Seizures in School-Aged (6-10 Years Old) Children with Sturge-Weber Syndrome

SEPTEMBER 19, 2014

Question: What should a parent expect for their school-aged child (6-10 years old) with Sturge-Weber syndrome whose seizures are well-controlled on medicine?

Response: In general, by the age of five years or so, most children with SWS have stabilized in terms of their neurologic function and seizures. So if their seizures are well controlled, this can be expected to continue. There are exceptions however. Some children develop different kind of seizures— more subtle staring, myoclonic or even non-convulsive seizure activity. So if your child is not developing well or not doing well in school, consider this possibility.

If their seizures have been fully controlled for two or more years, the very difficult question of whether or not to come off medication can come up. This has to be considered on a case-by-case basis.

Puberty can be a time of uncertainty for patients with Sturge-Weber syndrome when seizures can get worse and stroke-like episodes can occur. Hormones can wreak havoc! Even families who have not had issues for a long time can find that seizures and migraines are becoming more of a problem, and they need to be prepared with emergency medications. Adolescence and adulthood both bring their own challenges with new stressors that can be triggers for both migraines and seizures.

Sturge-Weber syndrome is highly variable, both in terms of the extent and severity of brain involvement and their course of symptoms. However, in general, if a school age child is doing well, the parent can cautiously optimistic that this will continue. They should stay in contact with their physicians and make sure that emergency plans are in place, even as they encourage their child to broaden their horizons.

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Hunter Nelson
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