http://spinabifidaconnection.com Spina Bifida support forum for adults with spina bifida and parents of children with spina bifida. en Fri, 18 May 2012 10:20:23 GMT vBulletin 60 http://spinabifidaconnection.com/images/styles/spina/misc/rss.jpg http://spinabifidaconnection.com http://spinabifidaconnection.com/showthread.php?t=4805&goto=newpost Fri, 18 May 2012 05:32:58 GMT Sarah is 4 and has for almost a year now noticeable weakness that comes and goes in her left leg. She runs/walks very well still, just more clumsy.... Sarah is 4 and has for almost a year now noticeable weakness that comes and goes in her left leg. She runs/walks very well still, just more clumsy. It is turning inward and it used to be her stronger leg. :( She saw the neurosurgeon last week, we're waiting for an MRI to be scheduled, it can take a month to get in. The worry I have is that this will cause her to lose more function than she has lost already. It sounds like a long recovery, and I cannot lift her d/t my own neck problems. I'm also worried that she may not recover her strength as it has been a year, but it does seem as though is was stable on and off. The neuro says they monitor the nerves during the surgery so as not to damage them, but I'm not convinced at this moment. I've heard of some people that became worse after surgery, not better. :2aa: :kleenex: ]]> General Spina Bifida Talk bcain http://spinabifidaconnection.com/showthread.php?t=4805 http://spinabifidaconnection.com/showthread.php?t=4803&goto=newpost Wed, 16 May 2012 22:24:12 GMT I took Luke for.a chromosome study a few months ago I know its about his hypotonia n genetics I got a call that they want me to talk to a specialist... I took Luke for.a chromosome study a few months ago I know its about his hypotonia n genetics I got a call that they want me to talk to a specialist has this happened to anyone I am so scared about what I'm going.to.b told. Help!!! ]]> General Spina Bifida Talk Jen http://spinabifidaconnection.com/showthread.php?t=4803 http://spinabifidaconnection.com/showthread.php?t=4802&goto=newpost Wed, 16 May 2012 16:53:59 GMT My son is almost 15 months old, he is a twin. He has been delayed with anything regarding bearing weight on his legs, and didn't pull up until 13 months old and has just began to cruise. His physical therapist has questioned his sensation in his feet because of how he uses his feet and because he will scrape them up crawling on concrete and not cry (bit cries if he nurses his hands, arms, head, etc)

He has a sacral dimple (but you can see the bottom of it) and his butt crack is crooked at the top. The dimple is also very far away from his "hole", so it is a high dimple.

He also has hydronephrosis and has since he was in utero. But his VCUG was normal.

One of our pediatricians says an MRI is unnecessary because you can see the bottom of the dimple. The other wanted one ASAP.

Do you think the risk of a sedated MRI is warranted in this case? My husband is leery because DS has learned how to cruise. He thinks the whole thing is silly. ]]> Recently Diagnosed iheartamerica http://spinabifidaconnection.com/showthread.php?t=4802 http://spinabifidaconnection.com/showthread.php?t=4801&goto=newpost Wed, 16 May 2012 14:31:53 GMT My daughter Ema recieved prenatal surgery and at 6 months has not needed a shunt. However she has had a abnormal head growth (1.5 cm in 10 days) and... My daughter Ema recieved prenatal surgery and at 6 months has not needed a shunt. However she has had a abnormal head growth (1.5 cm in 10 days) and her neurologist considers she has sunset eyes. We did a CT Scan but the neurosurgen didnīt see any considerable growth in ventricle size and says there is plenty of liquid around the brain. Iīm just worried that, if she needs a shunt and doesnīt get it on time, she will sufer congitive consecuenses. Has anyone been in a similar situation? Which are the most relevant thing to look for before placing a shunt??

Thanks!! ]]> Hydrocephalus newmom http://spinabifidaconnection.com/showthread.php?t=4801 http://spinabifidaconnection.com/showthread.php?t=4800&goto=newpost Wed, 16 May 2012 11:24:09 GMT Over the last 3 or 4 days my right hip which is dislocated has become very sore. Today as I was getting out of my car the left hip cracked and is now... Over the last 3 or 4 days my right hip which is dislocated has become very sore. Today as I was getting out of my car the left hip cracked and is now very sore. Does anyone else suffer from sore hips and could give me any insight as to what this could be? Thanks in advance. ]]> General Spina Bifida Talk lauren_24 http://spinabifidaconnection.com/showthread.php?t=4800 http://spinabifidaconnection.com/showthread.php?t=4798&goto=newpost Wed, 16 May 2012 01:09:05 GMT My daughter is 19 months old and we are trying to get her to walk with a walker. I need some advised because she does not want to do it will throw... My daughter is 19 months old and we are trying to get her to walk with a walker. I need some advised because she does not want to do it will throw fits. She has AFOs to help. ]]> Recently Diagnosed lynn10 http://spinabifidaconnection.com/showthread.php?t=4798 http://spinabifidaconnection.com/showthread.php?t=4797&goto=newpost Wed, 16 May 2012 00:51:48 GMT Tomorrow my wife and I will be going to the doctor to discuss a date to have a c-section. My wife is very nervous about it because she wants to be... Tomorrow my wife and I will be going to the doctor to discuss a date to have a c-section. My wife is very nervous about it because she wants to be with the baby when she is born. She hasn't really discussed this with the doctor because she didn't want him to be annoyed with her since we had to see him so much. She has threw in a few comments about whether it is necessary to have a c-section but he keeps saying its very likely that she will have to have one. We also talked to the neurosurgeon and all he had to say was that child birth was not his field so he really didnt know either way. Our daughters lesion is at l5 s3, and her ventricles were at 15 last month when we visited (30 weeks) and the doctor assures us it is very small. She just wants to know how she can go about telling the doctor that she doesnt want a c-section and what to say if he refuses. From what we understand its really not her choice so we want to be as convincing as possible but we can't find any solid research that a doctor would really care about. We just read on here that a natural birth is just as safe so she really doesnt want an unnecessary c-section. Thank you all very much, this site has helped us so much! ]]> Recently Diagnosed jrterrba http://spinabifidaconnection.com/showthread.php?t=4797 http://spinabifidaconnection.com/showthread.php?t=4796&goto=newpost Tue, 15 May 2012 18:25:37 GMT Hi there. We found out at our 20 week scan that our baby has spina bifida and hydrocephalus. We were originally told the legion was at L1,, open... Hi there. We found out at our 20 week scan that our baby has spina bifida and hydrocephalus. We were originally told the legion was at L1,, open and exposed and the hydrocephalus was quite severe. We had went back today (now week 24) for another scan and got the news that the legion is higher, about T10 and ends higher and told the overall prognosis for the baby is much worse and that IF she survived birth would have a lot more complications than first anticipated. The hospital are setting up an appoinment for an MRI but said it will only be 10% more accurate and won't be able to tell us much more. We were offered a termination at the 20 week scan and refused, we were given the same option today and refused again. There are so many amazing people on this site with so many positive stories but we aren't sure whether we are wrong to anticipate anything other than bad news? Or what sort of quality of life we should expect for our baby? ]]> Recently Diagnosed shellycz http://spinabifidaconnection.com/showthread.php?t=4796 http://spinabifidaconnection.com/showthread.php?t=4795&goto=newpost Tue, 15 May 2012 15:57:12 GMT I am 38 years old, live in Europe, am 18 weeks pregnant with a little boy (third child) and we found out today that the child will be born with... I am 38 years old, live in Europe, am 18 weeks pregnant with a little boy (third child) and we found out today that the child will be born with spina bifida.

So far we know that:
it is in the sacral region
it is closed with a cele
so far, the legs look and move normal.
ventricles are enlarged, but no more than expected. I have been warned that this may change and development of hydrocephalus must be closely monitored.
So far i understand all hopeful signs.

C-section should be planned at around 38 weeks. Immediate surgery will follow.

I am doing my best to stay calm and just gather information now. Don't know whether I will freak out at some point.

i am very glad I found this place. ]]> New Member Help Center - Introduce Yourself Tigerle http://spinabifidaconnection.com/showthread.php?t=4795 http://spinabifidaconnection.com/showthread.php?t=4794&goto=newpost Mon, 14 May 2012 19:45:13 GMT Okay, I need some ideas while I wait to hear from the doctors here. Warning, the poop talk is a bit gross. My son Mason is beginning to get... Okay, I need some ideas while I wait to hear from the doctors here. Warning, the poop talk is a bit gross.

My son Mason is beginning to get constipated. He's 4 months old and an L2 Myelo. He's got use of his hips but nothing below that, neurogenic bladder and bowel. He's not pushing the poop out. When he cries it comes out partway (while he's straining) but as he relaxes the poop just goes back in. If we're quick we can use a wipe to grab the poop and pull it out usually. His poops have just started getting solid in the last two weeks, and now they're too solid so this is what we're having to do. Sigh. I knew this was likely to happen.

So now what do I do? He's formula only (no food yet). I've put a call in to the Myelo clinic but haven't heard back from them yet.

Thank you for ideas and experience in this, I've not had a baby with constipation issues before, even though Mason's my 7th. There is always something new to learn! ]]> General Spina Bifida Talk Tristan http://spinabifidaconnection.com/showthread.php?t=4794 http://spinabifidaconnection.com/showthread.php?t=4793&goto=newpost Mon, 14 May 2012 16:02:38 GMT So I entered K into a photo contest, if we get the most likes between now and May 19 we win a photo shoot and we've not had pics since before she was born, so I would love to win! Can you help a girl out?? :)

I just need you to like this photographer: http://www.facebook.com/LFordPhotography

and then go to Kaitlyn's picture and like the picture:
http://www.facebook.com/photo.php?fb...type=1&theater

Please and thank you! Once the contest is over you can unlike her page, just need the votes until May 20! ]]> Off Topic Chat RocketCityMama http://spinabifidaconnection.com/showthread.php?t=4793 http://spinabifidaconnection.com/showthread.php?t=4792&goto=newpost Mon, 14 May 2012 11:09:23 GMT in hospital again. 3rd time in less than 3 months. You know you are a frequent flyer when nurses know all the info about you without looking at the... in hospital again. 3rd time in less than 3 months. You know you are a frequent flyer when nurses know all the info about you without looking at the notes. ]]> General Spina Bifida Talk hotwheels http://spinabifidaconnection.com/showthread.php?t=4792 http://spinabifidaconnection.com/showthread.php?t=4791&goto=newpost Mon, 14 May 2012 06:55:21 GMT Hello,

I feel like I could very easily write a novel for my first post, but I will try to avoid this. I'm a 26-year old male who was born with SB (Myelomeningocele). I am actually unsure of which vertebrae it is on, but it's definitely low. It has mainly affected my bladder/bowel functions, but I'm sure it has also had some effect on my clumsiness and my organizational ability. I only just today became aware of the fact that SB can affect my organizational ability. As you can probably tell, I have not really done a lot of exhaustive research on SB. My wife (I've been married 1 year) has probably done more research than myself, and although I attended clinics annually as a child, I guess most of the information was passed to my mother rather than myself.

My wife and my mother both tell me how lucky I am because the bowel issues are my biggest concern. I know that in this sense I am lucky, but I don't really feel lucky. I feel that having a "mostly invisible" condition presents a different set of challenges. I am not comfortable letting people know about my condition and generally avoid doing so. I am definitely an introvert, which is possibly partly because of this. I have always struggled a bit socially, and I still find large groups very awkward. I feel anxiety whenever thinking of my condition, or the possible embarrassment of having an accident and people finding out. I hope this doesn't offend anyone who has it much worse than me, or has a child that has it worse than this.

The reason my wife and I are doing more research now is that my bowel-voiding sessions are taking up to 6-8 hours every second day. I have a cecostomy tube and have generally used a fleet enema and saline. Initially it took about 2 hours, but it has gotten worse and I haven't found anything that works better for me. I'm seeing a GI specialist who is a bit puzzled. I think part of my problem is consistency, as I have trouble doing this at the same time every day. However, I still find it odd that it would take as long as it does. It most likely doesn't help that I'm feeling some stress to work more than the regular hours, sometimes requiring that I get up quite early. My sleep schedule is a bit erratic, although I'm trying to fix that. I also find it quite difficult to exercise without having accidents.

I am now also wondering about how it's affecting my brain. My specific concerns in this area are:
- my inability to organize
- my poor short-term memory
- my indecisiveness/lack of ability to express myself in words (it took me a long time to write this, and it often takes me longer than it should to write emails)
- possibility of forming a learning disability in the future

These are things I'm afraid of, and in particular I'm afraid of them worsening so much that I won't be able to work.

Anyway, of course I need to do more research, but I just wanted to "get this all out". ]]> New Member Help Center - Introduce Yourself ilikepickles http://spinabifidaconnection.com/showthread.php?t=4791 http://spinabifidaconnection.com/showthread.php?t=4790&goto=newpost Mon, 14 May 2012 02:47:24 GMT hi folks! so i hate posting accomplishments b/c i know so many others r stuggling, but Madison has just ended a list of stuggles (sick, UTI,... hi folks!
so i hate posting accomplishments b/c i know so many others r stuggling, but Madison has just ended a list of stuggles (sick, UTI, starting cathing etc) so i figured she deserved some public recognition 4 all her hard work ...

SHE'S WALKING!!

its only a few steps unassisted, but honestly i had (almost) accepted that she never would. @just shy of 2 1/2 she surprised me by willingly & volutarily transitioning from furniture cruising 2 letting go & "toddling" towards U:)

so so so proud of my angel:clap2:

ps posted pix on my profile ]]> Off Topic Chat http://spinabifidaconnection.com/showthread.php?t=4790 http://spinabifidaconnection.com/showthread.php?t=4789&goto=newpost Sun, 13 May 2012 20:23:36 GMT Hi all!

I'm a 37 year old guy with SBO (Spaina Bifida Occulta), who is affected by his disabiity (generally SBO is considered to not have much neurological affect). I am from Southern Ontario, Canada. I'm a life long Canuck, but I am opinionated, sarcastic and mouthy!:) Love to talk abou things with people who want to know things about SPina Bifida (if I can help them). Looking forward to talk with people.

-David ]]> New Member Help Center - Introduce Yourself DavidChipman http://spinabifidaconnection.com/showthread.php?t=4789