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I'm not sure what to do! I need advice.

Fri, 08/17/2018 - 13:16
Hello, my name is Jenevie and I am a 19 y/o in college. My sister Lily who is 17 has had absent seizures up until 8/16/18 since she was 11. She started public school for the first time in 3 years yesterday and when she got home, she ended up having 2 grand mal seizures while she spoke to me about her day. I witnessed her absent seizures and I was able to cope. But now seeing the grand mal, honestly I am scared and worried. She was holding her hand up and looking around and kept saying she was scared. She fell over and I caught her because I didn't want her to hit her head. She started seizing, her body was shaking and a little spit and blood came out of her mouth. I turned her on her side so she wouldn't choke. I was on the phone with my parents and 911, I didn't know what to do. When she got diagnosed, I was there for her and did everything I could do. My family is not supportive at all besides taking her to her appointments to get her medication. I am positive she became depressed and still is. She cut herself a few times and tells me the only reason she is here is because of me. I'm her only happiness. She copes with everything for me and I would do anything for her. I'm crying while typing this because she is my best friend and I am so hurt. I can't function. She stopped taking all her medication because of all the side effects and has been using marijuana to cope. It helped for awhile but since the grand mal yesterday, I really want her to try something else. The firefighters that responded yesterday spoke to me about CBD Oil and I am taking that into consideration. We are seeing her neurologist today and since I am not her guardian, I'm not sure what to say. My parents do not know her as well as I do, so I would prefer to be there. I do not want to treat her any different because that is what she told me. She wants to be normal but feels like she can't. I've never reached out for help like this but I really do need opinions or to read experiences about what to do. I want to help her get better and I am so overwhelmed. I've been crying nonstop and I can't focus. I'm so worried that I even slept in her bed to make sure she was okay. I've considered dropping out of school to be with her because she is more important. I would like to involve her in support groups as well. Thank you so much for reading.

Comments

sorry, i mean absence seizure

Submitted by jeneviechan on Fri, 2018-08-17 - 13:17
sorry, i mean absence seizure*

Sorry to see thisYou do need

Submitted by just_joe on Sat, 2018-08-18 - 14:53
Sorry to see thisYou do need to be in that visit since you saw the seizure that was bad.If she ws taking meds and she stopped taking them then the reason she had the convulsive one is because the therapeutic levels have left her body. MJ calms down the central nervious system which is why that helped some. The CBD oil is still being looked at but it has passed in many states for people with epilepsy.  She can be normal and is. The only thing she has that is different is a seizure disorder. A handicap. She goes to school with all kinds of people with handicaps. Glasses, hearing aids, diabetes, wheelchairs. heart conditions. They are all handicaps. Ahe does need to take her meds as prescribed. 2 times a day means taken as close to 12 hours apart. Research triggers in the learn section. You need to gt your parents to research that section too since people with epilepsy can do almost everything others can do. The only thing I have not done in the 50+ years I have had epilepsy is DRIVE. You name it and I have done it.If this is her neurologist then try and keep  good relationship with them. I did with mine and we made changes to medications and dosages in phone calls with  visit to follow after a few months.When she starts her medications then please research the side effects. Generally they go away after her body gets used to the medication and the therapeutic levels have been reached.I hope this helps and she gets the assistance she needs.Joe

Hi Jenevie:I can see how this

Submitted by Jazz101 on Wed, 2018-08-22 - 18:17
Hi Jenevie:I can see how this can be really challenging on your side, but there are a few things you should know. For beginners, your sister's diagnosis is just that, a diagnosis. It's not about her being unlucky and you being lucky. As a result, if you are, and probability tells me you are; if you are feeling guilty that she has Epilepsy and you don't, then you aren't helping either of you. I say that because like you I only have one sibling. And given I am the one who has Epilepsy, I would hate to know my sister, whom I care a lot about, is feeling the way you are. I say that because your feeling has to be more of a challenge to you than Epilepsy is to the individual with Epilepsy. After all, Epilepsy is a medical diagnosis no one gladly seeks on their own. But unnecessary guilt is something many of us can, without realizing it, seek out on our own. Epilepsy is real, nothing I or anyone else with Epilepsy make up, or inflict on ourselves. On your side, however, your feeling has to be more a challenge because you are the one who, understandable, is being really tough on yourself. Just as you would want your sister to not have Epilepsy I am sure your sister would hate to know that her diagnosis is really eating away at you. That would make Epilepsy more of a challenge for her. I guess what I am trying to say is just as you would want your sister to be healthy, she would also want to know that you are not increasing the chances of unnecessary declines in your health.  And that's because she cares for you as much as you care for her.So what would I do had I found myself in your shoes? I would pause for a few seconds and try to figure out what is best for both of us--you and your sister. And, as someone diagnosed with Epilepsy, I can tell you I would want to know that both of us are not increasing the chances of any further decline in our health.Epilepsy now has multiple medical options in terms of reducing/controlling seizures. In my case, when medication alone wasn't enough, I went after surgery. Surgery was not to tell myself that the seizures will be gone for life. No. Surgery was to minimize seizures and the side effects of too much medication. For individuals who might not be candidates for surgery, there are things like the VNS and the RNS. If I had to choose I would go after the RNS. To find out more about things like surgery, VNS, and RNS, my advice is to find a hospital with good neurological ratings. My source was US News and World Report.  Here is the link. https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgerySiblings are usually the closest form of first hand person to person early experience. As a result I can totally understand how your sister's diagnosis can be really affecting you. I can't be easy. But what is most important is making sure you are both able to maintain your health etc. to the best of your ability. Your sister cares as much about you as you do for her. Hence, I doubt she would want to know that her diagnosis is just eating away at your ability to move forward. That said, I totally understand how you have to feel. After all, I also have a sister and I can see how my diagnosis affected her. Luckily, I was able to play more of a role in seeking out good neurologists, neurologists who dealt with Epilepsy. Try to find a hospital with what the call a "Comprehensive Epilepsy Center." That's always the best start.

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