Dravet
"This is an illness that causes a lot of suffering to the families because of the great ignorance that surrounds them, as well as the symptoms of the illness itself".
DR. ROCÍO SÁNCHEZ-CARPINTERO ABAD PERSON IN CHARGE. DRAVET'S UNIT
The Dravet Unit of the Clinic is the first Spanish unit created to diagnose and carry out a comprehensive treatment of this disease.
As it is a rare disease, there are few specialists with experience in the diagnosis and management of this pathology. The Clinic is one of the Spanish hospitals that treats more children with Dravet syndrome due to our extensive experience in the treatment of difficult epilepsies.
Children suspected of having Dravet syndrome are assessed by a specialized multidisciplinary team headed by a neurologist expert in this pathology, who will indicate the treatment for epilepsy and other neurological problems.
We do not focus solely on seizures and status. We offer care according to the needs of each case of:
- Orthopedic disorders.
- Rehabilitation.
- Sleep.
- The prevention of sudden death.
- Cognitive development.
- The schooling.
For this, we have the help of specialists in Psychopedagogy, Neurophysiology, Rehabilitation, Trauma and Child Endocrinology who will intervene according to the needs of the child and what each family requires.
Teamwork to provide a multidisciplinary assessment in a single day, avoiding multiple trips that can be complicated by crises.
In addition, the experts evaluate all aspects of the child's development, including their objective cognitive assessment by the Unit's psychopedagogues.
Since it is a rare disease, there are few specialists with experience in the diagnosis and management of this pathology.
The Clinic is one of the Spanish hospitals that treats more children with Dravet syndrome.
The specialized treatment allows to shorten the number of prolonged crises and to diminish their frequency. Almost 50% of the patients treated at the University of Navarra Clinic manage to have only one crisis per month or even less, and 70% experience at least some improvement in their crises. In a significant proportion of cases, improvement is achieved by adjusting the drugs they already bring, but many children also benefit from the clinical trials.
On the other hand, there are a number of drugs, such as some antiepileptic drugs, which can worsen the crisis in these patients. In the Clinic we will offer you all the necessary information about the medications that you should avoid.
Relevant information for other doctors involved in the care of the child is collected in a special card, which the family can take with them on all trips and visits to other specialists.
In addition, we have a service for the management of special medication and the realization of drug levels to be able to adjust the antiepileptic treatment, specific pediatric rehabilitation rooms, orthopedic aids and diet service to advise the feeding guidelines that each child needs.
Dravet's Unit has a highly experienced and dedicated nurse, which facilitates parents' communication with the Clinic when their child has been discharged.
In addition, she ensures the coordination of consultations and diagnostic tests necessary for the rapid and effective care of the child.
Together with mothers of children with Dravet Syndrome, she has developed a care booklet for the child with Dravet, to take to the pediatrician and other doctors who can care for the child. This booklet is an important aid to families in managing and controlling the disease.
- In 2018 we analyzed results in 56 patients attended. There is currently experience with over 80 children with Dravet from Spain, Portugal, Panama, Peru, Argentina, Guatemala and Cameroon.
- The average age of the first consultation was 4 years and 3 months.
- 78% of the families attended more than one consultation.
- 63% of the children followed experienced improvements in crisis control.
- In 7 children drugs were withdrawn, in 22 children doses of drugs already taken were adjusted and in 31 children a different drug was started.
- 36% of children with regular follow-up at the Unit were able to benefit from new drugs in clinical trials.
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RESEARCH REFERENCE CENTER
Dravet's Unit
The Dravet Unit conducts significant research on Dravet Syndrome to develop new treatments to improve the quality of life for these patients and their families.
Comprehensive care
We have a service for the management of special medication and the realization of drug levels to be able to adjust the antiepileptic treatment, specific pediatric rehabilitation rooms, orthopedic aids and diet service to advise the feeding guidelines that each child needs.
Clinical Trials
There are several clinical trials aimed at finding effective drugs to control the epileptic crisis suffered by these children and that are often resistant to the treatments used.
Why at the Clinic?
- Teamwork to offer a valuation in 24 hours.
- Most experienced nationally in Dravet Syndrome.
Our team of professionals
Get new treatments that improve the quality of life of these patients and their families
Lines of research
- Dravet Syndrome Gene Therapy Project. Funded by donations of funds raised by families of children with Dravet and other epilepsies. We collaborated for this study with CIMA's Gene Therapy group and CIMA's Neurophysiology
Early Detection of Dravet Syndrome: Effectiveness of Clinical Crisis Scoring for Early Detection of Dravet Syndrome. - Study of Serum Markers of Cognitive Development and Epilepsy in Children with Dravet Syndrome Funded by Fundación Mutua Madrileña. In collaboration with the Department of Pharmacology and Toxicology of the Universidad de Navarra
- Brain oscillation activity in children with Dravet in response to steady state auditory evoked potentials. Partially funded by Dravet Challenge Association and Dravet Syndrome Foundation. In collaboration with the Clinic's Neurophysiology Department and CIMA.
- Study of the evolution of the cognitive and behavioral phenotype in children with Dravet.
- Clinical trial with the drug cannabidiol for the treatment of epilepsy in children with Dravet syndrome and children with Lennox-Gastaut syndrome.
- Clinical trial with the drug fenfluramine hydrochloride for patients with Dravet syndrome and Lennox-Gastaut syndrome.
- Clinical trial with the drug TAK935 for patients with Dravet syndrome.