Hi, This is my first post. We have been told our daughter will be born with spina bifida. We have done some research but still would like all the info we can...
We have been given the name of a couple neurosurgeons to consult with in case our daughter requires surgery immidiatly after birth to correct the lesion from...
I'm realizing my daughter will be here in in about 8-10 weeks. Are there any special considerations for choosing a General Pediatrician when your child has SB...
It sounds like your on a relatively even emotional keel and ready to do the research and prep. That's great! Fortunately, we had two fantastic ob's to help us...
Hi there. We have a 5-year-old daughter with spina bifida, L3-4. I hope our experience is not the norm, but I thought I would share our experience. We had a...
I know, strange combo...:) Just had a couple of questions. I have read through many of the posts on bowel movements and was just wondering at what age those...
Hi, My daughter is 13, L-4. We had always tried everything to find some rhyme or reason to her bowel patterns, and there were NONE! Finally, this past year,...
Our advice is to find someone who has some general experience with spina bifida and is willing to work with your daughter's team. It is important that your...
Thought I'd offer a comparison account: Riley is eight years old, L5-S1. For the past couple years she's usually been able to tell when she needs to move her...
By 8 years old she should definitely be cathing herself. based on her age, there's no reason the nurse should be doing it. it is my experience that having...
you're not sure what the hurry is? it's not a matter of who helps your daughter when she has problems, that's a very selfish line of thinking- it's about your...
I'm not sure that I agree with this post. All children with spina bifida are so different that you can not possibly base how other people should be based on...
Forgive me, but you sound so angry...gosh.... ... your daughter when she has problems, that's a very selfish line of thinking- it's about your daughter gaining...
not angry, just stressing the importance of independence. i have friends who's parents didn't expect them to do certain things as early as they could have so...
Of course I want the best for Bekah! We all do for all of our children, with special needs or not. I agree it is unrealistic to "suddenly" want your kids to...
This is a place where we can all turn for advice and help as we raise our children with spina bifida. Let's all remember that every child with spina bifida is...
Hey, my daughter will be 5 the end of July, she is L4L5... and uses Miralax...this works pretty well with her now that we have the correct dose again...she can...
I believe any Pediatrician should have a general knowledge of children with SB...our children have so many specialist anyway its nice to just have a regular Dr...
I dont suppose this is a general post, but I am just glad to find another Spina Bifida child with sensory Processing problems...what problems do you have with...
My daughter is almost 5 and would love to cath herself, but literaay cant we cant figure out how to get the mirror positioned correctly and the gloves dont fit...
ok. that makes sense. it would have been nice to have info about her specific medical challenges in your 1st post. i'm thrilled to hear that she wants to! so...
i also have sensory issues, but that's limited to loud sudden noises. i have panic attacks when i know i'm going to be around loud sudden noises such as...
Hey, we found out 11 days before my daughter was born that she had SB...We didnt have time to do the research you are doing...This should make it a little...
i am 43 and was born with sb and no rectum. they had to make a hole and used intestines to attach to it. suppositories never worked because they require you to...
Riley has more auditory and sequential issue than other...loud noises scare and shock; giving any directions, esp. verbal consisting of two or more sequential...
Riley just doesn't have the fine motor just yet to cath, I really think it is a combination of that and the processing- I think there is great apprehension for...
Just speaking from my own experience, you will be lucky if you can find a special needs pediatrician. Dillan goes to a regular local doctor for his general...
well at least she's reading! most 5 yr olds, with SB or not, don't have a passion for reading. you said the balance issue is recent... that makes me think...
This is very interesting to me. When Bekah was little (around a year old) she would freak out at any loud noise. I could not get an answer from any of her...
Sara and others Ah! the joys of sudden and loud noises! ;-) It's something that most people with SB, no matter what age they are, will have to deal with from...
