertx2002"
<Preachertx2002@ ...> wrote:

>

> I took my 2 year old daughter Ruthie (elbow and wrist arthrogryposis) to
Scottish Rite in Dallas yesterday and they recommended wrist surgery where they
would reposition her wrist into more extension by removing some bones,
transferring a tendon, and putting in 2 temporary pins.  They would also perform
a procedure to bring her thumb out.  I was wondering:

>

> 1. Has anyone else had this procedure done that can advise us if this is best
or if there is a better procedure

>

> 2.  Has anyone else used Scottish Rite in Dallas?

>

> I just want to make sure that I am taking her to the right place for the right
procedure.

>

> Thanks so much

> Ginny

>




































[Non-text portions of this message have been removed]

Ginny,
My son also goes to Scottish Rite in Dallas, the people there are nothing short
of angels on earth.  He had surgery in March on his feet and the whole
experience, as much as no one wants to go through it, was life changing for my
son.

We have meet with Dr. Ezaki there re: his hands and we have a follow up next
month, but no hand surgery yet.

--- In arthrogryposissupportgroup@yahoogroups.com, "preachertx2002"
<Preachertx2002@...> wrote:
>
> I took my 2 year old daughter Ruthie (elbow and wrist arthrogryposis) to
Scottish Rite in Dallas yesterday and they recommended wrist surgery where they
would reposition her wrist into more extension by removing some bones,
transferring a tendon, and putting in 2 temporary pins.  They would also perform
a procedure to bring her thumb out.  I was wondering:
>
> 1. Has anyone else had this procedure done that can advise us if this is best
or if there is a better procedure
>
> 2.  Has anyone else used Scottish Rite in Dallas?
>
> I just want to make sure that I am taking her to the right place for the right
procedure.
>
> Thanks so much
> Ginny
>

Thanks Lisa.  I would love to continue to hear how your son does.  One thing I
wanted to make sure is that Ruthie will still be able to flex her wrist for
function even after it is positioned into a more neutral resting position.  Is
that what you understand the case to be with your son?
Please keep me posted on his progress as our surgery would not happen until
January.

--- On Thu, 9/24/09, casdog2003 <casdog2003@...> wrote:

From: casdog2003 <casdog2003@...>
Subject: [Arthrogryposis Support Group] Re: Surgery Question
To: arthrogryposissupportgroup@yahoogroups.com
Date: Thursday, September 24, 2009, 1:37 PM













 





                   Hi Ginnie!

Reading your post was like reading what our 2 year old son, Aaron, just had done
here in San Antonio in July.  He also has Arthrogryposis affecting both arms
from shoulders to the wrists.  His left arm was most affected and not used as
much as the right, so our surgeon, Dr. Stace Rust of The Hand Center, did what
you described.  The only thing different was that she released the triceps above
the elbow so his elbow would have more passive range of motion.  We also had the
thumb "released" in hopes that it will be used.  He uses his right
hand/wrist/elbow/ arm all the time and has a good pincer grasp.  His fingers are
also webbed on the left and partially webbed on the right, so he's only been
able to "push" things along and move items to his right where he can then grasp
them.  He was in a full arm cast for two weeks after and then a half cast to
right below the elbow for another three.  He is currently in a splint to keep
his wrist straight and to keep
  his thumb out.  He wears that most of the day and we take it off at home where
we can watch him.



I do have to say that it is a very strange thing to see--his wrist and hand not
facing backwards anymore.  Both my husband and I were taken aback by the sight,
although very happy.  Our surgeon wants to do the same thing on the right in the
next year, but he does so much with the right, that I don't want to take away
that mobility.  He is just now learning to manipulate a fork/spoon to feed
himself.  He does a great job with finger food and started feeding himself by
propping his arm up on the table or his highchair.  I am really hoping that with
more OT/PT his left hand will have better mobility.  We are already starting to
see him move his fingers in a back and forth motion and he's gone back to moving
objects with his hand--a little at a time.



We didn't have anything to compare this with so we just went for it.  Anything
to help him move was worth it.  Our surgeon knew exactly what she wanted to do
with him when he was 3 months old, but said it would be more beneficial at 2 yrs
old, so I guess this is a pretty regular Arthrogryposis surgery.  I can only
vouch for our surgeon/hospital here (Methodist Children's) but can tell you were
were very happy with the results.  Aaron seems pretty happy too.  Please feel
free to email off the boards!  We live in the San Antonio area.  Good luck to
you and Ruthie!



Lisa



--- In arthrogryposissuppo rtgroup@yahoogro ups.com, "preachertx2002"
<Preachertx2002@ ...> wrote:

>

> I took my 2 year old daughter Ruthie (elbow and wrist arthrogryposis) to
Scottish Rite in Dallas yesterday and they recommended wrist surgery where they
would reposition her wrist into more extension by removing some bones,
transferring a tendon, and putting in 2 temporary pins.  They would also perform
a procedure to bring her thumb out.  I was wondering:

>

> 1. Has anyone else had this procedure done that can advise us if this is best
or if there is a better procedure

>

> 2.  Has anyone else used Scottish Rite in Dallas?

>

> I just want to make sure that I am taking her to the right place for the right
procedure.

>

> Thanks so much

> Ginny

>




































[Non-text portions of this message have been removed]

Hi Ginnie!
Reading your post was like reading what our 2 year old son, Aaron, just had done
here in San Antonio in July.  He also has Arthrogryposis affecting both arms
from shoulders to the wrists.  His left arm was most affected and not used as
much as the right, so our surgeon, Dr. Stace Rust of The Hand Center, did what
you described.  The only thing different was that she released the triceps above
the elbow so his elbow would have more passive range of motion.  We also had the
thumb "released" in hopes that it will be used.  He uses his right
hand/wrist/elbow/arm all the time and has a good pincer grasp.  His fingers are
also webbed on the left and partially webbed on the right, so he's only been
able to "push" things along and move items to his right where he can then grasp
them.  He was in a full arm cast for two weeks after and then a half cast to
right below the elbow for another three.  He is currently in a splint to keep
his wrist straight and to keep his thumb out.  He wears that most of the day and
we take it off at home where we can watch him.

I do have to say that it is a very strange thing to see--his wrist and hand not
facing backwards anymore.  Both my husband and I were taken aback by the sight,
although very happy.  Our surgeon wants to do the same thing on the right in the
next year, but he does so much with the right, that I don't want to take away
that mobility.  He is just now learning to manipulate a fork/spoon to feed
himself.  He does a great job with finger food and started feeding himself by
propping his arm up on the table or his highchair.  I am really hoping that with
more OT/PT his left hand will have better mobility.  We are already starting to
see him move his fingers in a back and forth motion and he's gone back to moving
objects with his hand--a little at a time.

We didn't have anything to compare this with so we just went for it.  Anything
to help him move was worth it.  Our surgeon knew exactly what she wanted to do
with him when he was 3 months old, but said it would be more beneficial at 2 yrs
old, so I guess this is a pretty regular Arthrogryposis surgery.  I can only
vouch for our surgeon/hospital here (Methodist Children's) but can tell you were
were very happy with the results.  Aaron seems pretty happy too.  Please feel
free to email off the boards!  We live in the San Antonio area.  Good luck to
you and Ruthie!

Lisa


--- In arthrogryposissupportgroup@yahoogroups.com, "preachertx2002"
<Preachertx2002@...> wrote:
>
> I took my 2 year old daughter Ruthie (elbow and wrist arthrogryposis) to
Scottish Rite in Dallas yesterday and they recommended wrist surgery where they
would reposition her wrist into more extension by removing some bones,
transferring a tendon, and putting in 2 temporary pins.  They would also perform
a procedure to bring her thumb out.  I was wondering:
>
> 1. Has anyone else had this procedure done that can advise us if this is best
or if there is a better procedure
>
> 2.  Has anyone else used Scottish Rite in Dallas?
>
> I just want to make sure that I am taking her to the right place for the right
procedure.
>
> Thanks so much
> Ginny
>

Check out http://www.shrinershq.org/hospitals/main/  100% free service. They
will transport you for free too. Excellent service. They have dealt with
arthrogryposis. Only do the surgery if it will increase her function. My
daughter has thumb in palm but she is functional. If they bring my daughter's
thumb out (which shriners did not recommend) she would have looks and no
function



--- In arthrogryposissupportgroup@yahoogroups.com, "preachertx2002"
<Preachertx2002@...> wrote:
>
> I took my 2 year old daughter Ruthie (elbow and wrist arthrogryposis) to
Scottish Rite in Dallas yesterday and they recommended wrist surgery where they
would reposition her wrist into more extension by removing some bones,
transferring a tendon, and putting in 2 temporary pins.  They would also perform
a procedure to bring her thumb out.  I was wondering:
>
> 1. Has anyone else had this procedure done that can advise us if this is best
or if there is a better procedure
>
> 2.  Has anyone else used Scottish Rite in Dallas?
>
> I just want to make sure that I am taking her to the right place for the right
procedure.
>
> Thanks so much
> Ginny
>

Scottish rite is a great hospital that's were they been seeing my son since he
was 3 days old . I really recommend u put your daughter in there hands although
it can be a bit scary the surgery and all but I don't regret making that choice
for my son . He had surgery to realease the muscle tendons at 7 months and 3
surgerys on his right arm and both feet at 14 months . I just think the doctors
at Scottish rite are angels in disguise , my son is 10 turning 11 in October has
arthrogryposis on his arms and legs and he is walking and does alot of things on
his own..I really really love Texas Scottish rite !

Sent from my iPhone

Has anyone with an infant that has arthro ever experience swelling at all? If
so, did they know the cause and what course of action do you know they took,
Thank you Danette