ENParents who first look into epilepsy treatment for children in Germany usually have two questions: is the diagnosis right, and has everything been tried? At home a second or third drug has been started, and the seizures are still there.
This page explains how paediatric epilepsy care differs from adult care, how German clinics re-check the diagnosis, the options after two failed drugs and what one trip can realistically achieve. See also treatment of children in Germany.
Why epilepsy in children is treated differently
Because in children epilepsy is not one disease but dozens of conditions, from benign forms that disappear by the teenage years to severe syndromes of the first year of life. The form decides both the drug and the outlook, so a paediatric neurologist asks in such detail how the seizures look.
The second difference is the goal. In a child, doctors count speech, attention, sleep and school progress, not only seizures. A drug that stopped the seizures but slowed the child down counts as the wrong choice in Germany and is changed.
The third difference is time. A growing brain quickly fixes what it is taught, so lost months cost more than in an adult; a German doctor will revise the regimen sooner rather than wait a year to be safe. For adults, see epilepsy treatment in Germany; general facts are in the WHO fact sheet on epilepsy.
How the diagnosis is confirmed in Germany
The key investigation is long-term video-EEG monitoring: the child is filmed while the EEG records the brain’s electrical activity, for hours or days, sleep included. The doctor sees the seizure itself and what the recording shows during it. This is where a diagnosis brought from home often changes.
Also involved: a brain MRI following an epilepsy protocol, a paediatric neurologist’s examination, an assessment of development and speech, genetic tests where an inherited form is suspected, and sometimes metabolic studies. None of it is ordered as a package; everything follows what the monitoring showed.
Home documents that carry weight: earlier EEG recordings as files, not only reports, MRI images as files, a list of every drug with doses and dates, a seizure diary and short phone videos of a seizure. The video often tells the doctor more than a folder of discharge letters. Severe first-year syndromes have their own pages, among them West syndrome.
What is used: drugs, diet, stimulation, surgery
The basis is anti-seizure medication. In Germany it is matched to the form of epilepsy rather than simply to age; blood levels are checked when needed, side effects and learning are followed, and the drug is changed if seizures persist beyond a reasonable period.
When two properly chosen, tolerated drugs have not stopped the seizures, the doctor speaks of drug-resistant epilepsy, as defined by the International League Against Epilepsy (ILAE). Other routes are then discussed: a high-fat, low-carbohydrate ketogenic diet supervised by a dietitian and a doctor, vagus nerve stimulation with an implant, and in some children a surgical assessment. None is an alternative to medication: all are prescribed by a doctor and need follow-up.
About surgery, honestly: removing a focus is offered only when the work-up shows one limited focus that can be removed without losing important functions, and a board, not a single surgeon, decides. More on epilepsy surgery in Germany. The current German medical society guideline on epilepsy in adults sets the same threshold: after two failed drugs, the surgical option is checked.
Where this is done and by whom
Paediatric epilepsy in Germany is handled by neuropaediatric departments in children’s hospitals and by specialised epileptology centres. Among AlenMed’s partners are the Dr. von Hauner Children’s Hospital at the Munich university hospital, where Prof. Florian Heinen heads the neuropaediatric department, and the University Hospital Bonn, which has a separate Clinic and Polyclinic for Epileptology under Prof. Rainer Surges.
The team: the paediatric neurologist, an EEG specialist, a neuroradiologist, a paediatric neurosurgeon when surgery is discussed, plus a psychologist and a speech therapist, because once the regimen works a child often has to catch up on speech and attention.
School, development and family life
Parents ask what is rarely written about: school and swimming, PE lessons, how to explain seizure first aid to a teacher, whether the child needs a particular sleep routine. A German doctor puts this in writing, and it is worth asking for separately.
What to take home: a report naming the form of epilepsy, the dosing schedule and the monitoring plan, copies of the EEG and MRI files, and an agreement on when and on which signs to contact the clinic. Without that, the doctor at home has to start from scratch.
Frequently asked questions
Can we send documents before deciding on the trip?
Yes, care usually starts with the documents. EEG recordings, MRI images, the drug list and seizure videos go to a neuropaediatric department, whose doctor says whether monitoring is needed. The family then gets a written estimate and decides. Diagnosis and treatment plan come only after the child is seen in person.
What if two drugs have not helped?
The diagnosis is re-checked, then other routes are discussed. The team first checks that the seizures are epileptic and the drugs suited their form. If so, a ketogenic diet, vagus nerve stimulation or a surgical assessment come into question, each prescribed and followed by a doctor. Nobody can say in advance which will suit your child.
What should we bring to the hospital?
Everything that shows the whole history: earlier EEG recordings and MRI images as files, a list of every drug with doses and dates, a seizure diary and phone videos of a seizure. For the trip: enough medication for the whole stay, familiar food and favourite things for the monitoring unit.
How AlenMed arranges epilepsy care for a child
AlenMed starts with the documents: EEG recordings, MRI images and the drug list go to a neuropaediatric department, whose doctor answers whether monitoring is needed, for how long and what to add. Then come a written estimate, a visa invitation, a room for a parent next to the child and an interpreter at appointments and when the report is discussed: doses and seizure signs must not be lost in translation.
Plan ahead: enough current medication for the whole trip, familiar food and things for the days in the monitoring unit, unhurried time to discuss the report, and translation of the final documents for the doctor at home.
This material is for information only and is not an offer. The diagnosis and treatment plan are decided by a doctor in person.