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Thread: single parent of child with intractable epilepsy

  1. #1

    Default single parent of child with intractable epilepsy

    Where does a single parent find helpful resources?...It is increasingly difficult to care for my 12 yr epileptic daughter and keep a full-time job. Can't afford the (unqualified) babysitter and I can't afford to be without a job. Any suggestions and/or advice would be appreciated.

  2. #2
    Distinguished Community Member
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    Hi mara's mom,

    Welcome to the forum! I was having sz. when I was your daughters age and it was hard for my parents also. I finally went to an Epilepsy Center which are usually at university or large hospitals and I saw an Epileptologist (Dr. speacializing in epilepsy)
    This was the best thing I did because I was taken off a lot of my meds and put on the ketogenic diet which helped reduce my sz. greatly, years later I had brain surgery that helped me even more. My advice to you is to speak with your daughters Dr. or neuro
    and have them refer your daugther to an Epileptologist to help your daughter and you. Also you can call the Epilepsy Foundation of America which is located in Maryland and they can help you out and give you good advice all for free. Here's their phone
    number if you would like to call. 1-800-332-1000. I wish you and your daughter only the best of luck and May God Bless You Both!

    Sue

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((mara'smom))))))

    Welcome to Braintalk!

    I empathize with you, as I recall how difficult it was to find after school care for my boys, when I worked full time. We were fortunate to have a special needs after school day care. But they closed during holidays, and finding an alternative was a real challenge.

    Is your daughter in school? If so, does she have an IEP, and does she have a one-on-one aide? The reason why I ask is because schools/school districts often have resource people, who can assist in finding after school care for special needs children.

    Do you live near a university with a hospital? Perhaps some starving medical student would like to earn a few dollars and learn a lot about epilepsy by providing your daughter's care. Or a nursing student.

    You might try checking with your county social services agency to find out what kinds of programs they offer. If they can't help you, they might lead you to a resource.

    If your state offers In Home Supportive Services, and your daughter qualifies, you might be able to find a careprovider through that program. It is a federal program, offered by the states, and run by the counties. Funding comes from all 3 levels of government for the services.

    Are there any advocacy groups for children/adults with disabilities in your area? Contact them. Is there an epilepsy foundation in your area? Contact them.

    Does your hospital have a social worker? That person might have access to many kinds of resources.

    Tell your daughter's physicians, their staff, her teachers, the principal, everyone you can think of, that you need help finding qualified, affordable child care for your daughter. Word of mouth is the best form of advertisement. One of them might need a second job, or they might know just the right person for you.

    You might also try assorted Google searches for your area, using terms like "special needs day care," "epilepsy child care," "resources for children with epilepsy," etc. (The internet ~ something that I wish I'd had 30 years ago!)

    Those are all of the thoughts I have currently, but if I think of anything else, I'll repost.

    Also, I would like to invite you to join us on the Child Neurology forum. Many parents there have a great deal of experience with seizures. They might not notice your post in this forum, so please come on over to Child Neuro, and introduce yourself and your daughter.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 09-04-2012 at 04:53 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #4

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    Have you contacted the Charlie Foundation? They have helped a lot of kids reduce and/or sometimes eliminate their seizures with the use of the ketogenic diet. These were kids who were having lots of seizures! Good luck!
    mercy

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