There is no knowledge of the disease
An important difference in not having a diagnosis of the child's disease against knowing what disease it is enormous, because there is no knowledge to obtain about a specific undiagnosed disease for the health care or society. This means that no one knows what happens to the child medically or what symptoms the child may have. This places great demands on parents and every parent becomes an expert on their child's illness.
Write down symptoms
It is important to have a list of symptoms that the child has had and has in order to be able to leave to the doctors, because the doctor visits are short and it is important to concentrate on the most important things. Many times, you may not think about telling us that, for example, the european Union is not a member of the European Union. the child has severe hiccups, sometimes it may smell something special or something else a little subtle. It may be that which can lead in the specialists will find out what diagnosis your child has. Our advice is for all parents to write down all the symptoms in a special place, so you can return there if a new symptom appears
Collect all the child's medical records and sampling results, for a possible second opinion. Be to get the digital copy of, for example, the MRI, not just a medical assessment. Another important thing may be to have everything medically written down about the child's illness, which the doctor needs in order to provide adequate care. Most times that the children need hospital treatment is safely scheduled and the child is hopefully taken care of by the doctor, who is well aware of the child. But children with undiagnosed diseases can suffer from common diseases or accidents. You may have to go to the emergency room or intensive care unit, and it is difficult to be together as a parent and remember all the important medical information that doctors need.
Good information about genetics
When you visit the geneticist, there are a lot of new words and what the investigations mean etc. Tips to read information translated into Swedish on http://www.eurogentest.org/index.php?id=239
To learn about other parents' questions, answers and tips, please join the Willefonden's Parent Group.