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First Seizure at 12 on Feb 11th 2020

Wed, 04/15/2020 - 13:43
Hello All, I'm father of a 12 year old, my daughter got her first seizure on Feb 11th, we got EEG and MRI done. MRI was normal but EEG was Abnormal. Then she got her second seizure on Mar 28th then the doctor put her on Trileptal, she is currently on 9ml dose. Both time she would Stare for couple minutes and then end up in grand mal. As a parent we are always on the edge, She coughs or scream for anything, just doing what 12 year olds do, we get moving asking her what happened, are you ok etc. I'm always scared of the thought of going through another grand mal, I'm here to understand how everybody else is dealing with it,


Hi,Thank you for posting and

Submitted by Anonymous on Thu, 2020-04-16 - 08:27
Hi,Thank you for posting and we understand your concerns. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here:  . You all may want to consider keeping a journal or a diary to help keep track of her seizures, medications, and more by using a diary or a journal. My Seizure Diary, can be used to organize her health issues,manage medications, develop seizure response plans, and more, which can be share with her healthcare team: . It’s important that you’re continuing to express your concerns regarding your daughter's seizure frequency with her healthcare team, who can help determine what individual treatment plan is best for her. Be open and honest about how you all are feeling, and how this is affecting her health and daily life. .  Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask her doctor’s if you can schedule a time to talk via phone/ other telemedicine resources you can utilize, or if they can make any additional recommendations for her. It’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. parent is different in how they cope with their child's epilepsy. It is important to find someone you trust to talk about your concerns and worries. . Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: . Additionally,you may always 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,  , or contact your local Epilepsy Foundation:

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Sat, 2020-04-18 - 01:27
Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I remember how terrified my mother was even though I was 19 when I first started having seizures and as a mother, I can imagine how terrified I would be if my son were to start having seizures too.  ConnectHelp has already offered some great resources from the website and I certainly don’t want to overwhelm you with more, but perhaps you may feel more safe if you learned some seizure first aid and maybe even shared the Epilepsy Foundation’s upcoming Seizure Safe Schools Webinars with her school.’s no way to know if the medication is going to work right away or if the dosage is the right amount yet. The majority of people who have epilepsy are able to have control of their seizures with medication, but for some of us, we require more specialized treatments and some of us do not ever have full seizure control. I don’t say this to frighten you, but just to say that if you reach a point where they have tried two medications or one year with treatment and she is still having seizures, then it’s time to seek more specialized care through an epilepsy specialist also known as an epileptologist usually available through an epilepsy center. In the meantime, learn some seizure first aid, follow the recommendations that ConnectHelp offered and what the doctor recommends. She may also have other seizures that she’s not aware of such as auditory, tactile, gustatory, visual, or deja vu especially as the medication starts to work because it may control the generalized seizures that you observed, but she may experience the focal seizures and maintain awareness and not know what to call them. You may find it helpful to read about the different types of seizures, also available on this website. 

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