http://limbdifferences.org/connections/ An online resource for families and friends of children with limb differences. en Wed, 10 Mar 2010 05:38:46 +0000 http://limbdifferences.org/connections/topic.php?id=1075#post-5597 Sun, 07 Mar 2010 21:30:32 +0000 tpoeela 5597@http://limbdifferences.org/connections/ <p>i too was born with this. i am now a junior in high school and 16 years old.. i can pretty much understand how shes feelin... if u wanna talk to me my email is <a href="mailto:taylor_hsat@yahoo.com">taylor_hsat@yahoo.com</a> </p> http://limbdifferences.org/connections/topic.php?id=1197#post-5596 Sat, 06 Mar 2010 17:31:58 +0000 Meanders 5596@http://limbdifferences.org/connections/ <p>Hello,</p> <p>I know a lot of people on this message board have used Shriners Hospital. We just consulted with Dr. Kozin in Philadelphia, and we still just can't help but wonder, "What is the catch?" We talked about this with their staff, and we just couldn't believe the service they offer just for the sake of the children! </p> <p>Can those of you who chose to have your children operated at Shriners let me know if they felt like the technology was up to par? Also, did you consult with other doctors and how did you reach the decision to go with Shriners over the other hospitals? </p> <p>Thank you! </p> http://limbdifferences.org/connections/topic.php?id=1189#post-5595 Sat, 06 Mar 2010 08:02:04 +0000 sra 5595@http://limbdifferences.org/connections/ <p>Everything will be ok. Don't make any hurried decisions about surgery. I grew up very happily without any tampering with my short leg!<br /> I understand the worry, but really - we usually do quite well in life, especially since there usually is nothing wrong with the head! See my other posts from today. </p> http://limbdifferences.org/connections/topic.php?id=1136#post-5594 Sat, 06 Mar 2010 07:50:34 +0000 sra 5594@http://limbdifferences.org/connections/ <p>Hi Aussiegirl - I am 30, have a short femur and underdeveloped hip, but was never subjected to a surgery. I enjoy swimming especially, but also walking/hiking, with the help of a prosthesis of course. I used to be very active with horseback riding, that's another good thing to do without a prosthesis that gives a sense of accomplishment and improves balance and coordination. Don't know if that helps much? </p> http://limbdifferences.org/connections/topic.php?id=1083&page=2#post-5593 Sat, 06 Mar 2010 07:44:52 +0000 sra 5593@http://limbdifferences.org/connections/ <p>No need to be worried. </p> <p>I have lived happily for 30 years now with a 35 cm + difference in the legs, short femur and underdeveloped hip. I have no pain or other effects, and I have always done everything I wanted. For life reasons, I am now pursuing a nursing degree, and I hope it will go as well as my previous profession. I always finished first in my class in every school/university I went to. I was never teased or bullied. </p> <p>Just on a note - I never wanted a surgery of any of the types my parents researched very eagerly. Please do consider your child's wishes! We are not "incomplete"! </p> <p>The most important thing you can do for your child, is to let him/her know that he/she is loved, is complete, and has your full support. I know quite a few exceptional people like us - and not one who has not done well in life (all according to his/her own standards, of course). </p> <p>All the best to you all. </p> http://limbdifferences.org/connections/topic.php?id=1196#post-5592 Fri, 05 Mar 2010 15:21:50 +0000 thepierces 5592@http://limbdifferences.org/connections/ <p>Hello all,<br /> My wife and I recently had a precious baby boy (7 days ago) who has this condition. We are beginning our research for treatment. We have been advised to go to the Shriners Hospital here in Houston, TX but would also like to know if there is anything or any particular doctor that deals with this that some of you may recommend(anywhere in U.S. or world for that matter). Thank you!!! </p> http://limbdifferences.org/connections/topic.php?id=567#post-5591 Mon, 01 Mar 2010 18:50:26 +0000 waynem10 5591@http://limbdifferences.org/connections/ <p>We have really been trying to locate someone with a situation similar to our Addi's: We had twins on October 7, 2009. One twin has no deficiencies (Alexis) and the second has bilateral ulna dysplasia (Addison). Her arms are not severely bowed, she has no elbows, and has 2 fused fingers on each hand. I would love to talk to you since you have experienced something similar to our situation. We would like to hear about surgeries that you have had done and drs. you have seen. Thank you in advance.</p> <p>Wayne and Missy Schneider </p> http://limbdifferences.org/connections/topic.php?id=703#post-5590 Mon, 01 Mar 2010 17:47:17 +0000 waynem10 5590@http://limbdifferences.org/connections/ <p>We had twins on October 7, 2009. One twin has no difficiences(Alexis) and the second has bilateral ulna dysplasia (Addison). Her arms are not severely bowed, she has no elbows, and has 2 fused fingers on each hand. I would love to talk to any of you who have experienced something similar to our situation. We would like to hear about surgeries and drs. that you have had done. Problems and solutions would also be welcomed. Thank you in advance.</p> <p>Wayne and Missy Schneider </p> http://limbdifferences.org/connections/topic.php?id=1195#post-5589 Mon, 01 Mar 2010 13:52:58 +0000 MrHsMom 5589@http://limbdifferences.org/connections/ <p>Hi everyone,<br /> I was wondering if there is anyone in the Portland, OR area who has a child with a hand difference. My 17 month old son has Symbrachydactyly of the left hand and I thought it would be wonderful for him to know someone else with the same or similar condition. Please let me know if you're interested!</p> <p>thank you,<br /> Jamie </p> http://limbdifferences.org/connections/topic.php?id=457#post-5588 Sun, 28 Feb 2010 00:02:44 +0000 waynem10 5588@http://limbdifferences.org/connections/ <p>We had twins on October 7, 2009. One twin has no diffiencies (Alexis) and the second has bilateral ulna dysplasia (Addison). Her arms are not severely bowed, she has no elbows, and has 2 fused fingers on each hand. I would love to talk to any of you who have experienced something similar to our situation. We would like to hear about surgeries and drs. that you have had done. Problems and solutions would also be welcomed. Thank you in advance.</p> <p>Wayne and Missy Schneider </p> http://limbdifferences.org/connections/topic.php?id=1055&page=2#post-5587 Fri, 26 Feb 2010 11:59:13 +0000 Kim37 5587@http://limbdifferences.org/connections/ <p>Hi Everyone,<br /> I am doing research on-line to figure out how best to assist my 6 years old son. He has bilateral radial ulnar synostosis. When he was younger, he received some OT help through early intervention. He was able to compensate and performed age appropriate tasks so he no longer qualify for OT service through the school.However, now that is in 1st grade, he found some tasks more challenging. For example, it takes him longer to write and do school related tasks than children of his age group. Since he does not understand that he has a condition that prevents him from doing certain activities, he is begining to perhaps developing self-esteem issues. He compares himself with others and feel really sad about his performance. He has many bad days in school. Is anyone facing the same challenge as is relates to school and what are you doing to address the issues??? </p> http://limbdifferences.org/connections/topic.php?id=1184#post-5586 Wed, 24 Feb 2010 16:40:34 +0000 Dr. Wint 5586@http://limbdifferences.org/connections/ <p>Twobtrue,</p> <p>You should try to see a hand surgeon. Preferably one who takes care of both congenital hand differnces such as your syndactlyl and who also has a significant adult "arthritic" clientele. Many hand surgeons do take car of both of htese groups. The American Society for Surgery of the Hand has a find a doctor feature on their web site at <a href="http://www.assh.org" rel="nofollow">www.assh.org</a> to help you find a hand surgeon in your area.</p> <p>Whether you have arthritis or perhaps just "trigger finger" or a combination of the two is difficult to ascertain from text but many adults have tendintitis that causes locking or popping and confuse it with arthritis. Furthermore a smaller less mobile hand that had a congenital difference is at times prone to more pressure in a focal area due to the decreased surface area avaialble for tasks. </p> http://limbdifferences.org/connections/topic.php?id=1075#post-5585 Mon, 15 Feb 2010 13:47:25 +0000 nicolepauline 5585@http://limbdifferences.org/connections/ <p>Hi. I was surfing the web and ended up finding this. My name is Nicole and i was also born with Radial Club hand, im 16 years old and a junior in high school i have been through many surgery's and i would love to meet somebody else with the same thing as me! Hope everything is well!</p> <p>-Nicole. </p> http://limbdifferences.org/connections/topic.php?id=1055&page=2#post-5584 Sat, 13 Feb 2010 19:01:31 +0000 Martha 5584@http://limbdifferences.org/connections/ <p>Hi, what an incredible site, things are making so much sense. My husband (47) has rus in both arms and is unable to rotate at all. My son (second born out of 3 children) who is 11 has a "bendy" left arm, we found it when he was 15 months and he was unable to turn his hand over to wash it under the tap. He is lucky that it isn't in both so he is able to cope with his own personal hygiene etc but he does find it annoying at times. He is very determined and although he has found there are a number of things he is unable to do ie play the violin, guitar etc although he has managed to find his own way around alot of things for example he holds a cricket bat in a very odd position but it works for him. We have decided that surgery would be a bad idea as it is likely to make matters worse. We have a fab physio who has said she will see him every 6 months 'til he is 16 and gives him exercises to encourage the muscles to work as they are in funny places too. It was very interesting to read about sore shoulders and backache as my husband has recently experienced both of these and hadnt thought it might be due to his arms. I am very comforted that there are others out there - hadnt really thought to look it up on the computer - we were just told they were rare! </p> http://limbdifferences.org/connections/topic.php?id=1188#post-5583 Fri, 12 Feb 2010 15:01:06 +0000 herb9746 5583@http://limbdifferences.org/connections/ <p>Hi my son was born with hypoplastic right thumb. he just had the pollicization surgery to correct it and we just had the pin out almost 2 weeks ago. he had no tendons, no ligaments and was also missing the metacarple bone for the thumb. his new thumb looks great and you would never know it used to be his index finger. he is going through pt/ot now to learn how to use it. </p> http://limbdifferences.org/connections/topic.php?id=1194#post-5582 Thu, 11 Feb 2010 08:10:13 +0000 sara 5582@http://limbdifferences.org/connections/ <p>Anyone have limb anomolies due to VACTERLs syndrome? </p> http://limbdifferences.org/connections/topic.php?id=1188#post-5581 Wed, 10 Feb 2010 15:27:33 +0000 alicia 5581@http://limbdifferences.org/connections/ <p>I have the floating thumb. No muscles, no fonction, my thumb is 'just' hanging there or chilling a little bit. </p> http://limbdifferences.org/connections/topic.php?id=1055&page=2#post-5580 Wed, 10 Feb 2010 13:37:37 +0000 Travis 5580@http://limbdifferences.org/connections/ <p>Hello Liz<br /> Seems I found another group.<br /> I live in Ohio and my son and I have been all over this part of the States looking for help. He is 7 and has it Bilateral. Im hopefully jetting off to California to speak with other orthapedic surgeons. If it was me afflicted I would go have a surgery done tomorrow if for nothing else that to have the world gain knoeledge as to what does or doesnt work. It being my son I'm not gambeling until all the info has been processed. I have been in contact with alot of surgeons as well as all of you have. Im looking as I said in California as well as Asia now. Making the surgical community aware of this is the only way studies and future treatments will come to be. I have spoke with many doctors that have never heard of it before. Im currently sending out xrays and cd's to doctors hoping that they may share the info with other colleagues and talk amongs themselves hopefully to find an answer. God bless you all and we'll keep tryin on this end. </p> http://limbdifferences.org/connections/topic.php?id=1193#post-5579 Tue, 09 Feb 2010 20:42:34 +0000 CathyDonovan 5579@http://limbdifferences.org/connections/ <p>I grew up in Fl, but live in Mn now. My son is 9, has no left arm and is in 3rd grade. I'm assuming your son attends a larger school, because my son's classmates got over him by the end of the first week of kindergarten. I did (in kindergarten) send a note to his teacher telling her that he wasn't to be bugged or stared at when he did't want the attention. In our school that is treated as bullying. At 7 these kids are old enough to learn this is inappropriate and you need to hold the teachers and recess moniters responsible. I'd start with talking to his teacher about it and if that doesn't help talk to the administration. Cathy </p> http://limbdifferences.org/connections/topic.php?id=1188#post-5578 Tue, 09 Feb 2010 15:57:40 +0000 sara 5578@http://limbdifferences.org/connections/ <p>Alicia:</p> <p>Thanks for the info. Sorry for all of the questions, but I am trying to understand all of this. Can you move your thumb? It seems that my daughter cannot move her actual thumb but does have muscle and movement at the base of the thumb. </p> http://limbdifferences.org/connections/topic.php?id=1193#post-5577 Mon, 08 Feb 2010 23:32:08 +0000 gldcrs01 5577@http://limbdifferences.org/connections/ <p>Hello,<br /> I have a seven year old son who was born with a left hand anomaly. He has two fingers and a thumb. They were webbed together at birth and were separated at 15 months. He seems to have a difficult time in school. Other children are curious and he is kinda of tired of explaining himself. I was hoping that maybe there are social events or gathers for children with limb differences in Miami, Florida or South Florida in general. I would greatly appreciate any input. Thanks Gladys </p> http://limbdifferences.org/connections/topic.php?id=1060#post-5576 Mon, 08 Feb 2010 19:54:59 +0000 beanie 5576@http://limbdifferences.org/connections/ <p>Hi Paridhi, </p> <p>My son was also born with symbrachydactyly of the left hand. In his case, both orthopedists and plastic surgeons have recommended against surgery, and he functions very well with what he has. As far as prosthetics go, we have always been told that most children with this type of hand function much better without them. Our orthopedist told us of a study at Shriner's of children who wore prosthetics which found that most of them had higher function without one than wearing one. Rest assured that your child will very quickly learn how to work with his own particular hand and fingers and will amaze you with his abilities. </p> <p>Bridget </p> http://limbdifferences.org/connections/topic.php?id=1130#post-5575 Mon, 08 Feb 2010 19:46:33 +0000 beanie 5575@http://limbdifferences.org/connections/ <p>Amen to that last part, Karen. We have a little friend who was born with a brain tumor and has undergone three surgeries by age 2 1/2. I feel like what is a little hand compared to that? We are truly so fortunate. </p> http://limbdifferences.org/connections/topic.php?id=1188#post-5574 Mon, 08 Feb 2010 16:56:19 +0000 alicia 5574@http://limbdifferences.org/connections/ <p>I feel like I have 99% of fonction on my right hand (with the little thumb ;-) and even think I'm right handed. I use my left hand to write and use scissors, but use my right to cut with a knife, take a cup,... I can write also with my right hand, but not that fast. The 1% I'm missing is not being able to tell somebody 'two thumbs up' and I'm not a very good hitchhiker ;-).<br /> No matter what you choose for your daughter, without even realizing it, she will adapt. I cannot remember that I really had to think a lot before I figured out how to manipulate something, for me it all went really fluently. I hope this helps. </p> http://limbdifferences.org/connections/topic.php?id=651#post-5573 Mon, 08 Feb 2010 11:41:56 +0000 nicholasmom 5573@http://limbdifferences.org/connections/ <p>that's ok! thanks for letting me know </p> http://limbdifferences.org/connections/topic.php?id=1060#post-5572 Sat, 06 Feb 2010 20:25:43 +0000 OTmom 5572@http://limbdifferences.org/connections/ <p>Hi Paridhi,<br /> I want to start by thanking everyone for all the wonderful information they provide here. Especially the mothers of older children who share their support and helps us to understand the importance of making our children feel positive and confident about who they are. Everyone is different in some way or some how.<br /> My son David who is now almost 1 1/2 years old was born with left hand symbrachydactyly. Meaning, his left hand is about 30-40% smaller than his right and his index, middle and ring fingers were webbed and significantly smaller than normal. His index finger is the most affected. This finger is the smallest, but both his middle and index finger have limited finger joint movement. The nail on the index finger is also abnormal (hard and shaped like a "V"). Davids thumb appears normal.<br /> The irony of this story is that my son was born to a mother who spends her day as a pediatric occupational therapist, specializing children with hand dysfunction. I don't win the lottery but we did become part of the 1 in 40,000 family odds of being born with this congenital abnormality, go figure. Being an OT who sees children with various disabilities on a daily basis did not make my journey in this world any easier, if anything it made it that much harder. I'm happy to say that after about 4-5 months I found a way to stop mourning the fact that my son was a little difference and just love him for the amazing, sweet and charming little man that he is.<br /> At three months we went to a hand surgeon I trusted and developed a short term plan to address the webbing, web space deeping and possible surgery to correct the curvature in his pink. It was scarey, but shortly after his first birthday, David had his first 4 hour hand surgery to remove the webbing and deepen the space between each finger alittle bit to increase his finger function. Now, do I think the surgery was worth it for David Yes, very much so. Since the surgery, I've notice a huge difference in his ability to use left hand while playing with small manipulatives, put coins in a bank or while picking up small cheerios. At 3-5 years old he will have pins put in his pink to minimize the curvature of the bones in that finger. None of these surgerys will change the appearance, just his function and future comfort.<br /> Everyday I remind myself that children find ways to adapt to anything. It's all they know, and for them, thats what normal is. He's my advice as an OT: keep in mind that in life -- the majority of the time you are using your non dominant hand as an assist. Meaning, a way to hold something while your dominant hand does the manipulating (ie. hold paper while writing, hold a container while opening). Life skills like shoe tying, typing and buttoning can all be adapted to make life a little easier if need be. Not every child will benefit from surgery. Perhaps you can try to seek out various opinion on what your options are. God Bless all of you and thank you all for sharing your stories. I can not express how much it has helped me over the past 18 months!</p> <p>Nancy </p> http://limbdifferences.org/connections/topic.php?id=1170#post-5571 Fri, 05 Feb 2010 21:42:38 +0000 harleyb 5571@http://limbdifferences.org/connections/ <p>I would suggest there is little difference if the surgeon is good. </p> http://limbdifferences.org/connections/topic.php?id=1179#post-5570 Fri, 05 Feb 2010 21:41:10 +0000 harleyb 5570@http://limbdifferences.org/connections/ <p>Not really sure. I guess you will know more once the adoption goes through. </p> http://limbdifferences.org/connections/topic.php?id=1173#post-5569 Fri, 05 Feb 2010 21:39:35 +0000 harleyb 5569@http://limbdifferences.org/connections/ <p>Sara,</p> <p>There are a number of procedures that may be indicated for your daughter. In general - none would be performed before 6 months of age - and so you have plenty of time to arrange a consultation with a hand surgeon. I do not personally know a pediatric hand surgeon in your area.</p> <p>Hope this helps. </p> http://limbdifferences.org/connections/topic.php?id=1188#post-5568 Fri, 05 Feb 2010 21:14:30 +0000 sara 5568@http://limbdifferences.org/connections/ <p>My daughter was born in October 2009 and has a hypoplastic right thumb. They aren't sure yet if she has muscle/tendons, etc. It doesnt seem to move at all. Has it affected the use of your hand? Can you still grab, write, etc. Just curious of what I should expect.<br /> Thanks </p> http://limbdifferences.org/connections/topic.php?id=1130#post-5567 Fri, 05 Feb 2010 16:49:37 +0000 KarenO 5567@http://limbdifferences.org/connections/ <p>I'm not sure there is much research in this area--congenital limb differences. And if there is it might not be very accessible to the general public. Are you looking for research on causal links to limb differences?</p> <p>As for his clothing, modifying it some might be helpful for him. And if you aren't good at sewing (I'm terrible) I'm sure you could find someone willing to help. The questions and stares are just something you might or might not get used to. I always took it as a way to educate people (although she has this difference, she can still get on quite well) and show my daughter that she needn't be embarrassed when someone comments on her hand. And I always remember that there are so many worse things that could happen to my child that a limb difference is minor compared to illness.</p> <p>Karen </p> http://limbdifferences.org/connections/topic.php?id=651#post-5566 Fri, 05 Feb 2010 16:27:49 +0000 KarenO 5566@http://limbdifferences.org/connections/ <p>Sorry, someone took my extras a year or so ago. </p> http://limbdifferences.org/connections/topic.php?id=3#post-5565 Wed, 03 Feb 2010 03:39:45 +0000 brianmitchell 5565@http://limbdifferences.org/connections/ <p>left hip socket may not be fully formed </p> http://limbdifferences.org/connections/topic.php?id=1130#post-5564 Tue, 02 Feb 2010 00:20:03 +0000 blueberry 5564@http://limbdifferences.org/connections/ <p>He will be okay, Sarah. Okay doesn't mean able do do everything you want. Okay is when you're loved and cared for and accepted just the way you are. Okay is when you look at your mom and she tells you that you are the best thing that's ever happened to her. When you're supported, encouraged, and challenged. Okay is when you're given the opportunity to have faith and you accept it. </p> <p>I think you're both going to be okay. </p> http://limbdifferences.org/connections/topic.php?id=1192#post-5563 Mon, 01 Feb 2010 09:16:10 +0000 Katie M 5563@http://limbdifferences.org/connections/ <p>My son, Tony, is 24 now. He was born in 1985 missing his left forearm and hand (he has about one inch below his left elbow). I've posted here before, and many of you know he's a singer/songwriter performer who plays guitar (yes, with one hand!) But what is of interest to me this week is that he and his wife (Lesleigh) decided to go on our church's mission trip to New Orleans for Hurricane Katrina relief. Yes, 4 years after the hurricane, there is still a lot to do. So even though "working with his hand" was never his "gift" he decided to go anyway and be of help to others. I believe he's on the "painting team" this week. Anyway, he loves to journal so you can follow his blog if you're interested. <a href="http://www.tonymemmel.com" rel="nofollow">www.tonymemmel.com</a> and look in the left column for "Blog of an Underdog" I'm anxious to hear how it all goes. And most importantly, I think it's important for anyone who is reading this, who's baby is little yet, anyone who's questioning if everything will be ok, that the answer is a resounding YES, life can be wonderful and meaningful. </p>