You can also get support from organisations like Charge Syndrome Australasia, Genetic Alliance Australia and Genetic Support Network of Victoria. If you need support, you could start by talking with your GP or a genetic counsellor. If you take care of yourself, you’ll be better able to care for your child. Looking after yourself and your familyĪlthough it’s easy to get caught up in looking after your child with CHARGE syndrome, it’s important to look after your own wellbeing too. It also gives you funding for things like early intervention therapies or one-off items like wheelchairs. The NDIS helps you get services and support in your community. If your child has a confirmed diagnosis of CHARGE syndrome, your child can get support under the National Disability Insurance Scheme (NDIS). Financial support for children with CHARGE syndrome When you combine your deep knowledge of your child with the professionals’ expertise, you’re more likely to get the best outcomes for your child. It’s good to see yourself as working in partnership with your child’s professionals. These professionals might include paediatricians, psychologists, audiologists, physiotherapists, gastroenterologists, ophthalmologists, speech pathologists, occupational therapists, orientation and mobility specialists, deafblind consultants and special education teachers. You and your child will probably work with many health and other professionals as part of your child’s early intervention. Children learn the most from the people who care for them and with whom they spend most of their time, so everyday play and communication with you can help your child a lot. Early intervention includes therapies, education and other supports that will help your child reach their full potential.Įarly intervention should also include helping you learn how to spend time with your child in ways that support their development. Early intervention services for children with CHARGE syndromeĮarly intervention is the best way to support your child’s development. In most cases, genetic testing confirms the CHARGE diagnosis. Genetic testing is also recommended for diagnosis. Health professionals diagnose CHARGE syndrome by looking at a child’s medical features. Diagnosis and testing for CHARGE syndrome difficulty with focus and concentration.Ĭhildren with CHARGE syndrome generally enjoy being social and tend to have a great sense of humour.difficulty shifting attention and moving on to new things.difficulty with self-regulation, especially when children are stressed or overwhelmed.sensation-seeking – for example, seeking bright colours or strongly flavoured food.repetitive behaviour – for example, biting, pacing or talking.This affects the development of gross motor skills, fine motor skills and communication.Ĭhildren with CHARGE syndrome often have behaviour challenges because they find it difficult to communicate effectively and self-regulate. Most children with CHARGE syndrome have problems with their hearing, vision and balance. The development of these abilities can be delayed because of children’s complex medical issues. outer ear malformations like floppy ears or small or absent earlobesĬhildren with CHARGE syndrome have widely varying thinking and learning abilities.middle and inner ear malformations, which can cause hearing loss and balance problems.weakness or paralysis of the facial muscles (facial palsy).difficulty swallowing, which causes feeding problems.blocked nasal passages (choanal atresia), which causes breathing problems.a slit or groove in one of the structures of the eye (coloboma of the eye), like the iris or retina, which causes vision loss.There are some physical signs that are very common in children with CHARGE syndrome and relatively rare in other conditions. The signs and symptoms of CHARGE syndrome can vary a lot from child to child. It happens in about 1 in 10 000-15 000 births. If you have one child with CHARGE syndrome, there’s a 1% chance that your next child will also have the syndrome.ĬHARGE syndrome is a rare condition. But if you have CHARGE syndrome yourself, your chance of having a child with CHARGE syndrome is about 50%. In most cases there’s no family history of the disorder or similar conditions. It’s caused by changes in a particular gene, usually the CHD7 gene. It’s now diagnosed differently, but the name CHARGE has stayed the same:ĬHARGE syndrome is a genetic disorder. CHARGE syndrome is one of the leading causes of deafblindness at birth.ĬHARGE syndrome gets its name from the features that were originally used to diagnose it. CHARGE syndrome is a complex syndrome that causes a range of physical and health problems that vary from child to child.Ĭhildren with CHARGE syndrome tend to have problems with their senses of sight, hearing, smell, taste and touch.
0 Comments
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |