Arthrogryposis / Contractures in Arms & Legs

[Cath78]

Just wondering if anyone has any experience or knowledge on Arthrogryposis. There are many different forms or serverities of this. My daughter had (still has!) focal arthrogryposis - where she was born with stiff elbows and knees. The elbows are better at 9 months but not the knees (but she does had congenital hip dislocation and has been in some time of hip brace or plaster since 7 weeks of age). But the doctors still think they should be straighter than they are. Just thought people might know some more about these type of contractures.

Hello Cath,

I havent been on belly belly for a while and was just having a surf when I found your post.

My brother is 30 and has Arthrogyphosis, his is very severe and my mum has been working with this for about 29 years now and can probably help.

My brother is very badly deformed and doesnt have even one functioning joint.
He is mentally as bright as bright can be no brain damage what so ever.

How severe is your little chloe?

Hope this isnt too obtrusive. This is a bad disablity, My brother has been confined to a wheelchair for most of his life. I have watched this all my life, Hes my older brother LOL. There is some great development and some terrific doctors now days!!!

Let me know if I can be of any help at all?

lindie

[Cath78]

Thanks Theresa and lindie for your replies.

lindie she is no where near as severe as your brother. your mum sounds like she has done a lot of work with him. at the moment the legs (knees) cannot open out straight - they say she has 35 to 45 degrees on each leg and we want to get to zero degrees. we saw the orthopedic surgeon on fri for her hip and he said we can leave the brace off and now we'll work on straightening out her knees :eek: he talked about traction but the physio that was in with us suggested a type of splint. which sounds much better than traction!

they aren't sure what it is but my nuero said it was focal arthogryposis so who knows. at least the arms are better (not to zero degrees but close) and now we are brace free we can start on the legs.

what treatments did your brother have?

Hi Cath,

Sorry for my VERY late reply, pretty busy christmas, My Brother has had HUNDREDS, and you think im kidding....No REally HUNDREDS of operations, I dont know if you remember Quentien (cant remember last name off hand) he had brittle bones was all over the news he currently interviews the famous peoples... Well my brothers ops started around the same time as his, they were both pretty popular people, My brother had about 50 operations to start releasing tendons, which is what they thought was the problem 25 years ago and reattaching them to different parts of the bones, It was pretty crude with no results at all, then after that he had his hips broken and realligned to fix what they thought was tight hips and missing ball joints BUT of course they were there and It wasnt tight just most of the muscle in his legs wasnt there or wasnt formed properly.

Well I guess I could keep writing a novel but many years ago they really didnt know and my mum and grandparents had dreams that he would walk and be normal as he had everything just in odd positions, appart from his hands which are missing all muscle and tendons my only way to get you to picture these is, Imagine chicken feet attached to your babies wrists....Not pretty. But there wasnt many cases and they prepared my mum for mental retardation, basically vegitablism. Naturally my mum knew better and he could hold conversations at 1 year old, hes smarter than us all!!!!

Has a HIGH paying job with telstra!!!! Better than me LOL.... But he had tonnes of issues and he was a test case really they just operated and operated and nothing worked, He had the best equiptment and aids but really nothing worked all limbs are now totally fused straight he can sort of type and he is brilliant at getting around on the floor like a crab. I know you are not thinking I am very compassionate, But to me he is totally normal and hes been like this my whole life, I loved pushing him around, getting him stuff, we would do all types of games and really had a great childhood, He was in and out of our catholic hospital all my childhood so It became the norm to me, He has never had children but is wonderfull with them we are 2 of 4 and he is the eldest so he had practice, My mum used him like a pram when we went out and I just got so used to the staring people that now I dont even think about it...

But your little chloe sounds so minor...And medical advancement is just quadrupled since he was born your luck is so great that its not an issue, But this is rare and there is a group that you can join, I will reasource it off Mum that has stories and information on it that might be helpfull, I have recently spoken to Mum about your little girl and mum was just relieved she was so minor.

All the best Cath I hope you do get to read this and it doesnt just slip into the Belly belly dark hole LOL!!!

Lindie

[lilymunsta]

dear Lindie
Bless you for your message on bellybelly. You are all so brave and your brother has the good fortune of having a great sis like you. I don't have kids and I don't know anyone with Arthrogyphosis. I am a masseuse and sometimes I get time-waster phone calls from people who fake stuff. Don't ask me why. Maybe it's part of their fun. I had a prospective client who phoned and said he had Arthrogyphosis but his call never amounted to anything. I suspected he was having a laugh BUT I will never really know for sure and it troubled me. I found this site while trying to learn more about Arthrogyphosis. I wish you the best. You are all special. Regards from L. x

[marylaffo]

My son Declan was born in December 2008 and has arthrogryposis.His elwobs are extented and have very little bend, same with knees. Both hips are displaced and the socket is shallow. Surgery is beind discussed but I'm not sure what to do. Any works of advice or stories that will give me hope would be greatly appreciated!

Thanks Mary

[Kate07]

Hi Mary

Have you heard of the Arthrogryposis Association of Ireland? They have stories on their website, and a list of regional contacts. They may be able to hook you up with someone who lives close who you can talk to.

Arthrogryposis Ireland - Home

take care,

Kate

[sakoon]

my son was born with arthrogryposis on 5 march 2009. I have 2 sisters with arthrogryposis and 1 brother, but he passed away at 18 yrs of age, he had it very severe and other problems like severe asthma. My sisters less severe, very independent, just can't bend their knees, elbows fully and can't straighten fingers. My son is very similar to my sisters.

We are going to the limb clinic in Sydney childrens hospital and seeing genetics docs in Rpa hospital as they are a bit puzzled how my son got it if I am perfectly healthy. They have not found the gene for this condition and they think possibly I was carrying the gene and you only need one copy to get the condition

We are doing physio and some splints for his hands. No talk of surgery. Mysisters are 25 and 18. They had surgery on hands 10 yrs back but was unsuccessful. My son also has right droopy eye lid so getting his eyes checked every 3 months.

As you can imagine my parents have plenty experience as 3 kids have arthrogryposis

Will write more when I get more time.

[bec-s]

Hello,
My son has arthrogryposis in his feet and knees, I want to learn more about it and get a second oppinion on the treatment he is receiving, do any of you know any one in Melbourne? (other then who he see's at RCH)

cheers

[gabrielslife]

While there is no cure for arthrogryposis, symptoms and deformities may still be alleviated with various methods due to multiple contractures and weakness. Early vigorous physical therapy to stretch contractures is very important in improving joint motion and avoiding muscle atrophy. Patients with amyoplasia or distal arthrogryposis respond well to physical therapy with excellent functional outcome. Splints can also help stretch joints, especially at night. Orthopedic surgery may also be able to relieve or correct joint problems. Joint manipulation during the first few months of life may produce considerable improvement. Orthotics may help. Wrist flexion deformities may be treated with tendon transfers and bony procedures to change the alignment of the wrist. Surgery may be needed later to align the angle of ankylosis, but mobility is rarely enhanced.

[aimee_o9]

hi my name is aimee my brother had arthrogryposis and im doing a assignment about it for VET aged care and disability and i was just wondering of any good websites to find statistics they have to be austrailan sites

thank you so much

[bestgirlie09]

my name is sasha i have a 9 month old lil girl called skye who has arthrogyphosis (amoplasia) (sorry for spellin mistakes) she has fixed elbrows and flexed wrists and stiff shoulders.
skyes in night time splints for her wrists which makes her very restless at night is there anyway i can make her more comftable?
is there anything in the uk that is done bout fixed elbows? i no there is alot of things done to help with wrists, hips, knees ect but cant find anything bout fixed elbows no one can be seem to answer that question at appointments either does anyone else no bout this type of thing?