I have no info about this. But I know a lot about g-tubes. My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed...
2631
Brenda Summers
i_m_summer
Dec 5, 2008 9:44 pm
I have a son, 20 with AMC who has been tube feed his entire life also. Brenda ... From: AMNCE <amnce@...> Subject: [Arthrogryposis Support Group]...
2632
Beverly R Hanset-Burch
beverlyhanse...
Dec 5, 2008 9:57 pm
I am looking for ways to get my daughter to eat orally and not always be tube dependent. Currently her jaw only moves so much. It is stopped by her back teeth...
2633
Brenda Summers
i_m_summer
Dec 6, 2008 5:49 pm
Jeff eats by mouth , the tube is for medicine, he started of not eating but by the time he was four he could eat everything by mouth. He has a limited...
2634
Beverly R Hanset-Burch
beverlyhanse...
Dec 6, 2008 5:55 pm
Thanks for your response. My middle son is named Jeff! So Jeff didn't have a weak swallow associated with muscles but rather bone issues? Bonnie loves to fish....
2635
amnce
Dec 7, 2008 5:47 am
My daughter has weekly feeding therapy -- it's a subspecialty of speech therapy. Before we started it she had to pass a swallow study. That's basically a video...
2636
Beverly R Hanset-Burch
beverlyhanse...
Dec 7, 2008 3:02 pm
Bonnie cannot pass a swallow study. Her swallow is too weak and delayed. If she could swallow, she would eat. She tries to eat everything. As far as feeding...
2637
shortlittlestoner
shortlittles...
Dec 23, 2008 1:10 pm
I'm 19 years old, born with arthrogryposis. I can't bend my knees all the way only 45 degrees or 40 degrees. I have other phisical problems but they dont stop...
2638
calsie@...
calsie_mom
Dec 23, 2008 4:42 pm
We take our daughter to Dr. Robert Fitch at Duke University Hospital in Durham , North Carolina. He is absolutely the greatest. She has also had surgery by Dr....
2639
pipkin55
Jan 11, 2009 3:08 am
Hi. My daughter is 10, has AMC and wears AFOs. She's sposed to wear them 24/7 but b/c of skin issues we have discontinued night use temporarily on her...
2640
Doris Heckert
dijdheckert
Jan 11, 2009 3:14 am
What worked for us was domboro---mix it following the directioms on the box...and fyi the colder it is the better it works...you can buy it at the local...
2641
kelli peasley
santiamor2002
Jan 14, 2009 8:39 am
Hi I was just curious where in your childs feet are they bleeding? Are they pressure points from the AFOs or just skin breakdown? Maybe the AFOs are not...
2642
Dimitra Giannopoulou
gem25396
Feb 15, 2009 2:39 pm
Hello Everyone, Hope that you and your loved ones are doing well. I am looking for help on a special item. My daughter's swimming teacher has been asked to...
2643
Michelle
lamaking2000
Feb 23, 2009 2:59 pm
This is a question for those who are 50+ and older. I seem to be having problems with keeping my eyes focused due to lack of eye muscle. I have worn glassed...
2644
angela82462
Feb 24, 2009 12:57 am
Does anyone have recommendations on where to find shoes that fit over the HKAFO braces? Our dr. did not know. We have some New Balance tennis shoes but would...
2645
Donna Carleton
bdcarleton
Feb 24, 2009 5:12 am
keeping pace!! They are great! Donna From: angela82462 Sent: Monday, February 23, 2009 2:30 PM To: arthrogryposissupportgroup@yahoogroups.com Subject:...
2646
Wendy Antal
antal_1027
Feb 24, 2009 1:40 pm
Hatchbacks are my pick, my Daughter just got them for Christmas and they even come in Mary Janes so she doesn't have to wear tennis shoes to church! To:...
2647
ellebworthy01
Feb 24, 2009 1:41 pm
... I get a majority of my daughters shoes from stride rite, if that helps?!...
2648
Beverly R Hanset-Burch
beverlyhanse...
Feb 28, 2009 1:36 am
I started a Yahoo group for those with AMC and g-tubes and/or trachs as we have very unique issues and circumstances. It will be a closed, protected, moderated...
2649
zayra delgado
delsweet2003
Mar 7, 2009 3:37 am
Hi I have a boy who is 10 yrs old with arthrogryposis who is my pride and joy...I'm pregnant with my second child ,i was reading on line about arthrogryposis...
2650
angela82462
Mar 7, 2009 3:38 am
I am wondering what most of you do that have girls with braces in the summer time? We live in TN and it gets VERY hot here in the summer. I cannot imagine her...
2651
Emily Diehl
e_kay_d
Mar 7, 2009 4:16 am
Zayra, I have a 13 yr. mold girl with arthrogryposis and a 8 yr. old boy with out. Emily in Texas ... From: zayra delgado <delsweet2003@...> Subject:...
2652
Susie Baker
susiebake2001
Mar 7, 2009 6:07 am
Hi, I first had four children without AMC. Then I had my fifth baby and she had AMC. And after her I had a sixth baby without it. So she was the only one. ...
2653
Naomi Santiago
sosinphilly
Mar 7, 2009 5:52 pm
My daughter wears braces 20 hours out of the day. We keep her in skirts and dresses in the summertme with leggings underneath. They're thin and don't get too...
2654
Naomi Santiago
sosinphilly
Mar 7, 2009 5:56 pm
My first child has arthrogryposis and I am currently 5 months along with our second. So far things look good for her. Plenty of movement, not like my first....
2655
Allyson
allycat70001
Mar 7, 2009 7:58 pm
as far as i know unless it is the genetic form of amc it would be extremely rare to have more then one child born with amc. ever person i've meet with amc has...
2656
Tahlia
gntrboys
Mar 7, 2009 7:59 pm
I have 3 children my second son Tristin is the AMCer. My 3rd is a girl and born without AMC. We were worried also that she was going to have AMC too until she...
2657
Allyson
allycat70001
Mar 7, 2009 8:04 pm
I swear this is why i grew up hating braces. I live in new orleans where hot is a way of life, on top of that i was 100% tomboy and hated dresses. I wore argo...
2658
Beverly R Hanset-Burch
beverlyhanse...
Mar 7, 2009 8:19 pm
My three sons are 22, 21 and 18. My daughter is almost 5 and she is the one with AMC. ... From: Allyson To: arthrogryposissupportgroup@yahoogroups.com Sent:...
2659
Kelli Santana
pooh8angel
Mar 7, 2009 11:32 pm
I have two children from a previous marriage they are 14 and 9. They are both able bodied and healthy. My last child who is from my current marriage is 5 and...
