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Looking for parents of kids with Arthrogryposis!
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Mom of Josiah
Posted 2006-09-06 3:59 PM (#22694)
Subject: Looking for parents of kids with Arthrogryposis!



Member

Posts: 5

Location: Near Louisville KY
Hi I am NEW on here & have done a search but I've not come up with a great deal of people...So can you please POST a message if your child has Arthrogryposis or Mutiple Petergyium, along with the childs AGE, & locations of the joint contractures, mobility? surgeries? Main struggles?

My son Josiah, just turned 3 on Monday & his contractures are in his knees, shoulders, wrists, hips? we're told....

He has club feet & low muscle tone in his arms...Rolling is his main mode of transportation, which of course is jolted after the VEPTR surgery. He has started KNEE WALKING, as long as he has help. He sits up & was scooting forward on his bottom until he had his testicles undescended & a circumsision on 8/10/06 last month,OUCH! they were supposed to do the VEPTR too, but that surgery took 4 1/2 hrs, so they canceled the VEPTR till 9/1/06!

Anyway, I just want whats best for him, & I want to know how others are being cared for, we've had NO work on these Legs whatsoever...NOW they're talking about EXTERNAL FIXATURES...which sounds painful....Please advise if your informed on this! Thanks, LaDonna (Mom of Josiah)

Surgeries:

6/14/05 G-tube (Riley: Indianapolis IN)
7/10/05 Tracheostomy (Kosair: Louisville KY)
7/26/05 FIRST VEPTR (St. Mary's Richmond VA)
1/24/06 First VEPTR Expansion (St. Mary's Richmond VA)
8/10/06 Undescended Testicles, Circumcision (Was supposedly naturally circumcised at birth so DR wouldn't do it!)
9/1/06 Second VEPTR Expansion (Riley: Indianapolis IN)
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Connie, Billy's mom
Posted 2006-09-06 5:30 PM (#22695 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Extreme Veteran

Posts: 441
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LaDonna, my son does not have any contractures, but I had a question about the leg treatment they are recommending for Josiah... did you mean fixators? Like the Ilizarov fixator? http://www.medscape.com/content/1998/00/40/84/408492/art-mos4903.fi... That is a picture of one type of fixator... My son has a leg length discrepany, and these fixators are used for growing new bone...

Here is a Google link searching fixator and arthrogryposis with some links for you to check out... http://www.google.com/search?hl=en&ie=UTF-8&sa=X&oi=spell&resnum=0&...

Welcome!
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Jennie-BriannasMom
Posted 2006-09-06 8:20 PM (#22700 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Elite Veteran

Posts: 952
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Location: SanAntonio TX(formerly Hammond Indiana)
Hi, welcome.
Brianna does not have the above mentioned, but I ama friend of another rib kid who's daughter is also Brianna. This Brianna has arthrogryposis. Her mom, April, doesn't post much, but I will tell her about this post and have her go online and take a look.
her Brianna is 7 years old, almost. She has been a rib kid since age 2.
As for a fixator. ...... It is not just used to grow new bone. It is used for many different reasons.
Afetr 30+ fractures in myleft foot, and the bones now being no where where they should be, and being casetd off and on ( more on than off) for 2+ years, I was offered the option of surgery inbcluding a fixator.
I almost did it. In fact, I would have done so, except that it would have automatically put me non weight bearing and in awheel chair for 6-9 months. And, they would had to of repeated the fixator process every 2 or so years.
I opted out of it, and went with a custom made walking boot instead ( like a removeable cast).
But anyway, that really has nothing to do with this now does it ?!?!??!
Just wanted to say that fixators are not just used for bone growth, which brings me to this point.
Brianna has multip[le things going on. With her severe curvature throwing her entirte skeletal alignment off, she has developed flat feet that rotate outward, more so on the right leg.
An option for her, is fixator treatment.
We arent looking at the near future, becuase right now, EVERYthing, including her possible last expansion, and definitley her final spinal fusion, is all on hold, pending her visit to the neurosurgeon to treat the Chiari MAlformation recently diagnosed.
I hope you find some answers, and if anything, we are all a wonderful support system for you here.

And, like I said, I will get in contact with the other Brianna's mom, April and let her know you posted.
I would you tell you to look up her email addy on her profile, but her email has changed.
Ok, Im getting way too lomg here!
hAGD!!
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Mom of Josiah
Posted 2006-09-06 10:35 PM (#22702 - in reply to #22695)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Member

Posts: 5

Location: Near Louisville KY
Yes, that's what it is...Thanks for the links....Tell me more about your sons eating issues? Josiah eats what HE want's he loves Chilli Cheese Fritos, cherios, chips dome cookies, onion rings french fries, but other things he acts like he's gonna gag, or that he's position wrong & BLAH, I always though his spine was pressing on his esphogus, but who knows! Your son is a cutie! Thanks for posting, LaDonna
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kim'smom
Posted 2006-09-09 10:17 PM (#22766 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Regular

Posts: 72
2525
Location: Monroe City, MO
Hi Josiah's Mom. I have a daughter that will turn 4 in one month that seems to have much in common with josiah. She has a tracheostomy and g-tube like Josiah although these have been in place almost since birth. Her underlying diagnosis is congenital muscular dystrophy which pretty much boils down to very weak muscle tone. She was also born with arthrogryposis so i was told. Her hands and feet were the most effected. We had casts and hand braces for a long time and they seem to be much improved. Her club feet are a different story. We also did a lot of casting in the early days for that. Then at 16 months she went thru a heel cord release surgery (let me know if you don't know what that is) and then casting and special shoes (with the bar). However, since she doesn't use her feet or bare any weight on them, they are really curving back up. we have set a tentative date of next fall to due our first veptr surgery and will probably have to do another foot surgery at the same time. Fixators have never been mentioned. now whether this is due to arthrogryposis or just lack of use, her hips, knees, elbow, and shoulders all have contractions. nothing too severe yet and hopefully with adequate stretching we can keep it that way!

kimberly also has feeding issues. For a while we were able to feed her cheeto puffs for fun, but now she doesn't want them. we are feeding her soley by the g-tube but can do "pleasure feeding". she has passed a swallowing study so we know she can do it, now it's just getting her to want to. She does like to pretend she is eating so that's a start. Well, i don't think this probably helped much, but i like to hear about others situations so....

Josiah's a cutie, i wish i could figure out how to add a picture to my postings!! maybe someday.
Mary
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Collin's Mom
Posted 2006-09-09 11:01 PM (#22767 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Regular

Posts: 87
252525
Location: Springfield, MO
Hi. My son, Collin, is 20 months and has Arthrogryposis as well as Jarcho-Levin syndrome. He has two rib to rib Veptrs. He has just started crawling in the last few months. We recently (May) talked to one of the other (not his veptr doc) ortho doc at Children's Mercy about his legs. He has severe contractures at the knee and club feet. We heard the same thing about using External Fixtures. We were surprised as we thought we didn't really have an option. Dr. Sinclair said he would recommend surgery at age 4 and as I recall the whole process for both legs could take up a year. One leg at a time with slow stretching.

Hope this help. Feel free to email me directly if I can offer any other answers.

~Sarah
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josiejean
Posted 2006-09-10 5:31 PM (#22769 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
VEPTR member "Tina" has a son with Arthrogryposis. she doesn't post very often at all but you can send her private massage to reach her and her husband (Brian). Their son's name is Brendan.
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Zoes Nana
Posted 2006-09-10 6:00 PM (#22770 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
WELCOME TO THE VEPTR BOARD...
GREAT TO HAVE YOU, AND I KNOW YOU WILL GET THE INFORMATION
YOU ARE LOOKING FOR ALONG WITH SOME GREAT SUPPORT...

GOD BLESS...
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shannon p.
Posted 2006-09-10 8:59 PM (#22772 - in reply to #22694)
Subject: RE: Looking for parents of kids with Arthrogryposis!



Extreme Veteran

Posts: 424
100100100100
Hello,

My Caroline has arthrogryposis. She is 6 yr's old. She just had her first VEPTR surgery in San Antonio 8-15. Caroline also has Pierre Robin sequence (craniofacial) and is trach and G-tube dependent. Caroline's had about 16 surgeries in all, some orthopaedic. My e-mail address is pierce7717@bellsouth.net.

Take care,
Shannon in GA
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shannon p.
Posted 2006-09-10 9:01 PM (#22773 - in reply to #22769)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Extreme Veteran

Posts: 424
100100100100
Oh, we had the pleasure of meeting Tina and gang while we were in San Antonio last month. What a wonderful family and oh, my, what a resourceful mom! She was awesome!!!!

Shannon
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josiejean
Posted 2006-09-10 9:33 PM (#22774 - in reply to #22694)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
that's Tina!!!!!!
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Connie, Billy's mom
Posted 2006-09-11 1:35 PM (#22782 - in reply to #22702)
Subject: Re: Looking for parents of kids with Arthrogryposis!



Extreme Veteran

Posts: 441
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"Tell me more about your sons eating issues? Josiah eats what HE want's he loves Chilli Cheese Fritos, cherios, chips dome cookies, onion rings french fries, but other things he acts like he's gonna gag, or that he's position wrong & BLAH, I always though his spine was pressing on his esphogus, but who knows! Your son is a cutie! "

 

Billy has delayed stomach emptying so his stomach always feels full.  Because of that, he's pretty selective in what he wants to eat, if it's something he doesn't like, forget it.  Only room for the good stuff, LOL...

He also has gastric reflux and a highly sensitive gag reflex, so if something goes on the tongue wrong, or sticks to the roof of his mouth, or he decides he doesn't want it in his mouth, up it comes, and everything else in the stomach, ugh...  We learned early not to force him to eat things, it's just not worth it...  ALthough we do coax and threaten that he needs to eat a certain amount (like he HAS to finish his three "milkshakes" of carnation instant breakfast each day, plus eat a couple bites of something at each meal) but we usually let him determine what he'll eat. 

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AlexandraC88
Posted 2013-04-21 2:46 AM (#41719 - in reply to #22694)
Subject: RE: Looking for parents of kids with Arthrogryposis!


New User

Posts: 2

Hello, my name is Alexandra I'm 25 my daughter was born with arthrogyposis she is eight months old now and was six weeks early she attends appointments at Texas Scottish rite hospital and I have ECI( early childhood intervention) come to my house 4 times a month for physical and occupational therapy also I just started taking her to excel pediatrics any questions you may have I'd be more then happy to try and help you can write back on here or email me at AlexandraCrockett88@gmail.com Have a blessed day.
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AlexandraC88
Posted 2013-04-21 2:49 AM (#41720 - in reply to #22694)
Subject: RE: Looking for parents of kids with Arthrogryposis!


New User

Posts: 2

Hello, my name is Alexandra I'm 25 my daughter was born with arthrogyposis her upper and lower extremities are effected she is eight months old now and was six weeks early she attends appointments at Texas Scottish rite hospital and I have ECI( early childhood intervention) come to my house 4 times a month for physical and occupational therapy also I just started taking her to excel pediatrics any questions you may have I'd be more then happy to try and help you can write back on here or email me at AlexandraCrockett88@gmail.com Have a blessed day.
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