What Are Long Term Effects of Spina Bifida?

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These messages are for mutual support and information sharing only. Always consult your doctor before trying anything you read here.
I'm trying to find 2nd opinions or questioning the advice my ex husband has been given regarding my son's bowel functions and issues. He was born and treated in Loma Linda since 2003.
What is the condition and what do you want to double check on?
My son was born in 1993 with Spina Bifida. Bowel issues can vary depending on severity and location of the lesion. My son can walk independently using AFO braces, but has no bowel or bladder control. Therefore he must catch at least 4 times per day.
My 7 year old daughter has spina bifida too!!! She was born with a broken leg and now she's got another one. Does anyone know if people with spina bifida have weak bones?
Spina Bifida is linked to weak muscle strength. A kid can have weak muscle, numbness in buttlock, legs and feet, and these may lead to more frequent fall-off, which eventually leads to leg bone fracture. Also you may test the blood calcium of your kid, see if she gets enough calcium for healthy bone growth. Although it can be hard, 60 minutes a day physical activity is encouraged for your kid, of course when she recovers. But make sure an adult is supporting and protecting her from falls.
Thanks for sharing. My son was born in 2010, he can walk and run fine ever since a toddler, I didn't notice anything abnormal until he got 5 years ago and he couldn't completely control his bowel movement. We've had MRI, there's nothing wrong showing in the MRI. But the Dr. said he has Spina Bifida, which damages his nerves slightly, causing the incontinence. My son has a small round hole at the bottom of his lumbar spine, Dr. said it's a Spina Bifida special thing. I always thought the small hole was so lovely until the Dr. said so. Also my son's anal muscle is weak, as the Dr. said after physical test. I feel I'm lucky cause my son is generally fine and this little incontinence thing we can handle. He can run, he can walk, he can swim, I already feel grateful. And I'm sorry to know your kid is having this too. I'd pray for kids undergoing such and wish they get better day by day.

Physical problems

Physical signs of spina bifida may include:

* Leg weakness and paralysis

* Orthopedic abnormalities (i.e.,club foot, hip dislocation, scoliosis )

* Bladder and bowel control problems, including incontinence, urinary tract infection and poor kidney function

* Pressure sores and skin irritations

* Abnormal eye movement

Neurological problems

Many individuals with spina bifida have an associated abnormality of the cerebellum. In affected individuals, the back portion of the brain is displaced from the back of the skull down into the upper neck. In about 90% of the people with spina bifida,  hydrocephalus also occurs because the displaced cerebellum interferes with the normal flow of cerebrospinal fluid, causing an excess of the fluid to accumulate. In fact, the cerebellum also tends to be smaller in individuals with spina bifida, especially for those with higher lesion levels.
The  corpus callosum is abnormally developed in 70–90% of individuals with spina bifida. This affects the communication between the left and right brain hemispheres. Further,  white matter tracts connecting posterior brain regions with anterior regions appear less organized. White matter tracts between frontal regions have also been found to be impaired.
Cortex abnormalities may also be present. For example, frontal regions of the brain tend to be thicker than expected, while posterior and parietal regions are thinner. Thinner sections of the brain are also associated with increased cortical folding Neurons within the cortex may also be displaced.

Executive function

Several studies have demonstrated difficulties with executive functions in youth with spina bifida, with greater deficits observed in youth with shunted hydrocephalus. Unlike typically developing children, youths with spina bifida do not tend to improve in their executive functioning as they grow older. Specific areas of difficulty in some individuals include planning, organizing, initiating, and working memory. Problem-solving, abstraction, and visual planning may also be impaired.  Further, children with spina bifida may have poor cognitive flexibility. Although executive functions are often attributed to the frontal lobes of the brain, individuals with spina bifida have intact frontal lobes; therefore, other areas of the brain may be implicated.
Individuals with spina bifida, especially those with shunted hydrocephalus, often have attention problems. Children with spina bifida and shunted hydrocephalus have higher rates of ADHD than children without those conditions (31% vs. 17%). Deficits have been observed for selective attention and focused attention, although poor motor speed may contribute to poor scores on tests of attention. Attention deficits may be evident at a very early age, as infants with spina bifida lag behind their peers in orienting to faces.

Academic skills

Individuals with spina bifida may struggle academically, especially in the subjects of mathematics and reading. In one study, 60% of children with spina bifida were diagnosed with a learning disability. In addition to brain abnormalities directly related to various academic skills, achievement is likely affected by impaired attentional control and executive functioning. Children with spina bifida may perform well in elementary school, but begin to struggle as academic demands increase.
Children with spina bifida are more likely than their peers without spina bifida to be dyscalculic. Individuals with spina bifida have demonstrated stable difficulties with arithmetic accuracy and speed, mathematical problem-solving, and general use and understanding of numbers in everyday life. Mathematics difficulties may be directly related to the thinning of the parietal lobes (regions implicated in mathematical functioning) and indirectly associated with deformities of the cerebellum and midbrain that affect other functions involved in mathematical skills. Further, higher numbers of shunt revisions are associated with poorer mathematics abilities. Working memory and inhibitory control deficiencies have been implicated for math difficulties, although visual-spatial difficulties are not likely involved. Early intervention to address mathematics difficulties and associated executive functions is crucial.
Individuals with spina bifida tend to have better reading skills than mathematics skills. Children and adults with spina bifida have stronger abilities in reading accuracy than in reading comprehension.  Comprehension may be especially impaired for text that requires an abstract synthesis of information rather than a more literal understanding. Individuals with spina bifida may have difficulty with writing due to deficits in fine motor control and working memory. 

 Not all these symptoms could happen to you.