Mama from Ohio

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babyfish

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Hi!
I have 4 living children. My oldest dd is 16 yrs old, started having seizures at 11 months of age, and my 9 yrs old dd started having seizures at 2 yrs of age.

My 16 yrs dd was seizure free for 3 years while being on meds so the neurologist took her off her meds, within 3 months she began having "starring" episodes and he waited 4 months before placing her back on meds. Since Dec. 2008 she has had upto 30 seizures a day, not counting what she has in her sleep! The meds (Topamax) has cut her seizures down to 10 while awake AND very strange "break through" episodes where she'll scream very loudly, cry and mumble her words.

She's exhausted, moody, in pain, headaches and has had to get medical leave from school so now we have a tutor come 3x week.

I'm soooooooooooooooo frustrasted, tired, scared, and upset that this doctor doesn't seem to care! I don't think he cares because I've waited for 12 days now for him to call me with her latest EEG test results! But most of all, I just want to her to be 16 yrs old and not feel like she's "dieing".

I'm so lost as to what to do, how I can help, where do I find help, what help do I need? Who do I turn too?

When she sleeps she tells me that she feels she on a rollar coaster, and the insides of her body feel like she's falling then she says she "throws her hands in the air" and that makes her wake-up. She says she does that at least 3 x a night and can't fall asleep for a while.

Any suggestions? Any help and/or direction would be greatly appreciated.
 
Welcome to the site

It sounds pretty stressful to be worrying over your kids like that. I guess I was lucky since I was the kid with epilepsy & not the parent.

You did come to the right place, there's a lot of parents here who I'm sure can relate to your situation and are very helpful & supportive. Please accept your complimentary cup of coffee, actually here's some tea instead :cheers:

Have you considered what treatments might compliment using medications. I personally would love to try the neurofeedback but can't afford it yet. It is known to also help headaches, ADHD & lots of other things.http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Meanwhile welcome once more:hello:
 
Thank you so much for welcoming me! You have no idea how great it feels to have found you guys! I don't feel defeated or alone anymore. I feel like I can learn and help my daughter (dd) out now!.

Thank you so much, again! Steph
 
Hi Steph - my daughter began having seizures at the age of 14. I had one doctor telling me they could be mini-strokes. Another saying it was all psychological, and now we might be back at the beginning where it could be due to sugar imbalances.
It will be YOU that figures this out. Do not count on any doctor having the time or the fortitude to figure it out for you. Use them for the testing and to knock ideas around. You are the one living with her, so you need to have knowledge to move forward to find answers.

I had days where I wanted to knock a hole in the wall. I am not violent in any way. I knew I would have to make a doctor's appt, so that prevented me from doing harm to myself. I have screamed and cried, and now have come to a very good place where my daughter is no longer on medication. She is keeping it controlled (to a point) with nutritional changes, supplements for brain health, and neurofeedback.

There is no longer a black cloud over us. She recently was hired as a skating coach and has been choreographing a program for a skater this weekend. Life is looking very good.

You too will get there.
Stick with us, we will give you some tools to support you along the way.
 
Hello Mama from Ohio,
welcome to CWE. I was 2 when my seizures started so I can't imagine what my mama went through.
I myself would find another doctor is here a teaching hospital around were u live?
Find epileptologist that can help you.
The ppl on this board R great very supportive.
Belinda
 
sounds like a dip of a doctor. I would look for another. When my daughter started having seizures, she ended up with a dip so we changed and got a good one. Her son (the neuro's) has disabilities so she was very parent/child oriented. We moved and got another great neuro by dumb luck!! So there are good ones out there that actually look out for your kid and listen to you. I have never felt not listened to by the two good docs.
 
Welcome :hello: I'm also a mom here in Ohio. My 7 year old son was diagnosed with epilepsy in 2007. We've had rounds with several neurologists. It took a lot of time to find a doctor who would listen and work closely with us to find a solution that worked for us. RobinN is right, only you live with your daughter and truly know what is going on. Quite often we have to depend on ourselves more than the doctors. We've been successfully treating my son by restoring health with a combination of proper nutrition and cranial therapy.

Make yourself at home and have a look around. You're definitely not alone. This is a wonderful website full of valuable information, support, and inspiration :)
 
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