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Does anyone have a child with spina bifida? My son is 18 and I was wondering if there was anyone here that wanted to chat? ↓
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| Name: lindalu | Date: Aug 9th, 2006 10:31 PM |
| No my daughter doesnt have spina bifida, she has a spinal cord injury almost the same physical affects. I will be willing to chat if you would like. ↑ |
| Name: missleyden | Date: Aug 10th, 2006 8:01 AM |
Hi...My son is very independent just like it sounds like your daughter is. I have read about her in past posts. My son, Brad, just graduated from high school and is taking a year off to work at a lumber yard and will then go to a technical college to be an architect. He is ambulatory and uses forearm crutches to walk. He has AFO's. He has had many surgeries to deal with is SB.
I am having a problem with him right now with him just being a regular teenager. The same problems I'm sure every other parent has with their 18 year old. Which I suppose is a good thing....lol
I do have a strange question for you. How is it your daughter can feel things but then can't walk? My son is paralyzed from the knee down and has hardly any hip control and does not have bladder control. Just wondering, sorry. ↑ |
| Name: lindalu | Date: Aug 10th, 2006 10:27 AM |
| The rason for why she has feeling but cant walk has to do with the region of the injury and how severe the injury is. The C5 region is where her injury is, this controls the motor controle, as for feeling she is an incomplete meaning the spine is not totaly dammaged. ↑ |
| Name: missleyden | Date: Aug 10th, 2006 12:45 PM |
| That must be frustrating for her. Does she ever or used to feel sorry for herself? My son went thru that. ↑ |
| Name: lindalu | Date: Aug 10th, 2006 2:58 PM |
| No she didnt go through that stage, I guess Im luckey that she has'nt. When she was young she was verry popular with many friends, as they got to the dating stage they all kinda went their own way. She has had opertunaties to date but chose not to, she has goals and feels dating will get in the way. She wants no distractions! I have been fortunate that she is strong minded, she has never let her disabilities get in her way. Sure certaint activities have been hindered because of it but the real meaning full things haven't been affected. Your son must be eather foly cathetarized of use the condome type, There is nothing for females available, except for the foly cathetar. My daughter doesnt want use the foly cathetar because it will eventualy weaken the spinkter muscle and she would become dependant on it. Another reason Im sure your probably aware of, is the uti's. She wants to avoide them, So for now she has traind her bladder to only go in the morning and at night. ↑ |
| Name: missleyden | Date: Aug 10th, 2006 7:47 PM |
My son straight caths himself 4 times a day. He does get UTI's once in a while but they are no big deal to him any more. He just drinks more fluid and they go away.
My son has a ton of friends too but he has never had a girlfriend which upsets him a little. He is a lot more mature than girls his age so I think he needs to wait til he gets older to have one. ↑ |
| Name: lindalu | Date: Aug 10th, 2006 11:41 PM |
| I did notice the boys my daughter has met are not as mature as she. You are write it would probably be best if he waited untill he is older. All he will get now is hart ach. When he gets older and he is around an more mature crowd he will meet some one. Im sure it is hard for him to see his friends dating, thats a big part of growing up. Olthough he may be missing out on some things now, one day he will look back and realize it has made him a better man. ↑ |
| Name: mspeachpit | Date: Oct 12th, 2006 12:13 PM |
| hi. i am 26 and have spina bifida. what level is your son's lesion at? i am an L4 to S1. ↑ |
| Name: deedeesgang | Date: Nov 20th, 2006 1:35 PM |
| I have a 22 yr old son & 13 yr old daughter who both have SB. ↑ |
| Name: meggie24 | Date: Dec 10th, 2006 8:36 PM |
| I am 15 and I have spina bifida. How severe is your son ↑ |
| Name: kitten_77_99 | Date: Dec 23rd, 2006 4:04 PM |
| hi I have spinabifida and am a 29 year old female. if anyone here would like to talk to me about anything please feel free. :) kitten_77_99 is my yahoo id to be able to maybe catch me sooner. ↑ |
| Name: Dez | Date: Jul 4th, 2007 11:32 PM |
| Hello.. my name is Desiree, i am 17 years old and i have Spina Bifida.. if would be good to talk with some people who also have it.. my email/msn is desiree_hilton@hotmail.com.. thanks =o) ↑ |
| Name: Penny | Date: Jul 27th, 2007 4:20 PM |
| My 19 month old son has spina bifida ↑ |
| Name: lee | Date: Dec 11th, 2007 9:09 PM |
| Name: kimranjit | Date: Dec 23rd, 2007 8:50 PM |
| talk to me when you open your computer ↑ |
| Name: bean | Date: Jan 7th, 2008 1:17 AM |
| I am a 32 year old female and just found out I have well was born with it 32 years ago. I'd love the chance to talk to someone. ↑ |
| Name: Salan | Date: Jan 19th, 2008 4:43 PM |
Hi! I am 16 years old and I have spina bifida, I would love to chat if it is ok with u... I have waited my whole life to meet/talk to someone I could relate to, In so many ways, I would love to take this chance to share my feelings with someone just like me.
Thank you Sincerely ment ↑ |
| Name: ROZALIND | Date: Mar 30th, 2008 9:13 PM |
| HIYA EVERY1 I HAVE A 4YEAR OLD GIRL WI SPINA BIFFIDA AND MY PARTNER HAS A SPINAL CORD INJURY IF ANY1 WUD LIKE TO CHAT ↑ |
| Name: felicity | Date: Apr 17th, 2008 3:49 AM |
| can someone answer some questions, i have a 1 year old some with spina bifida l5 to s1, he is constipated alot, i want to know what opperations to expect for his future and some bowel and bladder managment ↑ |
| Name: Alisha | Date: Apr 23rd, 2008 7:32 PM |
| I'm 18 years old and I have spina bifida as well, and if we could talk that would be really great!!! my e-mail is purplelish89@yahoo.com ↑ |
| Name: Desiree | Date: Jun 24th, 2008 12:34 AM |
| Hi everyone.. i am a 18year old female with spina bifida.. it would be good to talk to other people who also have it so if your interested i have msn or you can just send me a email to desiree_hilton@hotmail.com =o) ↑ |
| Name: God'sBlessings | Date: Aug 28th, 2008 9:31 PM |
| my daughter unborn child has the same thing. i would love to chat with you. ↑ |
| Name: amandac | Date: Oct 31st, 2008 11:21 AM |
| hi my name is amanda im 23 i have two sons my youngest son is three and has spina bifida i love my sons both to pieces but sometimes its hard work my relationship with there dad broke down and i work hard to support my kids and i have a wonderful partner now who's completely dedicated to me and the children you might think what she complaining of ?? i've just found out im pregnant again and im delighted but i am also woried about this baby being born with spina bifida as it genetic on both sides i wouldnt change my son for the world but im still terrified. please has anyone any advice ↑ |
| Name: pierre | Date: Nov 7th, 2008 11:46 PM |
| hi i have spina bafida, hope to chat to people my email pierre786@iburst.co.za ↑ |
| Name: Elizabeth | Date: Dec 11th, 2008 5:53 PM |
| hi my name is Elizabeth and i am a 14 year old female and i have Spina Befida. I am parralyzed from my ankle down ↑ |
| Name: Elizabeth | Date: Dec 11th, 2008 5:55 PM |
| Can someone plz chat with me ↑ |
| Name: Elizabeth | Date: Dec 11th, 2008 5:56 PM |
| Oh one more question does anyone here catherize if so plz tell me ↑ |
| Name: Monica | Date: Dec 14th, 2008 3:15 AM |
| I am a Mother of a 20 month old boy who has Mylomeningocele Spina Bifida, located at L5/S1 who also uses a catheter every 3 hours to empty his bladder. He is not yet walking but crawls and scoots on his bottom very well. I am located in Eugene, Oregon and am looking to find other mother's of children with Spina Bifida. I am hoping to find someone that I can share my feelings and experiences with, and if possible set a meeting place for future play dates with a child near the same age and similar needs as my son. Thank you and I am hoping to connect with someone. :*) ↑ |
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