Management & Treatment of AHC
There are, as of yet, no specific therapies which are uniformly effective in eliminating the episodes associated with AHC. Most doctors focus on trying to reduce or eliminate the abnormal movements which are often so disabling in this disorder. Antiepileptic drugs are often used to try to reduce the frequency or severity of the movement disorder episodes, but are unfortunately rarely effective. However, in the child that also has "true seizures" in addition to other types of episodes, prevention of these episodes with antiepileptic medication is important, since prolonged seizure activity in these children can be associated with significant regression or loss of function.
Sleep can be helpful in shortening episodes, and sometimes physicians will prescribe medications to help induce sleep for this reason. These medications include chloral hydrate or benzodiazepines such as valium or midazolam. These latter drugs can work on both epileptic and non-epileptic events in some cases.
Proactive management strategies to optimize nutrition and physical well-being are extremely important in maximizing developmental outcomes and improving quality of life. Learning disabilities should be identified and a specific treatment plan initiated as early as possible. Depression and behavioral problems also need to be addressed proactively, and sometimes specific medications directed to these problems can be helpful.
Following diagnosis in children with AHC, it is important that everyone on the care team work closely with parents in order to anticipate problems and pursue management aggressively to optimize outcomes. This is often extremely frustrating because attempts to limit episodes with medications often prove ineffective, and the associated side effects may worsen rather than improve quality of life.
Rapid changes in medication may aggravate symptoms in these children, and if possible, one medication at a time should be tried and a full assessment of that medication be made before moving on to the next medication. Because of the tremendous variability in these children, an individualized approach is often necessary. Far too often, respiratory, nutritional and even physical rehabilitation interventions are reactive rather than proactive.
