Seizure Diaries for AADC Deficiency

Seizure Diaries for AADC Deficiency
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Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare genetic disorder that causes communication problems between nerve cells in the brain and the body. As a result, patients with the disease develop movement disorders among other symptoms. Many patients also experience seizures. Seizure diaries can help identify potential triggers, and keep track of medications and their side effects.

What is a seizure diary?

A seizure diary is a document you can use to log every seizure with as much detail as possible. Caregivers can use a seizure diary to determine specific things that may trigger a seizure, such as time of day, food, scents, or activities.

If you are caring for a child with AADC deficiency, you should keep a log of medications, treatment schedules, and any side effects you observe from the treatments.

Having all of this information written down in one location allows you and your child’s doctor to identify patterns and optimize treatment. In AADC, the goal of any treatment is to improve patients’ quality of life.

Types of seizure diaries

Seizure diaries can be in the form of a paper log or an online or mobile device record. You should talk to your child’s doctor to see if they prefer one over the other.

Many people prefer to use free applications on their phone or mobile device. Most people have their phone with them at all times, and they can program these as medication reminders, too. These applications are available from the Epilepsy Foundation and Epilepsy Action.

Applications also can include data from seizure alarms, which many patients use to alert caregivers or health professionals about their seizures. These also can help alert you if your child has a seizure at night.

Another seizure diary, called seizure tracker, is available online. Printable paper calendars, such as My Seizure Event Diary and My Monthly Seizure Calendar, also allow patients to choose the type of seizure diary most useful and accessible to them.

When a seizure occurs, you should record as much information as you can in the diary. If your child is in school or daycare, make sure their caregivers also are recording any symptoms.

Other information

A seizure diary should be kept along with an emergency seizure action plan. This is a plan or instructions from your doctor on what to do when your child has a seizure. You should take both the seizure diary and the emergency seizure action plan to your doctors’ appointments. This way, you can update them with information about any changes to medications or new recommendations, if necessary.

 

Last updated: Aug. 26, 2020

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AADC 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 healthcare providers 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.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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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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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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