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My daughter newly diagnosed with Epilepsy

Hi, I'm new to this forum. I am very happy to find a place where I can read your stories and feeling related as well as supported. My daughter is 9 and was diagnosed with Epilepsy last week after a whole year with unexplained fainting episodes. I am struggling how to cope with this new condition. I feel hugely anxious when she is at school. My head feels tingling when I imagine she has her episode at school. My heart pounding when my phone rings. I don't want to go anywhere because I 'm afraid it would happen. I don't want to talk to anyone because I don't think people can understand. I know that I have to stay strong and healthy so that I can take care of her, but I am really really exhausted.

Comments

So I hear you mom. Anxiety

So I hear you mom. Anxiety etc are real and the brain does have a way of making us lean more towards the "what can go wrong side" so I hear you. What helps is to first try to contextualize the entire situation. Key word is "helps" not solves. With parents nothing really solves certain concerns they may have. I was told that by my mom and by my sister, both mothers.What really made it easier for my mom is the fact that she was in medicine so she also looked at the diagnosis from that perspective. The fact is Epilepsy is a neurological condition. What makes it so scary to many is that they may not fully understand how the brain works. I thought I could find myself being anxious but it happed under another circumstance. So, yes, the way you are feeling is not something anyone will question.Look at it this way. Let's say you were the one who was diagnosed with Epilepsy. Ask yourself what would be helpful to you and what would not be helpful to you. While it's natural to be concerned, would you at least want to know that, say, your husband and your kids are concerned but not overwhelmingly worried about you? Would you want to know that they are so overwhelmed that they feel the need to restrict you in many everyday things that might not be such an issue for you to take on? I guess what I am trying to say is, and again, I am not questioning your anxiety. I had it under a different circumstance and it was overwhelming. It wasn't something anyone could tell me I shouldn't feel. But what helped was speaking with my neurologist who referred me to someone who was able to guide me in terms of how to best handle the situation. I underwent neurosurgery. One of the things he told me post surgery was very helpful to my recovery. He said; "My job (the surgery) was easy." He then went on to say; "Your job (recovery) will be a bigger challenge, one that will require patience and limited guessing."  When he said that to me it was easy for me to follow because to me his job was one that required more patience. I say that because he kept me updated everyday pre and post surgery about what we were going to do. No guessing game.When the initial language mapping give results but three weren't very conclusive given how close language and speech was to those areas, he suggested that we repeat it during the surgery. Because he was so consistent and disciplined as a neurosurgeon who connected with his patients, and because I am into Math, I told him; "Let's do it. Let's repeat the language mapping during surgery."Because we did that, which in essence is me answering questions during the actual surgery, we were able to remove 2.5 of the 3 areas that looked unsafe to remove. Those areas and the ones that did pass the test for surgery.Mom, it won't be easy. But what helps is reminding yourself that your daughter is still as important and still as smart as she has always been. Her diagnosis, while it's not preferred by any of us who have it, nor by our parents who have to watch us take on this challenge, is now there. The question is; "Are we looking at the entire picture or are we just seeing the diagnosis."If you are in the United States I will give you the link to hospitals who are pretty good in neurology and neurosurgery. Not suggesting surgery. Just that this is how the define the area. Because she is 9 I will first give you the pediatric neurology link then the adult.The pediatric is: https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-an... adult is: https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosur... will be a journey mom. But just remember to keep your eyes on what you are hoping to accomplish, and that is finding a neurological team who will suggest the appropriate tests and suggest medical options.  Also, because neurology has advanced significantly, well, the medicines on the market are wider, meaning you have many options to try just in case one doesn't work that good or your daughter sort of doesn't respond to it well. As someone who has Epilepsy my biggest strength came from my mother, my grandmother, and my grandfather who were all in medicine. They never made me feel like I was running out of options or that I should see myself any different that anyone else. As Dr. Orrin Devinsky, who is in charged of neurology at NYU Langone told the NY Times; Epilepsy is just another neurological condition. Mom, it will take time for you to adjust but I will leave you with the words of my neurosurgeon post surgery; "It won't be really easy. It will require a lot of patience." I held on to his words when I had to undergo Speech Therapy etc post surgery. Just focus more on what you have to do to make it better for your daughter. That is something that will require a lot of patience mom. But we are here for you. Best Regards

It's not unusual for a parent

It's not unusual for a parent to have issues that need some help, but if that's you then you need to see an appropriate therapist. Living your life in fear can have a negative impact on your child if you restrict their options (epilepsy can cause a lot of fear, it's already a stigmatizing diagnosis and adding to that is a burden for your kid). It's going to take some time to get the hang of this new normal so be willing to cut yourself some slack. Just do so with the intent that your child will not be restricted such that it alters your child's normal/healthy development. You can learn about your child's seizures and reasonable restrictions by asking your child's neurologist, getting the clinic notes may help you formulate new questions or look up terms on the internet.

I am a mom and also have

I am a mom and also have epilepsy. I totally understand mom guilt and your feel your pain and anxiety about your daughter. I know it's very hard for you, but the one thing my parents did for me, was to act like I wasn't any different than anyone else. Obviously I was, and there were special precautions they took for me (no late nights, lower stress levels..etc) Something that helps is a medical ID bracelet or necklace, that way you know someone can easily get your contact information. Extra medicine on hand at her school and an action plan so everyone around her is on the same page. And lots of cuddles :) You're doing great mama, she's lucky to have you!

I agree with Erin, below.

I agree with Erin, below. Although I’m not the one with a child who has epilepsy, I had siezures for forty years. My parents did what they could, when I was at home. As for time away, they saw to it that those in charge - extended family, school officials, teachers, etc. - knew of them and what to do. The one thing to me, that meant more than anything else, is having my family around me in addition to friends that stuck by. As for preventive measures, each of us is different. The physicians tried sleep habits (more sleep @ night), diet modifications, etc., and none proved effective. Much of it may come down to what the neurologists determine to be the cause of your son’s seizures. From there, they may have suggestions.I wish you and your son well.

Make sure her teachers know

Make sure her teachers know she has epilepsy, and that they know what to do in the event of one. In school, I my parents and learning specialst always aranged for me to sit closet to the teacher’s desk. She, or a school counselor may have to explain it to the class. I was shy about sharing my epilipsy with classmates until I did an english class speech about it in 9th grade. I’ve been comfortable talking about it since then. In 5th and 6th grade, I did go through a period in whcih I did have seziures while in school. Usually lasted less than a minute. Went to the nurses office to rest afterwards. Did have to talk to my high school teachers myself about my epliepsy and what to do if I had a seziure. During our swim unit in high school gym, we were all partnered up, and my teacher explained my epilepsy to my partner. He always made sure to ask me how I was feeling.  The more that people understand your daughter’s condition and what to do in the case of a sezure, the better.

Thank you! We informed the

Thank you! We informed the school and her teachers about her condition, I also requested that she has a buddy every time she goes to washroom. She was very upset about it but we tried to explain that it was just for her safety. She is having hard time to accept it but hopefully 1 day she will understand. It is amazing that you did a speech in your 9th grade about epilepsy. It's the right thing to do to raise awareness about epilepsy.

Thank you! We informed the

Thank you! We informed the school and her teachers about her condition, I also requested that she has a buddy every time she goes to washroom. She was very upset about it but we tried to explain that it was just for her safety. She is having hard time to accept it but hopefully 1 day she will understand. It is amazing that you did a speech in your 9th grade about epilepsy. It's the right thing to do to raise awareness about epilepsy.

Thank you for your input. I

Thank you for your input. I appreciate your time and your thought. Reading the replies from every one really help to calm me down. She has been on Lamictal for 10 days and will increase the doses in 4 days, and another increase in next 2 weeks. We are awaiting for MRI appointment and a second EEG (the first EEG showed normal). With lots of respect for you who stay strong and optimist. We had promised her years ago before this diagnose to take her to Amusement Park. Now I feel anxious and not sure how to talk her out of it, worrying if the rides might trigger the seizures. Can you share your experiences? Sincerely,

Thank you! We informed the

Thank you! We informed the school and her teachers about her condition, I also requested that she has a buddy every time she goes to washroom. She was very upset about it but we tried to explain that it was just for her safety. She is having hard time to accept it but hopefully 1 day she will understand. It is amazing that you did a speech in your 9th grade about epilepsy. It's the right thing to do to raise awareness about epilepsy.

Thank you for your input. I

Thank you for your input. I appreciate your time and your thought. Reading the replies from every one really help to calm me down. She has been on Lamictal for 10 days and will increase the doses in 4 days, and another increase in next 2 weeks. We are awaiting for MRI appointment and a second EEG (the first EEG showed normal). With lots of respect for you who stay strong and optimist. We had promised her years ago before this diagnose to take her to Amusement Park. Now I feel anxious and not sure how to talk her out of it, worrying if the rides might trigger the seizures. Can you share your experiences? Sincerely,

Thanks Erin! Your words

Thanks Erin! Your words touched me. Lots of cuddles is a great suggestion/ reminder, because sometimes I was too busy asking her about all other things relating to the drug's side effects / episodes that we didn't have enough of cuddles. I even blamed myself that I probably didn't take care of her well enough when she was baby. Because I don't know why epilepsy happens. I will keep your words in mind. Besides, I will get her the bracelet, but I have to convince her to wear it. She tries not to let people know about it, even though both I and her teachers explained about it.  She loves to read and books may help her to understand better. But too bad I haven't found any book about epilepsy. Thanks so much for your time and your supportive words!

Thank you for your input. I

Thank you for your input. I appreciate your time and your thought. Reading the replies from every one really help to calm me down. She has been on Lamictal for 10 days and will increase the doses in 4 days, and another increase in next 2 weeks. We are awaiting for MRI appointment and a second EEG (the first EEG showed normal). With lots of respect for you who stay strong and optimist. We had promised her years ago before this diagnose to take her to Amusement Park. Now I feel anxious and not sure how to talk her out of it, worrying if the rides might trigger the seizures. Can you share your experiences? Sincerely,

Thanks Nigel for sharing your

Thanks Nigel for sharing your experience! It's so fortunate that you and your Neurologist have worked like an amazing team, also your mom is in medicine. She just started the Anti Epiletic drug last week. We are waiting for the MRI and a second EEG appointment. We can't wait to know more details about her Epilepsy. For a whole year, she had like mini black out every month, then nothing in summer months, then again in Sep, Dec and a grand mal in Feb which the Neurologist prescribe the drug. We will go to Cuba for vacation and I am very worried how to prepare for it. For the last week, I was extremely stressed, but now getting better after reading every words from all of you. It means a lot. Thank you again! 

Thank you! We informed the

Thank you! We informed the school and her teachers about her condition, I also requested that she has a buddy every time she goes to washroom. She was very upset about it but we tried to explain that it was just for her safety. She is having hard time to accept it but hopefully 1 day she will understand. It is amazing that you did a speech in your 9th grade about epilepsy. It's the right thing to do to raise awareness about epilepsy.

Thanks Erin! Your words

Thanks Erin! Your words touched me. Lots of cuddles is a great suggestion/ reminder, because sometimes I was too busy asking her about all other things relating to the drug's side effects / episodes that we didn't have enough of cuddles. I even blamed myself that I probably didn't take care of her well enough when she was baby. Because I don't know why epilepsy happens. I will keep your words in mind. Besides, I will get her the bracelet, but I have to convince her to wear it. She tries not to let people know about it, even though both I and her teachers explained about it.  She loves to read and books may help her to understand better. But too bad I haven't found any book about epilepsy. Thanks so much for your time and your supportive words!

    I went through a period

    I went through a period in high school in which I did have an unusuall number of seziure in a short time span. My parents arranged with the special ed department to have a par-pro “shadow me” around school for a few days. It did feel embarassing, feeling like you have somebody always looking over your shoulder, watching your every move, like you have no privacy. The para-pros did do their best to give me as much distance as possible and stay confidential. Most of the time, other students didn’t know or realaize who they were or why they what they were doing in our classroom. Everything worked out and after a few seziure free days, I was able to walk around school alone again.      It may feel embarassing for you and your daughter, but if nobody knows or understands her situation, people won’t know how to help her, and you’ll both find times when you’ll need to ask other for help.           This is NOT something you can handle alone. I was fourtinite growing up , when my sezizure were at their worst, to have a strong support group of family and church friends who helped cooked for my family, and baby sit my brother while my parents took care of me. I still can’t drive since my Epilepsy is uncontrolled, so I have to tell people at some point , so people know that I will always be in need of somebody willing to drive me. Certian foods will trigger my seziures, so I have to let people know what I can’t eat. For Christmas I recieved a lot of cholates, which unfourtuntley is one of my trigger foods. When I’ve job searched in the past, I have to explain to my case workers that any driving-related job is out of the question, and work must be accessiable my transportation. It probaly feels embarassing for your daughter to go from who she is to “the girl with seziures”. You don’t have to tell the whole world about it. Only my manager at work of 30 some plus people knows about my epilepsy. But there are going to be times that you will have to tell SOMEBODY so they know how they can help.

I was feeling extremely

I was feeling extremely worried and scared, I couldn't help it. However, after reading replies from you guys, I am getting little better. I take your words, it is now a "new normal". It is quite a comfort to see her going through her day with school, homeworks, friends, piano lesson, car rides,..... without issue. Now, I just love to hear her foot steps around the house so much. Hearing her singing in the washroom is a pure joy for me. I am trying to figure out the triggers, I feel like hypervetilation is the one, because most of the seizures happened when she was rushing or changing position quick (from sitting to standing up). We might do yoga class together to help her regulate her breaths. What do you think? Thanks alot for your reply and your advice means so much!

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