I have been diagnosed with a syndrome that affects my salt levels. As a result they are limiting fluid intake to 2000 cc. I have always told been that a...
I was born with myelomeningocele spina bifida. I have a huge red birthmark on my left leg, a really nasty scar on my back and this weird looking scar on the...
Hello everyone, My 9 y/o son with sb was diagnosed with syringomelia 3 years ago and has had 3 chiari decompressions and placement of a syringo-pleural shunt....
Hi my name is Rozalind and I have a 5 month old baby Holli with sb & hydro she is cath every 3hrs but the doctor has mentioned the one her stomach can you...
Hi my name is Rozalind I have a 5 month old daughter Holli with sb and hydro and bladder retention and has to be cath every 3 hours. I'm just looking for some...
I will try to address some of your concerns.... My daughter kicked her legs like crazy as an infant. One foot turned in a lot, and her left leg and foot were...
My son also was able to kick his legs alot when he was young. He is now 9 y/o and walks without any canes or crutches, he only wears AFO's (leg braces). He...
Hi everyone, I'm new here but my doctor thinks I may have Spina bifida occulta. I'm experiencing pain and numbness in my legs and some pain in my lower back....
I'm new here and I'm a bit disappointed thay no one has taken the time to look or reply to my message. I thought people on here would have understood my upset...
Hi. Welcome to the group. I am very sorry about the pain you have been experiencing. Please keep us posted as to what the doctor says when you see him. ...
In addition, I just noticed that all of your posts were made extremely early this morning in Eastern time, where I am, here in New York (from 5:48 am to 7:54...
Thought that subject line might get me an answer. Hee hee I was born with myelomeningocele spina bifida. I have a huge red birthmark on my left leg, a really...
Hi Faith, My name is Rozalind I'm 21 and have a girl called Holli with SB,Hydro & bladder retention and has to be catheterized every 3hrs which I find very...
I didn't think of the time difference!!! lol Thanks for your help anyway, I will keep you posted for anything new. I'm just awaiting my referals now, I hope...
... I'm 20 and I've just been diagnosed with spina bifida occulta. I know how frustrated you must have been as I've been going to the doctors for the last 17...
I just wanted to say Happy Mothers Day to all of you mothers of SB kids out there. We deserve a day!!! Hope you got a little break today from your daily...
Hi all, I am looking for all your help and involvement on this topic. I am in school and selected spina bifida as a research topic . I would like to know...
Hiya everyone, How are you today? I'm having a bad day already! I think I overdid things yesterday, I played football with my Daughter, I went shopping which...
Sounds like you keep yourself really busy , you will need the day of and rest you don't want to wear yourself out to much , you need to take care of...
First though I'm sure you had was that I'm pregnant. Allow me to assure you I'm not. For the past 6, almost 7, years I have been sick every morning from about...
My daughter went through about a year and a half with daily nausea and headaches, and occasional vomiting. We ruled out shunt, tethered cord, Arnold Chiari,...
Hi everyone, I need your advice, I fell yesterday and was taken to Casualty, then when they sent me home, the pain was getting worse so I went back and sat in...
Hi my name is Marie. I have a seven-year-old son called Tommy with Spina Bifida. He is catheterized every two hours.I have to give him an enema daily, he has a...
You shouldn't have to manually evacuate his bowels after an emena. Do you use warm water high volumn enemas? He should get 10cc's of water for every pound he...
My daugther (5) is not a big fruit and veggie eater either. :( BUT its amazing how you can HIDE these in other foods. Shredded carrots in speggetti sauce,...
