Arthrogryposis

Thread view:

Enable EMail Alerts

Start New Thread

Thread rating:

Bekki - 16 Jun 2004 04:15 GMT

Hi everyone-I have a 5 month old little boy and when he was
born, the second thing I heard the doctors say was "his arms are
stiff". His wrists were so flexed that his palms touched the
underside of his arms, his elbows so contracted they weren't
even movable, and his shouldars also very contracted. No one
knew what is was, living in a small town and all. He's been
seen by orthepedics, neurologists, heart doctors,
geneticists...you name it. Finally we took him to Shriner's
Children's Hospital where he was diagnosed with Arthrogryposis,
the type he has is Amyoplasia.
I just have a couple of questions to anyone who knows about
this: His left elbow now is only able to flex at a 20 degree angle and
he isn't able to flex it on his own. The OT he's working with at
Shriner's said that if he isn't able to move it at a 70 degree flexion
at least by the time he's 18 months old then he'll have to have
surgery. We've been propping him and doing ROM with him to try to
increase the movement. I just wanted to know if anyone has any
suggestions on other ways to increase the ROM in his elbow.
Also he's working with some geneticists right now to try to figure
out why it is that he was born with this. They don't know of any
testing to find out if it's due to genetics...so I just wanted to know
if anyone knows of anything??
Thank you very much for taking the time to read all of this. I
know
it's a lot! It would be really nice to hear from anyone. Thank
you again.

Bekki

I always dreamed of having "the perfect" baby and you know what? He
is...

Reply to this Message

debbie m. - 16 Jun 2004 08:03 GMT

Bekki,

First of all welcome to the group. This is a very supportive and
informative place.
I also have a special needs daughter. We know of a wonderful young woman
who has something similar to what you describe as your son having. She is
now in her twenties and she is a joy.

I wish I could answer your question about the ROM but don't know anything
about that area. I hope you find the anwers you need for your son. You
sound like wonderful and attentive mom.

debbie m.
http://www.angelfire.com/ga2/angels1/

> Hi everyone-I have a 5 month old little boy and when he was
> born, the second thing I heard the doctors say was "his arms are
[quoted text clipped - 27 lines]
> I always dreamed of having "the perfect" baby and you know what? He
> is...

Reply to this Message

Nann Bell - 16 Jun 2004 14:01 GMT

I have no suggestions but the ones from others sound good. If there is some
way of applying warmth to the joints before and even during the exercises it
might help. If not the water idea, maybe warm towels wrapped around?

I hope you all find more answers soon. What a sad and frustrating situation
for all of you.

>
> I always dreamed of having "the perfect" baby and you know what? He
> is...

<big smile> sounds like he did pretty good job of choosing his mom.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Reply to this Message

Beki - 18 Jun 2004 04:51 GMT

Hi Bekki,

I was referred here by a friend of mine. I think she got a giggle as
our names are similar :) My son, Jason was born with arthrogryposis in
May of 2000. I heartily suggest joining the two arthrogryposis lists
on Yahoo groups. They are Avenues and Avenues2. I dont know where you
live, but the two clinics that everyone seems to want to go to out of
the six that have an arthro clinic in the country are at Seattle
Children's Hospital and A I Dupont. They can do a complete work up and
they can give you all sorts of ideas.

Amyoplasia is one of the three types of Arthrogryposis. The Distal
form is the only one that is genetic. My son and husband have one of
the distal forms. The other form is neurogenic.

As far as the rom goes, one thing that I have found to help loosen
Jason up is put him in a bath of warm water. his muscles relax more.
Do the Rom in the tub and you will get a little more motion out of
him. Also, do the rom as play as much as you can. We did rom at every
diaper change, and then we made games out of it to get more rom work
in. Jason has a web page if you want to check it out at
http://babiesonline.com/babies/j/jasontanner/ I am not sure if the
photo gallery is still there or not. Babies online had a hosting
problem for a while. Feel free to email me with questions.

Beki

Reply to this Message

Squirrely - 20 Jun 2004 03:50 GMT

Welcome to our group Bekki.

My heart goes out to you and all you are dealing with. You hang in there and
take care. Hugs to you.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Hi Bekki,
>
[quoted text clipped - 54 lines]
> > I always dreamed of having "the perfect" baby and you know what? He
> > is...

Reply to this Message

Squirrely - 20 Jun 2004 03:52 GMT

Bekki,

Welcome to our group. I am sorry you have to be here.

I am so sorry and my heart goes out to you to have to be dealing with your
sons illness. I am sending prayers and good thoughts your way. Hugs to you.

You take care of yourself so you are better able to help your son thru all
this.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

Reply to this Message

Bekki - 22 Jun 2004 04:13 GMT

Thank you all very much for everything. Aidan (my son) is going to
Shriner's Children's Hospital in Minneapolis right now and they have
an Arthrogryposis Clinic there as well. He's seeing a doctor that
specializes in this disability too, so I'm very grateful for that.
I asked his therapist about doing the ROM in the water and she said
that's a good idea, so we'll have to try it out! Thanks for that
advice! His therapist gave me a vibrator to use on his arms to get
his arms to be able to bend, but it seems like it does just the
opposite. For example, I have to use it underneath his upper arm to
get his elbows to bend-but when I do it he straightens them out.
Hmmm? I don't know about this.
Beki- I looked at your website, you're son is very cute!
Thank you all again, I'm glad to know there are people out there
who care.

I found this on a website and I wrote it down, I just thought that all
you might appreciate it (it made me cry):

"Yes, there is a woman I will bless with a child 'less than perfect'.
She doesn't realize it yet, but she is to be envied. She will never
take for granted a spoken word. She will never consider a step
'ordinary'. When her child says 'momma' for the first time, she will
be present at a miracle and know it! I will permit her to see clearly
the things I see- ignorance, cruelty, and prejudice- and allow her to
rise above them. She will never be alone. I will be at her side
every day of her life because she is doing my work."

Reply to this Message