Seizures and Mood: Phenobarbital and Primidone (Mysoline)

Although phenobarbital is effective for controlling seizures, it commonly increases hyperactivity and it is therefore not recommended for use in patients with FXS or other developmental disabilities. Primidone (Mysoline) may also exacerbate hyperactivity because it is metabolized to phenobarbital.

Seizures and Mood: Phenytoin (Dilantin)

Phenytoin (Dilantin) is effective for all types of partial seizures, generalized tonic clonic seizures, and status epilepticus. Side effects include gingival hyperplasia, hirsutism, acute cerebellar ataxia, and idiosyncratic allergic reactions. It can also lower serum folic acid levels, which is of concern in patients with FXS because behavioral improvements can be seen with high serum folic acid levels (Hagerman et al. 1986; Turk 1992). There is animal evidence that long-term use of phenytoin is associated with cerebellar atrophy, and phenytoin has the most significant cognitive effects, including memory and performance deficits, of the commonly used anticonvulsants (Trimble 1987). It is, therefore, not the drug of choice for seizures, but it is certainly an effective alternative drug if carbamazepine or valproic acid are not beneficial. If possible, serum folic acid levels should be brought to the normal range in individuals treated with phenytoin to avoid possible deleterious long-term effects of a lowered folic acid level in FXS.

Seizures and Mood: Swallowing

The use of medications in children with FXS often poses a problem if the child cannot swallow a capsule or pill. Although some medications come in liquid form, most do not. Typical pill-taking training programs were reviewed by Pelco et al. (1987); they include modeling or demonstration and contingent reinforcers. Babbit et al. (1991) described a behavioral training program for swallowing capsules designed for children with developmental delays that begins with swallowing oblong cake decorations (sprinkles) and then moves to Tic Tacs and on to increasing sizes of gelatin capsules.

This article is not intended to give medical advice for individual cases.  Any change in medical treatment should be done in consultation with appropriate medical personnel. This article is written for medical professionals.  Some of the terms will be unfamiliar to those who are not trained in medical fields. *This article is from the chapter on treatment in the 3rd edition of Fragile X Syndrome: Diagnosis, Treatment, and Research edited by Randi Jenssen Hagerman, M.D. and Paul Hagerman, M.D., Ph.D., to be published May 2002.  It is included with permission from The Johns Hopkins University Press. References to other chapters refer to chapters in the book which are not included as part of this website. The complete 3rd edition of Fragile X Syndrome: Diagnosis, Treatment, and Research can be ordered from the National Fragile X Foundation by calling 1-800-688-8765 or from The Johns Hopkins University Press at 1-800-537-5487.

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