My daughter newly diagnosed with Epilepsy

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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

Submitted by Jazz101 on Tue, 2019-02-12 - 20:07

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-and-neurosurgeryThe adult is: https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt 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

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-and-neurosurgeryThe adult is: https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt 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

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-and-neurosurgeryThe adult is: https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt 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

Submitted by Amy Jo on Wed, 2019-02-13 - 15:47

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

Submitted by emonaco1113 on Wed, 2019-02-13 - 17:13

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!