Curious if anyone has a child like mine with this condition...

[RoseJeans]

Hi everybody!

I'm a newcomer and have decided to ask if anybody here has had experience with or knowledge of ARTHROGRYPOSIS?

My DD was born with it in 2005 and we regularly visit the specialists to check in.

It's a difficult case, she doesn't walk flat on the ground, her muscles are very limited in movement and it won't be fixed for many many years yet, which doesn't stop her from being amazing!

I was just wondering if any mums here have a child with the same condition or similar with either club foot, muscle congentia etc?

 

[mummy2o]

My son was born with a club foot, but with the treatment he recieved he's got a perfect foot, one of the best his specialist has seen. He still has yearly check ups. One leg is longer than the other by 1/8 of an inch I believe, but its not drastic enough to notice or do anything about. He was behind in walking, jumping, skipping etc and he runs awkward, but that could be due to his autism also. He takes everything in his stride though, which is why I love him.

 

[RoseJeans]

That's great to hear he now has it perfected! How old is your son Mummy2o? Did they diagnose why he was born with club foot? Genetics etc

Unfortunately the only way to rectify my daughter's condition is by breaking her bones, removing some and replacing with wire. It's not going to be a quick process and the specialist is on the other side of the country!

To top it off it's also in both hands/wrists too.

 

[mummy2o]

My son is 8. They found out at my 20 week scan and confirmed this at the follow up scan at 22 weeks. In between was my cousins going away party as she moved to Australia for a while and it turns out that she was born with a club foot. So we refused further testing and put it down to genetics. We just happened to get luck and had a great consultant. I know some cases it doesn't go well and its better the foot to be amputated altogether!

I'm sorry your daughters process isn't as easy. Have you spoken to her about it to see what she wants to do about it? I guess she's coming up to all the peer pressure age also, so I can't imagine what she's going through.

 

[RoseJeans]

How does your son cope now in terms of peer pressure etc? Does he have scars or did they correct it all via casting?

As for DD, I didn't have scans until my 19th week due to not knowing I was pregnant until then! So when she was born it was quite a shock to be diagnosed, when they told me that evening (she was born at 7:52pm) that we needed to go to the children's hospital in the city the following morning, did I jump off of that bed right away after natural birth or what! I refused to leave her side and there were no midwives where I was going. I had to be strong though.

So the first few weeks in the neonatal ward were quite a blur. I remember a lot of catscans, xrays, blood tests, tears, lectures, the whole shebang and it seems her hips or spine were not an issue and no cleft palate which can be associated with it, thank goodness. Her brain is fine too, so we tested and both my husband and I carry the certain gene (1 in 34,000 girls/1 in 18,000 boys). If we'd been with anyone else it probably wouldn't have happened!

As for her feelings on it, it's an interesting concept she's come up with. You see, her hands have 'healing' powers. And when asked to correct them she said it's only her feet she wants fixed so she can run faster, but (and I quote) "God gave me my special hands to heal and if they change them it will break my healing power."

She copes very well! I'm so proud of her, the way she handles it all in her stride, if people ask her about it, she replies with, "I don't know any different so I'm used to my special feet and hands". She has such a magical personality.

It's weird actually, I haven't ever written this down and yet here I am. Thank you for reading and sorry for the long reply! xx

 

[kosh]

hi I work in the genetics of neuromuscular diesease. my bosses are highly renowned in the UK and one of them specializes in arthrogryposis amongst other NMDs. Is there anything I could help with?

 

[RoseJeans]

Hi kosh!

Thank you so much for your post!

Well the DRs here have said that they've aren't going to attempt anything until 'the pain is unbearable' for her A part of me thinks it's because it's the public health system and if I had the $ to take her elsewhere they may be able to start the process of correction.

I've researched and haven't seen much in the way of positive outcomes, but that could be because it's a rare condition. So really, if you have any stories at all of difficult cases like DD I'd love to hear them!

 

[kosh]

Apologies I never replied!
I will ask teh clinicians and get back to you!

 

[alibaba24]

She sounds like an amazing little girl x