Chances for child walking who has SB?

[Bigwilli]

Thanks for all the replies and support. Our baby was diagnosed with L4 MyloSB. I am curious on others experiences with their children that were told they may not walk but can either on their own or with aids. Any advice?

[angel]

My personal advice is wait and see. You never know. I have L4/L5 myleo and i have used crutches for the past 29 years (i got my crutches when i was 3 years old) I have walked with them just fine i can go anywhere. I can do stairs and everything with relative ease. I know some people with the exact same leasion level as me that can't move their legs at all. It is so vaired that you really have to wait and see.
When my son was born (he has SB occulta) i was told when he was 2 weeks old that he would walk like me. He would have to use braces and crutches to get around. In my mind i thought well that is ok that must be god's way of giving me a kid i can keep up with lol. Still i wanted to make him as strong as i could so i put him in a baby walker (the kind that all kids use with the seat and the tray that they push themselves around in) His feet didn't even touch the ground lol but i figured if i strengthened his legs that way as much as i possibly could then he would at least have an advantage. Well he stayed in that thing most of the time pushing himself backward. He was about 8 months old before he learned to push himself forward. At 13 months old he just started walking. I got a call at work from his babysitter and she was screaming telling me that he just took his first steps and he is doing it just like every other kid. She was just as excited as i was!! I took him to the clinic (i didn't have an appointment) and was like LOOK he can walk he can do it and they were very happy for him. You just never know the doctors do the best they can but sometimes these kids will just surprise you!!!
I have encouraged him to do things to improve his balance (which is about average now) we took him roller skating and he spent most of his time at first on the floor but finally found his balance and got the hang of it. He learned to ride his bike last summer (he wasn't strong enough before that to push the pedal) he was checked by the PT at clinic this winter and he was fine but i took him back yesterday after he had been riding his bike all over for the past 2 weeks and they couldn't believe how much stronger he was since the last time they had seen him. Always encourage activity and building yourself up as much as you physically can. that is my advice.

Angel
Angel

[Dodger67]

I agree with Angel - just wait & see.

I walked when I was 2. As I got older the braces got more omprehensive and heavier. This is before the lightweight plastic stuff became available - I'm talking steel and leather. I started with just ankle braces, when I gave it all up at about 13yo I was braced from feet to chest!

Parents waste far too much energy worrying about whether their kid will walk or not. Walking or not is the least of your worries - SB brings much more serious issues your child's life than walking.
If it happens, it happens and it's great - if not, it doesn't really matter all that much anyway.

[angel]

Oh Dodger we had the same braces. Mine were metal and leather and heavier than hell!!!!!!!! I wore mine until i was about 6 and my mom asked the doctor if i would ever be able to stand without them. He said not straight but we take them (the kids) out of them gradually. She finally just said one day do you want to wear those anymore. I said no and we took them off and i never wore them again. I walk bent at the hips and knees but i walk just fine and since they were not going to keep me in them and we knew that i would eventually walk bent over we didn't really see the point. My mom still has those braces and it is just amaizing to look at them and what the kids are wearing now. It is SOOOOO different.

I remember being fitted for those braces in 1979. I had to go to an "institution" for crippled children (please don't rip my head off the words crippled children were in the name of the hospital!!!) I stayed there for 3 months and my mother was allowed to only see me for one hour one day a week!!!!! I had to go back a year later so they could teach me how to go from using a walker to using crutches. That was several more weeks in that place!!!! Times have changed a lot since then haven't they.

I also agree that the walking is the least of it. Most people with SB that can't walk that you talk to say that is not the hardest part of it by far!!!!!!!!

Angel

[technovicki]

definitely a wait and see...i have L4/L5 myleo too and have always walked with AFO's (or since I was 5). i didn't have my back surgery until i was four. doctors told my parents i may not walk, might have problems in school, etc. but i walked just fine before the surgery and then learned how to walk with braces...went to regular school and took advanced classes...onto college and today work in the software industry. doctors make their best guess / predictions but it really does vary. i luckily only have experience with plastic afo's since i was born in 1978.

[angel]

we are close to the same age i was born in "77":)

[Dodger67]

Y'all are making me feel ancient!
I'm a '67 model.:p

[kali]

hi everyone dont laugh too hard at those old metal and leather braces, thats how my 9 yr old son is getting around, and I am really thankful for them. although they have changed since the 70's, instead of having special shoes to have the metal attached too, the metal slides into any normal wide shoe you can find. so all you really see when wearing is the leather strap.just recently I have seen plastic afo's here but the quality is still not the best, thats why we choosed the old faithful.... metal. as for walking I was told my son wouldnt walk, but on his forth birthday he took us by surprise, so wait and see, you never know what God has planned.

[angel]

I am glad they changed them where you can wear different shoes because the ones that used to go with them were HORRID lol. Now i am a girl and i love shoes so that may be why i had such issue with them. Would you believe my mom kept all my braces. She still has them in a closet and my old casts to. It is so funny to see them now. I never got really big i am only 4 feet tall now but to look at those things now i must not have been much bigger than a cabbage patch doll when i wore then lol.

Angel

[mommy2cnj]

I am curious on others experiences with their children that were told they may not walk but can either on their own or with aids. Any advice?

Hi.

Just wanted to add our expience(s) in....2 kids with myelo here. The 13 yo (yes, I have "inherited a teenager" while I've been away from the site.......I have to get used to typing 13 rather than 12....waaaaaaaah!!) is mainly in w/c, although does have KAFOs and walker, which, although docs have said he'll not have need for them for long (walking purposes), I am happy he still continues to have a great attitude toward getting up and around, even if it is only here and there. My youngest, 9, is walking with twister cables and a walker. She is just now starting to go 'everywhere' with them, although she has her chair available for long distance(s). Her current walker is a step up from her previous, being it has what my little one refers to as a 'cheat seat'. It's nothing major, but it's enough for her to be able to take a moment's rest during a 'longer than usual' distance, where we are striving for endurance and she is continually improving. I was originally told she'd be in her chair 99% of the time.

By the way, both of my kids are around L3-L4 level.

[misty]

My mother was told that I would never walk, never talk, and be mentally retarded at about the level of a one year old child. I also was not supposed to survive past the age of seventeen. I walked at age three with the aid of leg braces. A little late, but I did it. I can talk and have all of my other coginitive functions. I am twenty five and still kicking, literally! There is hope when the docs say a child "will never" do something.

[Dodger67]

Doctors really are a miserable tribe! You'd think it would kill them to say anything positive. The seem to love spreading their misery around too. As if expectant parents don't have enough to worry about when they have just got the news that their baby won't be "normal", the doctors pile on more by talking crap like "never walk" "mentally defective" etc.

Actually I blame the lawyers.
Doctors are simply too scared to risk saying anything positive because they get sued if they turn out to be wrong.
Nobody has ever taken a doctor to court if the patient turned out better than they predicted.

[BrinaRad]

Myelo L3-4 here, born in 74. Docs told my parents i would never walk, i did at year and a half, even ran and played sports and excelled until the tethered cord surgery at 15. Lost most of my feeling below my knee on right leg, got sore on right foot and lost leg at 22. I still walk today with prosthetic and left leg muscle and sensation seems to be deteriorating . Afer that my bowel and bladder are still my most concerning issues.

Thank God for this site, i went for years knowing what condition i had and knowing my medical problems were related to SB but was still ignorant to learn about it. And in turn, i havnt taken the best care of myself or seen doctors like i should. You guys have taught me alot and gave me the kick in the butt ineeded to start seeing doctors again and do some researrch on SB. Thanks!!

[angel]

I was born in 77 L4/L5 myleo. My parents were told the same as yours, won't live a week, never walk, be mentally retarded. The only thing they got right was the walking part. I can't walk without my crutches so technically you gotta give them at least half a point on that guess. lol

Angel

[rachiebaby]

I started out with ankle braces till i was 3 or 4 then i didn't have braces till i was 5 when i started kindergarden with ankle braces again and then later i got braces that stopped at about my shins and i still have those

[Gymp]

I'm a little late to this thread but will add my experience so that parents just finding out about SB can learn from others and myself in this group.

I was born in 1956 with SB,the lower lumbar region (just above the crack of my butt).My mother was told by the doctors that I'd not live past the age of two and if I did live I'd be an imbecile,never walk and need constant care.

Instead of learning to crawl as most babies do I only rolled to get from place to place so it looked like the doctors were right in that I'd probably not walk.My Mom and Grandmother never gave up hope,they held my hands and walked around the house with me this way for a long while and eventually my legs did start to move.By the time I was four I was lucky enough and did master walking.The achille's tendons in my legs to the feet were too short so I walked on my tip toes but I was walking.

The Orthpedic specialists corrected the walking on my toes with surgery on both feet at around the age of thirteen and when the casts came off I walked with alot less bounce in my stride.I also had scoliosis and that was corrected with two Harrington rods put in my back to keep the curvature in my spine in check and to keep me from listing to the left.

I never did well in public school and had huge problems with math,I did excel in art but at that time art wasn't very important in the school's curriculum.By the time I was finishing high school I was offered a scholarship to study art at a respected university but at that time in my life I was having way to much fun and dropped out of school altogether.As a young adult I realized the stupid mistake I had made and finished school with great marks and took an apprenticeship to become a printer as this was related to art.I finished my apprenticeship worked my way up the ladder and ended up being a production supervisor of the offset department of a large printing company.There's a lot of mathematics
in printing so I guess that improved too,lol.

The point here is that the doctors can only generalize with what their past experience is/was with SB and what the doctor's prognosis is,isn't necessarily written in stone.I did eventually learn to walk with no aids and still do,I don't think I'm an imbecile (a few people may disagree) and I've managed to live fifty years past the age of two.

There's always hope for anybody born with Spina Bifida and with lots of hard work and persistence lots can be achieved.Life is a tough road one way or the other,being born with Spina Bifida or being born without it.

Gymp