about Beals syndrome

[Guest guest]

Hi , my son Santi also has Arthrogryposis and what appears to be Beals.

It is also interesting because his joints are stiff, where with beals they tend

to be very flexable and loose. It is almost complete opposites to have AMC and

CTD because AMC usually makes the person very tight in all the joints and CTD

are usually opposite. CTD are very difficult to diagnose and often impossible,

thus they attempt to treat the symptoms and problems as they occur. I would

recommend getting an echo of the heart and have the eye exam, they should be

dialating the eyes 2 days prior to get a good look inside. I remember the

neurologist mentioned his CTD was prenatal, which tend to be more sever upon

birth. While in the womb Santis CTD prevented him from moving much, he was too

weak. When a fetus does not move, often they are born with AMC, which literally

means shortening of the tendons from lack of movement in the womb. It is often,

not always, a secondary problem, not the

primary problem. Santis primary was his CTD that caused him not to move. You

might want to talk to your neurologist and ask if he/she thinks that the

stiffness might have been caused in the womb from lack of movement. Just to let

you know a little about Santi, he had a 50 degree curve, now in the 30s after

several POP casts, lumber curve to the left, also has asatigmatisma in the eyes,

club feet (operated on and due to operate on the left again) contractures in the

extremities, ingenial hernia, undesended testicles, high palete in mouth (seeing

speech specialist), hypotonia of all the muscles, at this moment his heart is

perfect, and no known neurological problems, appears to be all muscular... also

has classic bent ears like Beals syndrome, and arachnagalia, wrong spelling I am

sure.. (spider long fingers) also typical of beals... Good luck and if you need

anyone to talk to, we are all here for you.. Take care,

Kelli and Santiago

tovi39@... wrote: I know that a characteristic

of Beals syndrome is contractures of joints.

Connie

Re: Connective tissue disorder

This sounds interesting to me becuase my daughter has hyperextensive elbows, a

heart murmur, bony abnormalities and i think her skin is pretty soft. However

her main issue is her contractures (very tight joints). Does Marfan's or other

ctd's have stiffness? All i know is that the condition Jazmin has is very rare,

so i assume its not marfans, maybe just some similarities?!

Connective tissue disorder

>

> >

> >How do they diagnose this? What tests are done?

> What are the typical

> >symptoms that your kids have? When was it apparent that

> your child had

> >something like this? Grace has been somewhat diagnosed

> with an unknown

> >peripheral nerve disorder and they can see the damage in the

> nerves

> >through an EMG test. High-dose steroids and another

> immunosuppressant

> >drug are helping her, although very slowly, regain the use of

> her arms

> >and hands.

> >

> >How is CTD treated?

> >

> >Thanks,

> >Cherie

> >

> >

>

>

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

>