What is a seizure doctor's child

Doose Syndrome - a rare form of childhood epilepsy

The illness

In epilepsy, seizures are repeated. During a seizure, functions in the brain are temporarily disrupted. Like a hurricane, everything suddenly gets mixed up in your head. As suddenly as a seizure comes, it usually stops again.

There are many different forms of epilepsy. Doose syndrome is a rare form of childhood epilepsy, affecting approximately 1 in 10,000 children. The disease usually begins between 1 and 5 years of age. Boys are more often affected than girls. As a rule, at the onset of the disease, the children are physically and mentally developed in accordance with their age.

During a seizure, both halves of the brain are completely affected, not just individual parts. They say this epilepsy occurs generalized on.

The brain looks normal in examinations. The exact cause of Doose syndrome is unknown. It is assumed that there is a hereditary predisposition. Sometimes parents or siblings have had similar seizures as well.

The course of the disease varies from child to child. In many children the disease "grows together" after several years. Others continue to have seizures despite treatment and the child's mental development is impaired. It is impossible to predict how the disease will develop in your child.

Signs and complaints

Doose syndrome is characterized by different types of seizures. These can vary in severity and occur several times a day. The muscles can cramp (myoclonic) or suddenly slacken (astatic). Hence the Doose Syndrome too Epilepsy with myoclonic-astatic seizures called. The children fall unexpectedly to the ground or suddenly collapse (Falls). Sometimes only the head falls forward or the eyelids twitch briefly. Often the children get up again immediately after a fall because the seizure has already passed. It is rare that they remain unconscious. If the child falls down, they cannot make any protective movements and are seriously injured - especially in the head. Lacerations, concussions and broken teeth can occur. Pauses in awareness - so-called Absence - occur. That is, the children are briefly mentally absent.

During the seizures, those affected do not perceive their surroundings. Over time, their development can be delayed. If left untreated and uncontrolled, permanent intellectual disabilities can occur.

The treatment

Every child reacts differently to the treatment. Therefore, it should be tailored to your child personally. Together with the treatment team, you can find out which treatment works best for your child and which it tolerates best.

There are several medications that can suppress the seizures. Your child will likely need these medicines for several years. Your medical team should advise you on the correct use and possible side effects. To prevent seizures, it is important to take the medicine regularly and at set times as prescribed. In some children, the drug significantly improves symptoms. But it can also happen that it does not work or that the seizures even increase. Then another drug can be prescribed or several drugs can be combined. Certain hormones can also be used.

According to experts, if the seizures are not adequately suppressed with medication, a special one comes along ketogenic diet in question. This is a very high fat but low carbohydrate diet. It takes place under professional nutritional advice and only works if the child and their parents adhere to the strict diet rules. This requires a lot of discipline, because the diet can last for months to years. How the ketogenic diet works in the body is ultimately unclear. Constipation, tiredness and vomiting are common side effects. There is evidence from case series that some children with Doose Syndrome become seizure free this way. The diet can be done with or without medication.

What you can do yourself

  • How a seizure works is important. If possible, pay attention to the peculiarities of each seizure. It can be helpful to observe the child's seizures closely and to record everything, for example in a diary or as a video recording. Check the watch so you can tell later how long the seizure lasted. The better you can describe everything to the medical team afterwards.

  • You can learn how to behave properly if your child has a seizure. Even if it looks scary, an attack is rarely life-threatening. Try to keep calm. Remove objects that are lying around so that your child does not injure themselves. Do not stop the movement during the seizure. Wait for the seizure to stop on its own.

  • If the seizure does not stop spontaneously, give your child an emergency medication after 2 minutes at the latest, which the doctor has prescribed for this case.

  • With support, everyday life is easier to cope with. If necessary, you can receive psychosocial support as a family. It can also be useful to seek psychological or psychotherapeutic help. Check with your treatment team.

  • Your child may be entitled to a severely disabled person's ID. Inquire at the responsible supply or state office.

  • Find out about self-help organizations and share your experiences with other people affected, for example at group meetings.

May 2019, published by the German Medical Association and the National Association of Statutory Health Insurance Physicians