Check with your state or county social services agency. Hospitals and voluntary organizations serving people with disabilities are good resources for emotional and practical support, as are doctors and nurses. Ask these resources to help you connect with other families who are coping with hydrocephalus. Adults living with hydrocephalus may find valuable information and support from organizations dedicated to hydrocephalus education and support, such as the Hydrocephalus Association. Should you be vaccinated against meningitis? Ask your doctor if you or your child should receive a vaccine against meningitis, once a common cause of hydrocephalus. The Centers for Disease Control and Prevention recommends meningitis vaccination for preteen children and boosters for teenagers. It's also recommended for younger children and adults who may be at increased risk of meningitis for any of the following reasons: Traveling to countries where meningitis is common Having an immune system disorder called terminal complement deficiency Having a damaged spleen or having had the spleen removed Living in a college dormitory Joining the military Preparing for your appointment The timing of diagnosing a child with hydrocephalus may depend on how severe the symptoms are, when problems first appear, and whether there were any significant risk factors during the pregnancy or delivery. In some cases, hydrocephalus may be diagnosed at birth or prior to birth.Well-baby visits It's important to take your child to all regularly scheduled well-baby visits. These visits are an opportunity for your child's doctor to monitor your child's development in key areas, including: Head size, rate of head growth and overall body growth Muscle strength and tone Coordination Posture Age-appropriate motor skills Sensory abilities — vision, hearing and touch Questions you should be prepared to answer during regular checkups might include the following: What concerns do you have about your child's growth or development? How well does he or she eat? How does your child respond to touch? Is your child reaching certain milestones in development, such as rolling over, pushing up, sitting up, crawling, walking or speaking? Preparing for other doctor visitsIf you're seeing a doctor because of the recent onset of symptoms, you'll likely start by seeing your primary care doctor or your child's pediatrician. After an initial evaluation, your doctor may refer you to a doctor who specializes in the diagnosis and treatment of conditions that affect the brain and nervous system (neurologist).Be prepared to answer the following questions about your symptoms or on your child's behalf:In a paper published today in Nature Communications, an international group of collaborators led by researchers at UPMC Children's Hospital of Pittsburgh have identified a genetic cause of a rare neurological disorder marked by developmental delay and loss of coordination, or ataxiaThe disorder, scientists found, is caused by mutations in a protein called GEMIN5--one of the key building blocks of a protein complex that controls RNA metabolism in neurons. No mutations in GEMIN5 were previously linked to any genetic disease."It's just like building a house," said senior author Udai Pandey, Ph.D., associate professor of pediatrics, human genetics and neurology at the University of Pittsburgh School of Medicine. "You take out the most important brick at the base and the whole building falls apart."GEMIN5 is part of a protein complex that regulates a slew of important cellular processes, including development of specialized outgrowths from nerve cells called dendrites and axons. Interestingly, mutations in another key protein of the complex, named survival motor neuron protein, cause a different devastating disorder--spinal muscular atrophy.To gather material for the study, Pittsburgh researchers contacted pediatricians, geneticists and neurologists from all over the globe, eventually collecting data from 30 patient families in 12 different countries.Because isolating live neurons from people isn't possible, researchers had to come up with another way of getting samples for future testing. They collected blood samples from pediatric patients who were referred to neurogenetic clinics with undiagnosed neurological symptoms. Blood samples were then processed to isolate cells that, with careful tinkering in the lab, were reprogrammed into neurons.After comparing genetic material of reprogrammed neurons from sick children with that of unaffected relatives, scientists linked neurologic manifestations of the disease to 26 mutations in the GEMIN5 gene that cause damage to the structure of the protein.