-------------------------------------- SEIZURES
About a third of HD children have recurrent seizures called "epilepsy." These seizures may overshadow other medical problems because they lead to restrictions on the child's activities. Each of Rebecca's (woman in story) children developed seizures about half to two thirds of the way throughout the disease process. Seizures usually develop after the first obvious motor abnormalities. Seizures may be associated with cyanosis (turning blue) and falls, and they are very frightening to witness. A teacher or parent observing a seizure often believes that the child is dying. Teachers fear that they will need to perform CPR (this has never been necessary for any of Dr. Snodgrass's HD patients).
Controlling seizures means chronic administration of anticonvulsant drugs. It is natural to want to control seizures, but there is a danger of prescribing or administering excessive doses. It is important to carefully monitor the dosage because these drugs often increase the overall handicap of HD.
In addition to drug side effects (more frequent as the disease progresses), many young people do not receive every dose of medication prescribed. This is not drug failure, but failure of drug administration. It is quite difficult to take medication every day at the same time of day. Adolescents are often ambivalent about their medication, which reminds them of their serious illness. They often say that they have taken their medication, knowing full well that they have not.
If anticonvulsants are not working, the parent must watch the child take every single dose to make sure that it is actually swallowed. Unfortunately, some HD children have both a strong tendency to seizures AND poor tolerance of anticonvulsant medication. Therefore, some of these children can do more and will have a better life if less than maximal doses of anticonvulsant medications are used. For example, we accept the fact that the child will have an occasional seizure knowing the maximum doses of medication will make the children function much less well in school or sleep excessively.
Jodie's seizures were infrequent, occurring only at night or after waking up from a nap,and only once every four to six weeks. Her mother and her physician formed a partnership to control the seizures with minimum side effects. Dr Smith prescribed a few different medications over the years. He explained that they were just trying them and that nothing would take away Jodie's symptoms but were trying to make them slightly better.
