The frequent seizures and often complex treatments for a child or adult with LGS usually require considerable time and effort by both parents. This results in 24 hour a day, seven day a week care, often putting a tremendous burden on the marriage and family. Indeed, parents of children with LGS have a very high divorce rate (up to 75%) due to this strain.
- It's important for doctors and other health care professionals to talk with families about these issues.
- Most families will benefit from social services, respite care, rehabilitation services and educational and behavioral assessments.
- This psychosocial support, utilizing a team approach with multidisciplinary assessments, is critically important and will require coordination between the pediatrician and the pediatric neurologist.
Many families do not feel comfortable leaving their child with LGS under the supervision of a babysitter, even if they are able to find one. Most have difficulty finding a babysitter who can give medication and knows what to do during each of the various seizure types. For many families, their only option is an immediate family member (grandparent, uncle or aunt) who is comfortable being responsible for the child with LGS. It is important for the parents to have time together, and if a family member is not able to watch their child, respite care may be available in some larger communities. This allows for adequate medical supervision and care of the child so the parents or family can spend an evening or weekend together. A social worker can help guide the family to resources available in their area.
The majority of children with LGS have some degree of developmental delay at diagnosis. All should be evaluated by an educational specialist (often associated with their local school district) for an early childhood intervention program. This will also include an evaluation by rehabilitation services (physical, occupational, and speech therapy) and then an individualized education plan (IEP) will be put into place for that child, based on their age and current level of function. This will need to be updated every two years. Some children may benefit from a more detailed neuropsychological assessment. Individuals performing this usually have a doctoral level degree, and are comfortable testing children with severe epilepsy who have cognitive and/or behavioral difficulties. They are usually available at comprehensive pediatric epilepsy centers. As the adolescent approaches adulthood, they can help families obtain guardianship (necessary before the 18th birthday).
A pediatric social worker will be a tremendous help in finding resources to maximize the quality of life for their child and in preparing for transition to adult care. The social worker can advise the family on resources for assistance with medical care, rehabilitation services, home equipment (if needed), respite care, and guardianship. As they enter adult ages, a social worker can supply options for day or work programs and supervised living, if appropriate. The social worker may also be able to advise the family on how to obtain home nursing care, for the child with frequent seizures (especially at night so parents can sleep and know the child is medically supervised). Most children’s hospitals have pediatric social worker available who could assist the family.
Impact on the Family Life and Siblings
Having a child who has LGS as part of the family significantly changes the family routine and the sibling’s relationships (especially as they get older). The frequent, unpredictable seizures, often associated with falls or injuries, require the child with LGS to have constant supervision.
This responsibility may be delegated to an older sibling at times. The tendency for severe seizures may make the family uncomfortable taking vacations away from home, where they would not be known to the local health care providers or where the family might be anxious about receiving the same care the child obtains at home.