Once a person has received a diagnosis the help available will be dependent on their age and level of development and learning. However, many therapies and supports may help individuals with ACC and other disorders of the corpus callosum lead more successful lives.
Children
Changes in the corpus callosum are often diagnosed during childhood because of concerns about development, speech, or other problems such as seizures. It is likely that your child will have had a number of investigations as well as the brain scan such as blood and urine samples. This is often a time where there are a number of appointments with different professionals, including an ophthalmologist (eye specialist), endocrinologist (hormone specialist) and clinical geneticist for their opinions. This can be a frustrating time as it can feel that no-one knows what is wrong with your child.
The majority of children will have a paediatrician (often a community paediatrician) who will be able to assess their development, coordinate their care and put you in touch with other professionals and therapists, such as social workers, occupational therapists, physiotherapist and speech and language therapists. The involvement of health professionals will depend on the level of difficulties your child has. Numerous hospital appointments can be difficult for families to organise and keep track of. This may change as your child grows and you may find it useful to keep a record of the people involved in his/her care.
Do not be afraid to ask questions and find out as much as you can about your child’s individual problems. The answers may be helpful in making decisions about your child’s current and future needs. Every child is an individual and although he/she is likely to share some of the features of ACC with other affected children he/she will still have their own unique personality and developmental path. It is not possible to predict exactly what will happen to a child as they grow up or what level of care they will require, although the health professionals involved in your child’s care will be able to give you more advice and support about this issue. For many parents it is a matter of ‘wait and see’.
School
Children who have a diagnosis before they start school will already be involved with a Paediatrician and possibly a Child Development Team. Your paediatrician will know whether your child is likely to need any extra support when they start school and, with your permission, will inform the Education Department so they can gather information from everyone involved with your child and make sure they have the right support from the very beginning of their school life.
Some children will have already started at school by the time the diagnosis is made and you may or may not be aware of difficulties they are experiencing. You may find it useful to arrange to talk to your child’s teachers to explain the changes that have been found and discuss your child’s progress in more detail. It is unlikely that any of your child’s teachers will have heard of callosal abnormalities or had experience of dealing with children with the condition so your Paediatrician will be able to give you some information to show to the school. Your child may require extra help at school and it is best to talk to your child’s teachers and the SENCO (Special Educational Needs Coordinator – each school has a teacher who has had additional training with children who need support) about what help they may need and how this may be provided. Your child’s school may be able to assess this and provide the support, or they may feel your child needs a deeper assessment of their strengths and weaknesses by an Educational Psychologist.
As children get older some of the social and communication problems associated with ACC can become more obvious (see section on effects of ACC). It may be helpful to talk to your child’s teacher about this. Although we cannot change the brain malformation itself many of the challenges faced by an individual with ACC are amenable to appropriate help and intervention. Speech and Language Therapists and Psychologists may be able to help your child in these areas. It is important that, where possible, you talk to your child openly about issues as they come up and develop strategies together to deal with them.
Adults
Occasionally a callosal abnormality can be found as an incidental finding on a scan done for another reason, such as a head injury. In others, development of other problems such as seizures may prompt further investigations like a brain scan. For a person diagnosed in late adolescence or adulthood the diagnosis can come as a considerable shock as they are often unaware that there has been any change in the way their brain has formed. For some individuals it can feel like an explanation for difficulties they have experienced throughout their life.
It may be useful to talk to a neurologist about the changes on a scan in more detail. If this has been an incidental finding and you are otherwise well there are often no regular medical checks that need to be arranged. As the findings on the brain scan will not change it is unlikely that this will affect your health in new or unexpected ways. You may find it useful to talk to a clinical geneticist if there have been any other unexplained developmental problems or there are concerns about other members of your family.