Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Childhood Absesnce Epilepsy

Wed, 12/04/2019 - 02:49
My 8 year old daughter was diagnosed with CAE in August this year after having a grand mal seizure at school. She had an EEG done which revealed the diagnosis. She was immediately put on Sodium Valporate which she takes twice daily. She has been doing really well save for the weight she has gained and we are trying to manage it. She struggles with school her teacher says she has trouble concentrating could this have anything to do with the epilepsy or medication? I on the other hand am not doing well I'm struggling to come to terms with her diagnosis and I'm so afraid for her. How long does it take to come to terms with this. Also she had a grand mal and was diagnosed with CAE does this mean she had both types.

Comments

Hi, Thank you for posting, we

Submitted by Anonymous on Wed, 2019-12-04 - 10:00
Hi, Thank you for posting, we understand this must be very upsetting and scary for you all to experience. Her difficulty with concentration could be related to several things from seizures, her epilepsy, or a separate issue. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. To more about the effects of epilepsy and seizure medicines on cognition, visit:  https://www.epilepsy.com/learn/challenges-epilepsy It’s important that you all continue follow-up with your daughter's healthcare team to address these challenges and to express your concerns with her healthcare team. It’s also important to review with her doctors if she experiences any changes in side effects, seizure types/ frequency, behaviors and symptoms, to determine what individual treatment is best for her. If you have not already, you may want to consider having her see an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety, & find self-management tools. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyFor more information about CAE, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/childhood-absence-epilepsyAdditionally, you may want to consider keeping a journal, or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking her seizures, setting reminders, recording medical history, medications, side effects, moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. It’s common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  It can be helpful to connect with other parents who may have similar experiences, to ask questions, find &give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Or contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline  

By clicking on the LEARN icon

Submitted by irangel on Thu, 2020-01-09 - 10:06
By clicking on the LEARN icon above, then click on Type of Seizures, you'll learn that Absence Epilepsy is also known as Petit Mal seizures, this being the older term, which is essential similar to a Grand Mal seizure, the only difference is that during a Petit Mal you don't loose consciousness.At the age of 1-1/2 years old, I had 2 Grand Mal events.  Took medication for very short time, then at the age of 10, I had another Grand Mal.  Took medication for very short time and then starting having Petit Mal events monthly until I was 16 years old.  During this time I took no meds.At the age of 17 years old, I reduced my Calcium intake by no longer drinking milk and I've been free of Grand/Petit seizures ever since.  You'll find various articles/studies on the internet whereby Calcium and Calcium Carbonate have shown to trigger seizures for some, not all.Throughout my adulthood (FYI - I'm in my mid-50s), I've had very close calls, each time (after doing a lot of research and with the help of my husband) I had unknowingly exposed myself to Calcium Carbonate in non-food items:  Mortar Mix, Cat Litter, Latex Paint, Latex/Nitrile/Vinyl Gloves.   The only common thread between all these items is Calcium Carbonate and, the good thing, it only triggers the milder form of Myoclonic seizures.Last month I was in the hospital in an EMU (Epilepsy Monitoring Unit) for 5 days to prove to my neurologist that I had a high sensitivity to Calcium Carbonate by simply placing 1/2 tsp of  powered Calcium Carbonate (60% of daily value) on the palms of my hands with a few drops of water to make it into a paste.  Sure enough, that very night I had 3-4 hours on Myoclonic seizures.  The 2 previous nights before the powder Calcium Carbonate experiment, I wore Nitrile Gloves for 8-10 hours each day.  The gloves alone also triggered the Myoclonic seizures.  I did this because my employer wants me to wear gloves for 10 hrs each day and I had to prove my hyper sensitivity since this now a Worker's Compensation case.Calcium Carbonate is found in many foods.  Example: Sparkling Mineral Water which is Carbonated water with Calcium.   Another example, this one triggered a Myoclonic seizure, I was cooking a cheeseburger for myself and accidentally charred the meat.  Cheese = Calcium and Charred = Carbon.  Charcoal is another word for Carbon.  During this Myoclonic seizure event, I took 1 Magnesium pill to counter the Calcium....which resolved the problem for about 2 hours, thereafter, the Myoclonic event was by far less eventful and I was able to fall asleep.You maybe interested in checking out the Keto Diet for your daughter because it's high on fat and low on Carbs.   The human body naturally converts Carbs into the lowest form of Carbon.  Yes, it does get complex.I'm still not taking any AEDs for my Epilepsy, nor any other daily meds.  My only concern, being in my mid-50s, is that my body is craving Calcium at times to counter my Osteoporosis so I do my best to limit my Carbs intake to the extreme when I eat food rich in Calcium.  I had read somewhere that taking 2 Calcium pills along with 1 Magnesium pill helps the absorption of Calcium into the bones....which does somewhat contradicts what I mentioned earlier regarding Calcium and Magnesium.  Vitamin D also helps with the absorption.Good luck!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.