Seizure Diaries for Adrenoleukodystrophy

Seizure Diaries for Adrenoleukodystrophy
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Seizures are a common symptom of childhood cerebral adrenoleukodystrophy (CALD), especially as the disease progresses. Rare cases of seizures in people with adult-onset adrenoleukodystrophy (ALD) also have been reported.

If you are the caregiver of someone who has ALD, you may want to keep what are called seizure diaries. Here are some things to know.

What is ALD?

ALD is a genetic condition affecting the nervous system and adrenal glands, which secrete different necessary hormones. It is most common in males, manifesting with neurological and behavioral symptoms. However, the symptoms may vary widely according to the type of ALD and the patient’s age.

People with ALD usually display symptoms of neurologic impairment and adrenal insufficiency — a condition in which the adrenal glands are not able to produce enough hormones.

What are seizures?

Seizures are sudden electrical disturbances in the brain that disrupt its ability to function. They can have an effect on mood, behavior, and consciousness. In CALD, the buildup of saturated very-long-chain fatty acids (VLCFAs) inside cells progressively increases brain inflammation and damages the protective coating on nerve fibers, in some cases causing seizures.

What are seizure diaries?

Seizure diaries are tools to record when seizures happen. The information recorded in the diary can help patients and caregivers track when seizures happen, which can help identify whether there are any specific triggers. Doctors and other healthcare team members can use such diaries to see how effective the patient’s treatments are, and to plan future therapies.

Doctors may treat seizures with anti-seizure medications, dietary changes, and vagus nerve stimulation (VNS). VNS prevents seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve, located in the neck.

How do I use the diary?

In the diary, record times, dates, and duration of seizures and their effects, for example, on memory. It might be helpful to ask the patient’s healthcare team what information they would like noted. Be sure to take the diary with you to each appointment.

Diary contents also can include:

  • What medications the patient took and when
  • Medication side effects
  • Any other symptom or illnesses that the patient experienced at the time of the seizure
  • How the patient seemed to be feeling before the seizure
  • What the patient ate or drank before the seizure
  • Whether the patient’s diet changed, and if so, when
  • Medical team contact information
  • Other notes of interest about each episode, including whether the seizures have changed or are lasting longer, or are becoming more frequent

Where can I obtain seizure diaries?

You can print out a sample diary template, or keep your own record online. The Epilepsy Society in the U.K. offers a template that you can download and edit according to your needs.

If you’d like to have your diary as a smartphone app, the Epilepsy Foundation offers one.  In addition, Epilepsy Ireland has an application available for iPhone and Android.

 

Last updated: Aug. 26, 2020

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Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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