I am new to this but I thought I would give it a shot. My daughter was diagnosed with epilepsy at age 14, she is now 20. They seem to be controlled until she stopped taking her meds. She lives with grandma since N.H. has better state insurance than CA. I don't know how to help and I don't want her to stop living and dreaming. I feel she is capable of working and could possibly overcome her disorder, I have known people who have but mostly I want to help.
new to site, looking to help daughter, gain understanding for myself as well
- Thread starter tylerlutz
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Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
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Hi Tyler, welcome to CWE!
This is a great site. The members have all kinds of experiences with seizure disorders -- not only people coping with them, but parents and other caregivers as well. I hope you feel free to explore the different forums and post questions or vent as needed.
Why did your daughter stop taking her meds? Was it because of side effects or frustration? If so, she should know that there are other meds out there to try, as well as approaches such as neurofeedback and/or nutritional changes that might help too. Also worth thinking about is that if she's having uncontrolled seizures, there is the risk of them escalating, and getting more frequent and/or intense. Is she open to finding treatment?
Best,
Nakamova
This is a great site. The members have all kinds of experiences with seizure disorders -- not only people coping with them, but parents and other caregivers as well. I hope you feel free to explore the different forums and post questions or vent as needed.
Why did your daughter stop taking her meds? Was it because of side effects or frustration? If so, she should know that there are other meds out there to try, as well as approaches such as neurofeedback and/or nutritional changes that might help too. Also worth thinking about is that if she's having uncontrolled seizures, there is the risk of them escalating, and getting more frequent and/or intense. Is she open to finding treatment?
Best,
Nakamova
Thank you. She has been living with my mom for the last few years. I am on my own and it was hard to help her and she'd hide her meds so I would think she was taking them. Her seizures were frequent and I felt like I was making things worse for her. There's so much to say however, this website is very confusing to navigate for me. I just sent a link to my daughter via facebook in hopes that she could connect with others to help her but I don't know if she will or not.
I don't why she stopped taking them, she doesn"t communicate these things to me. She was doing so well and hadn't had a grand mal in almost 2 yrs. She does have petite mal's as well. My mom does all the work for her but I'm wondering if that isn't the best solution. How do I help Melinda, my daughter become proactive for her own life and not be defeated by this. She is a gifted artist and writer, how do I help her? I feel so bad for her but surely she can live a normal life somehow too. I think that if she reaches to others going thru similar experiences, she could really benefit so much!
My mom wants her to be on SSI cause she feels that Melinda can't ever live a normal life. But I know people who either have seizures or know someone with them and they function pretty well. The meds have controlled them as long as she takes them. Are there other options? Is there a possibility that she could grow out of them which happened to a lady I know?
I don't why she stopped taking them, she doesn"t communicate these things to me. She was doing so well and hadn't had a grand mal in almost 2 yrs. She does have petite mal's as well. My mom does all the work for her but I'm wondering if that isn't the best solution. How do I help Melinda, my daughter become proactive for her own life and not be defeated by this. She is a gifted artist and writer, how do I help her? I feel so bad for her but surely she can live a normal life somehow too. I think that if she reaches to others going thru similar experiences, she could really benefit so much!
My mom wants her to be on SSI cause she feels that Melinda can't ever live a normal life. But I know people who either have seizures or know someone with them and they function pretty well. The meds have controlled them as long as she takes them. Are there other options? Is there a possibility that she could grow out of them which happened to a lady I know?
RobinN
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My daughter began having seizures at the age of 14. She is now 18 and we seem to be controlling her seizures pretty well by making nutritional changes. We tried meds and the quality of Rebecca's life spiraled out of control. I can understand why your daughter does not want to be on meds. We decided that the few seizures were worth putting up with, instead of the constant daily side effects.
I do hope your daughter considers your suggestion to check out our forum. I am sure she would find support here. I understand your frustration with not being able to help her. It has taken some time for my daughter to understand the direction I have taken with her care. Luckily I think I caught her in time. She is being much more careful with her nutritional choices.
I do hope your daughter considers your suggestion to check out our forum. I am sure she would find support here. I understand your frustration with not being able to help her. It has taken some time for my daughter to understand the direction I have taken with her care. Luckily I think I caught her in time. She is being much more careful with her nutritional choices.
RobinN
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I know you are having difficulty with the fact that you are not able to "fix" your baby girl. It isn't easy. My husband also just wants to find the right "med" that will make life return to normal for her. Luckily I have been keeping great monthly logs to show what has occurred and what we are doing to show that my current path is actually improving her health. Not a quick fix, but it is showing it might be a life long fix.
For me, having my daughter med free was part of the process to witness what was working to find health again. Finding vitamins and minerals that support brain and body health have also been important. As I was learning about this approach we also researched neurofeedback. It is part of the reason I think we have seen such improvement. However, I know we wouldn't have seen such improvement if the nutritional approach hadn't been introduced prior to starting NFB. It can be helpful in stopping the kindling that can occur with seizures. Once the brain learns how to seize it will continue firing in that day when the threshold is lowered. Learning ways to raise the threshold is what is important.
One thing that helped me to understand Rebecca's situation was to learn that seizures are only the symptom. Epilepsy only means that there have been two or more seizures.
Hormones can often be a trigger. That is why symptoms are seen in women often during the early to mid teens, again at pregnancy, and menopause.
We are here for support. There are quite a few of us that are either parents, spouses, or siblings caring about a loved one. If you aren't not able to "help" your daughter, your support for her will be invaluable. You also might learn enough to help a stranger one day.
For me, having my daughter med free was part of the process to witness what was working to find health again. Finding vitamins and minerals that support brain and body health have also been important. As I was learning about this approach we also researched neurofeedback. It is part of the reason I think we have seen such improvement. However, I know we wouldn't have seen such improvement if the nutritional approach hadn't been introduced prior to starting NFB. It can be helpful in stopping the kindling that can occur with seizures. Once the brain learns how to seize it will continue firing in that day when the threshold is lowered. Learning ways to raise the threshold is what is important.
One thing that helped me to understand Rebecca's situation was to learn that seizures are only the symptom. Epilepsy only means that there have been two or more seizures.
Hormones can often be a trigger. That is why symptoms are seen in women often during the early to mid teens, again at pregnancy, and menopause.
We are here for support. There are quite a few of us that are either parents, spouses, or siblings caring about a loved one. If you aren't not able to "help" your daughter, your support for her will be invaluable. You also might learn enough to help a stranger one day.