Walking

[kindacrunchy1]

I have been on this site for a while, but have never posted...I have a 3 year old son, named Jackson, who was born with Arthrogryposis Multiplex Cogenita (AMC). Basically, "lots of crooked joints at birth." These joint contractures develop before birth (prenatally) and are evident at birth (congenitally). A newborn with arthrogryposis lacks the normal range of motion in one or more joints. Because of his condition, he does not walk or stand independently (he can only do so in a stander or gait trainer). I believe his biggest issue with doing either of these are his weak glutes...so I was wondering if anyone else has a kiddo with these issues, and if so, what treatment(s) have been successful? Thanks!

[jennabean]

My son who is 2 has distal arthrogryposis and his clubfeet were severe and atypical. He has hypotonia but I suppose that comes with arthrogryposis...

He has juuuust started to take a few steps but I think full blown walking is still a ways off... he's so wobbly and for him the weakness seems to be in his calves and those itty bitty feet of his That, and he just doesn't seem to have all the strength he needs for balance.

We've had PT since he was little(but are on a summer hiatus) but I'll be honest... for us, since my son is delayed in everything (no speech yet either) I think he just seems to do things at his own pace... we loved our PT and she gave us good info, etc. but I'm still not convinced any of it made a difference in my sons ability to reach milestones. There is no rushing this kid

Not sure if any of this relates at all to your situation and not sure how severe the contractures are in your case but just wanted to share my own story and make contact with another momma in a similar situation

I'd love to chat more if you're around, take care...

Jenni

[sncmom]

athetoid cp anyone?

Just wondering if there are any other moms out there with kiddos like mine.

[KempsMama]

Just thought I'd share with you ladies-my wonderful DH was born with AMC. Having done research when we first started dating, I know there's not a lot of stories out there of adults with the condition, so thought I'd put us out there if you ever needed the resource!

[jennabean]

oh wow, that's very kind of you... thank you

do you mind if I ask how severe your DH's contractures were/are?

my son has the distal form which is luckily very mild but his delays in walking and speech are substantial... I'm assuming this is from the low tone, but he also has another condition, basilar invagination which we're unclear as to how its affecting him... perhaps not at all at this point?? he's a little puzzle, that's for sure a cute puzzle though...

did your husband have developmental delays? thanks so much for offering your info, its greatly appreciated

jenni

[KempsMama]

DH's contractures in his lower extremities were severe. He has had his ankles and knees fused, and he had a surgery to correct out turned feet. He also had to have his hip muscles clipped on multiple occasions. He walked with crutches until puberty, when his genetics caught up with him-he comes from a line of broad chested top heavy bulky men, and those genetics combined with his AMC made it dangerous for him to continue with the crutches and braces, he was damaging his spine.

His wrists have also been fused, and his radial heads don't grow in socket.
(I've been told the fusing isn't something typically done in AMC patients now.)

So he does require the use of a wheelchair. However he is extremely independent. There really isn't anything he can't do because of his AMC, except walk. When we first started dating, he used to walk up and down stairs on his hands to impress me. Now days, he's 30, and his starting to have secondary issues with his spine, partially due to the damage done when he was younger, partially due to how active he is despite his condition (think riding a hard tail motorcycle, going down flights of stairs in his chair, crazy stuff like that) and partially unrelated to his AMC or anything else.

As far as developmental delays, according to his mother he was right on track for everything, just in his own way-since he never could walk on his own, for example, he invented other ways of moving around.

Ask away-any questions you may have! I don't know a lot about the medical procedures he had has a child, and honestly I don't think much of it would apply today since orthopedics have come so far since he was born. Heck, OBGYN care has come along way-my MIL didn't know anything was wrong until he presented frank breech and the did an X-Ray!

[KempsMama]

Oh, and the itty bitty feet made me smile. DH wears kids sizes to this day.