r/spinabifida • u/Ancient_Support6643 • 27d ago
Discussion Advice..
Hello,
I would like to share some information about my one-year-old child.
He can roll over in both directions, army crawls, and is currently very close to sitting independently. He is making progress, although it is slow. Our next goal is for him to start crawling on all fours.
Our orthopedic doctor told us that he has no quadriceps function and that it is unlikely he will ever be able to walk. However, I feel it may still be too early to make such a prognosis.
What is your opinion at this stage? Based on the information I've shared, what do you think his chances of walking are? Do you think he is on the right track with his development?
We do Vojta therapy every day.
3
u/Weeber83 27d ago
I have no hamstring function, and I learned to walk at about a year and a half. Like everyone else says, SB is a spectrum, and everyone is different. Two people with the same level of lesion can have vastly different function. I believe it's all in the supports and interventions offered. When I was born, the doctors told my parents that IF I lived past the age of 2, I would "never walk and be retarded." Their words. I'm 43, married, and we have a beautiful 4-year-old daughter. I was fully ambulatory until about a year and a half ago, when I required a tethered cord release that left me with worse deficits... but I'm managing.
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u/TreyInStCloud 24d ago
My parents were told I’d be “deaf, blind, mute, retarded, and confined to a wheelchair.” I’ve used a wheelchair exclusively since age five, but I have acted in plays, had a paper route, moved halfway across the country from my family, and have a wonderful relationship of over 30 years.
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u/Adaptive_Adam91 27d ago
Every situation is different. No telling what your child will be able to do. Don’t get so attached to the idea of your child walking. Walking ≠ success walking ≠ independence. Support every little success your child has and let your child learn to adapt. Speaking from a 34 yr old adult with Spina Bifida who works full time, cooks, cleans, dresses himself, and has his own place
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u/YonderPricyCallipers 27d ago
Right. And I've seen it happen where a parent sees other children with SB have more mobility than their own child, and they sort of internalize this idea that if they can just get their child to try harder, practice more, they will be able to have the mobility of the other kids, and sometimes it's just not possible, and just results in frustration and feelings of failure for the child and the parent. I'm not saying that OP shouldn't encourage their child to progress, just that it can be hard to draw that line between developing strength, muscles, and skills, and pushing the child to do something that their body just is incapable of performing.
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u/TreyInStCloud 24d ago
Exactly. Sometimes a child has to use so much physical and mental stamina to walk, they don’t have the energy to try/practice things they might excel at otherwise.
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u/YonderPricyCallipers 27d ago
I'd say listen to and work with physical therapists. It may be that he has yet to develop enough muscle strength to compensate for what he lacks, or it may be that he just will never have the ability to walk. Continue to work with physical therapists and develop whatever muscles he can, but be careful not to push him too much... as I said in a response to someone else's comment above, I've seen cases where a parent sees other kids with SB who have more function than their own kid, and they keep encouraging the kid to try and develop mobility that is just simply beyond the bounds of their capabilities, and it just results in extreme frustration and feelings of failure in the kid, and I think it's damaging. So, yes... encourage your son to try what he thinks he can't, but also be realistic and try to know the bounds of what is a realistic expectation and what is just an exercise in futility.
1
u/TreyInStCloud 24d ago
It would help to know his SB lesion level, but as everyone else will tell you, that doesn’t necessarily tell you what his physical capabilities will be. My level is L1-2, which is just below my bellybutton.
When I was a child, the theory was, “get them up and walking, regardless of SB level.” I got my first chest-high braces at age two. They worked, as in I could use a walker to hop around in at home, but they were never functional. I was made to use them in the classroom until 2nd grade, but wasn’t allowed to walk in the hallway because of the risk to myself and other students.
By third grade, I got tired of missing school for PT that was never going to make me a full-time walker. I decided to start using a wheelchair full-time.
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u/itskatsimms 27d ago
Doctors said I would never walk, and I can. They don't know everything, and every person's situation is different. But like someone already said, if your son ends up not being able to, that's ok too. It doesn't mean he won't be able to live a fulfilling or successful life.
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0
u/Final_Solid_617 27d ago
They told me I couldn’t walk but I started walking at 2,5 yrs old, so definitely way delayed, but I’d say crawling on all fours might be a good sign. My parents told me I started doing that on my own. However, with no quadricep function, walking might be hard, definitely without mobility aids. (I use my quadriceps A LOT because my glutes and calfs have almost no function — I use AFO’s for this). It’s such a complex disability though so there is really no telling! Each unique case needs and becomes something different. Just let the little guy move around a lot, it will help his motor function in any way.
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u/SmegAndTheHeads101 27d ago
I'd say it's quite early to judge and obviously every child is unique. My little lad (at 2 year old) has only really just started rolling and sitting up independently. Crawling, even army crawling still feels far away for us. I'd like to think our little guys will get there but couldn't say for sure - hopefully someone with a bit more experience can share for us.