Neurocutaneous Syndromesenparentshttps://kidshealth.org/EN/images/headers/P-neurocutaneous-enHD-AR1.jpgNeurocutaneous syndromes are genetic disorders that lead to tumor growth in various parts of the body. Learn how to maximize the quality of life for children with these diseases.neurocutaneous syndromes, neurofibromatosis, sturge-weber, neurofibromatosis, nf1, nf2, tuberous sclerosis, ts, ataxia-telangiectasia, a-t, von hippel-lindau disease, vhl, tubers, cancers, neurology, oncology, hematology, birth defects, genetics, cafe au lait spots, tumors, port wine stains, seizures, hearing loss, auditory nerves, lisch nodules, blindness, vision, occupational therapy, physical therapy, speech therapy, kidney failures, angiomas, glaucoma, ataxia, muscles, wheelchairs, blood vessels, CD1Neurology, CD1Hematology, CD1MAP07/31/200008/26/201909/02/2019KidsHealth Medical Experts7e9e3b3a-59da-4998-8655-57927110240fhttps://kidshealth.org/ws/RadyChildrens/en/parents/neurocutaneous.html/<h3>What Are Neurocutaneous Syndromes?</h3> <p>Neurocutaneous syndromes are disorders that lead to growth of tumors in various parts of the body. They're caused by the abnormal development of cells in an embryo and characterized by the tumors in various parts of the body (including the nervous system) and by certain differences in the skin.</p> <p>While some can be diagnosed at birth, others don't produce symptoms until later in life. Although neurocutaneous syndromes can't be cured, treatments can help manage symptoms and any health problems that occur.</p> <p>Recently, important advances have been made in using DNA testing to confirm these syndromes in some people.</p> <h3>What Are Some Types of Neurocutaneous Syndromes?</h3> <p>Common neurocutaneous syndromes that affect kids include:</p> <ul> <li><a href="https://kidshealth.org/ws/RadyChildrens/en/parents/nf.html/">Neurofibromatosis, Types 1 and 2 (NF1 and NF2)</a></li> <li><a href="https://kidshealth.org/ws/RadyChildrens/en/parents/sturge-weber-syndrome.html/">Sturge-Weber Syndrome</a></li> <li><a href="https://kidshealth.org/ws/RadyChildrens/en/parents/tuberous-sclerosis.html/">Tuberous Sclerosis (TS)</a></li> <li>Ataxia-Telangiectasia (A-T)</li> <li>von Hippel-Lindau Disease (VHL)</li> </ul> <p>Symptoms vary widely from condition to condition, and they affect different kids in different ways. Often, the full effects of these diseases &mdash; even if detected at birth &mdash; don't emerge until a child grows up. The educational, social, and physical problems that the conditions cause must be managed throughout a child's life.</p> <h3>How Can Parents Help?</h3> <p>Early intervention is important to help your child achieve the best quality of life possible.</p> <p>It's important that your child is cared for by a team of medical experts.&nbsp;<span style="font-size: 1em; line-height: 1.4em;">Treatment should prevent or minimize complications and maximize a child's strengths. Keep these tips in mind:</span></p> <ul> <li><span style="font-size: 1em; line-height: 1.4em;"></span><span style="font-size: 1em; line-height: 1.4em;">Positive reinforcement can strengthen your child's self-esteem and foster a sense of independence. Let your child find out what he or she is capable of, especially regarding daily living skills.</span></li> <li><span style="font-size: 1em; line-height: 1.4em;"></span><span style="font-size: 1em; line-height: 1.4em;">Support groups can be help helpful, so seek out local chapters that address your child's particular illness. They provide a supportive social environment, and are a great way to share knowledge and resources.</span></li> <li><span style="font-size: 1em; line-height: 1.4em;"></span><span style="font-size: 1em; line-height: 1.4em;">Psychotherapy or other supportive treatments can boost your child's self-esteem and coping skills, so ask the treatment team for referrals. Therapy also can help other family members deal with the stress involved in caring for a child with a chronic illness or disability.</span></li> <li><span style="font-size: 1em; line-height: 1.4em;"></span><span style="font-size: 1em; line-height: 1.4em;">Physical, occupational, or speech therapy can help your child improve some of the developmental delays caused by the specific illness.</span></li> <li><span style="font-size: 1em; line-height: 1.4em;"></span><span style="font-size: 1em; line-height: 1.4em;">Check with your local hospital or university for seminars about neurocutaneous syndromes.</span></li> </ul> <p>Many&nbsp;<a href="https://kidshealth.org/ws/RadyChildrens/en/parents/hospital-staff.html/" style="line-height: 16.8px;">medical professionals</a>&nbsp;might care for your child during diagnosis and treatment. These professionals can&nbsp;include a family practitioner, pediatrician, neurologist, neurosurgeon, orthopedic surgeon, oncologist, geneticist, and ophthalmologist. A&nbsp;<a href="https://kidshealth.org/ws/RadyChildrens/en/parents/genetic-counseling.html/" style="line-height: 16.8px;">genetic counselor</a>&nbsp;also can provide&nbsp;information about genetic testing and the risk of passing the disease on to another child.</p> <p>Remember that although each of these conditions is challenging, supportive therapies and treatments can help both you and your child.</p>
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kh:age-allAgesOrAgeAgnostickh:clinicalDesignation-geneticskh:genre-articlekh:primaryClinicalDesignation-neurologyBrain & Nervous Systemhttps://kidshealth.org/ws/RadyChildrens/en/parents/medical/brain/d6b00a11-9db0-403c-bc41-00bcdf022537Cancer & Tumorshttps://kidshealth.org/ws/RadyChildrens/en/parents/medical/cancer/088d4c52-cd61-4cca-af46-82de410d892aGenetic, Chromosomal & Metabolic Conditionshttps://kidshealth.org/ws/RadyChildrens/en/parents/medical/genetic/d50d4cf8-0cb6-4a6b-8d58-1fe7996c491eLearning Disordershttps://kidshealth.org/ws/RadyChildrens/en/parents/medical/learning/ec5e6230-07cd-48f8-8d19-78d04d52dc5dCaring for a Seriously or Chronically Ill Childhttps://kidshealth.org/ws/RadyChildrens/en/parents/system/ill/079ac5d4-e734-4351-a7f0-3bd2b4dd9d93