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Coping with child's epilepsy

Wed, 02/04/2015 - 23:26

I am hoping for some advice and support. I am really struggling with coping right now. I worry incessantly about my 7yo daughter's seizures, learning problems, and memory issues. On top of all this, it seems she may have an auditory processing disorder. It causes me to be physically ill and to shed many tears.

I worry about if she will be able to live alone, go to college, drive, care for herself, live her dreams. Will the seizures increase? Will the meds keep them away? So far, she only has them when sleeping. Will I miss them? Will she have SUDEP and not be there in the morning? I wake up dozens of times each night to watch the video monitor we have on her. Will she start to have more kinds of seizures? Was that staring episode a seizure? How can I get her to retain information? What am I doing that I shouldn't be doing? Will feeding her only organic food and taking away the chemicals in the house help, or am I wasting my time? Are there supplements/alternatives to use in addition to what I am doing? Am I doing anything that could make them worse? Should I sleep with her? How can I care for her properly and balance caring for my other children? And on and on and on...

It is heartbreaking for me. Her first seizure was 3.5 years ago. I was physically ill for an entire year afterward. I still get bouts of illness because I worry. And, every single day, I can feel the stress hormones coursing through my veins. I have tried every trick in the book, and I am SO very grateful it is not worse. I just cannot bear the thought of losing her or having her suffer. I seem to bear the entire burden of this as my husband does not seem to suffer as I am.

How do you cope? How do you deal with the unknowns? Sometimes I just do not think I can hold up another day. It is so very painful to me. Please help.

 

Comments

I have had epilepsy since the

Submitted by Erica.Gewirtz@gmail.com on Wed, 2015-02-11 - 17:51
I have had epilepsy since the age of 9 and saw how 2 parents handled them very differently operated and the pros and con's of each.My mother, who was my far stronger parent did not want epilepsy to be an unnecessary impediment on my life. She expected me to continue to perform well in school, she got piano lessons for me and expected me to practice and participate in recitals. In other words she was in denial. While these expectations had some positive results such as me taking on physical activity as long as it is safe, it also gave me too high a standard to live up to. This was made manifest when on her behest we moved from Brooklyn NY, where one can easily function without driving to Florida where everyone must drive.My father was the opposite. He was obsessive about it. He did however get me accustomed to taking my medication at the same time for each dose. However he would ask me questions about my seizure, he would become overtly concerned about them, and informed of the possibility of SUDEP before my first date.Before you can help your children you must help yourself. If your daughter is unable to drive, your stressing over it is not going to help. I live alone in Boston where driving is not a necessity. I can't speak of her education from personal experience but as a Special Ed teacher, the more involved you are the better it will be for her. The more you participate in the IDEA process, the more you follow her teacher's advice and provide her teachers with as much info as possible the better her education will go.It is very common for parents to have difficulty balancing the care of typical children with those of a child with a disability. My parents had difficulty and chose the unusual path of favoring my sister. I can't offer advice there since I am not a parent but perhaps there are groups for parents in your position.Your ability to parent your daughter will only be as positive as your outlook. While her disability must be accepted you must set out to see to it that she lives up to all the potential her abilities allow for. Best of luck.

OMG I am in the same position

Submitted by Oliviarose on Sun, 2019-02-17 - 14:36
OMG I am in the same position as what you have Just said my toddler is 3 and half since last two years having seizure and now there changing I'm not coming my husband is calmer in control more than I am I'm ready for a break down having panic attacks and I'm no good when  seizure happen feel a failure to my boy I'm crippled with emotional stress my other children have been left out over this feel so alone and no proper support our there 

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