newtome

[Jamie]

Hi there,
My name is Jamie. I have been suffering w/seziures since I've had my second child. It's been going on for about 6 1/2 years now. Both of my kids have seen me have seziures,they think they have "watched mommy die." The hardest part is not being able to protect them from seeing me in that state. My son is 10, he knows what to expect,cant say you EVER get use to anticipating the worst, but he is so compassionate and caring and unfortunately that has to be on his mind. I was diagnoised w/ a mass in my brain on the right side,no one can tell me much more because I have no insurance to preform the correct testing. I have chronic migraines that have me bedridden and useless atleast twice a month. Thank you for listening to my problems.

 

[epileric]

Welcome Jamie

I was also diagnosed with a lesion on my brain. Of all places it's on the hypothalamus which is in the centre of the brain.

I can only imagine what you've gone through with your kids. Personally I think despite scaring them the first time(s) they see you I think an experience like that as a child will encourage them to grow up to be very caring and empathetic individuals.

Make yourself at home and check out all that we've got here on this site. I'm sure others will be by soon to say "hi" and welcome you.

 

[Nakamova]

Hi Jamie, welcome to CWE!

I'm sorry you've been struggling with the seizures and migraines. And it's terrible that you can't get insurance to cover testing to help with a diagnosis. Depending on where you are located, there may be ways you can get help with affording your medical care and medications.

I agree with Eric about your children. No doubt there is stress involved in their seeing you have seizures, but kids are amazingly resilient, and can adapt to all sorts of family circumstances (sometimes even better than adults do).

I hope you are able to get some relief soon.

Best,
Nakamova

 

[Jamie]

warm welcome

Thank you for warm welcome! I would also like to thank "RAE 1889" for the link on facebook. It's nice to know that I'm not alone and not the only one dealing with this rollercoaster. I am not real computer literate,so I'm looking forward to figuring this out and makingfriends. Hope you all have a wonderful day!

 

[Endless]

Jaime,

Welcome to the forum!

I'm so sorry for everything you and your children are going through. It is hard on kids for awhile until they get used to it, and hard for them to understand. The more they know and understand, the less frightened they will be.

There are some great books out there on epilepsy written just for kids. Look in the libary here in the forum for some recommendations, and also look on Amazon.com. There's a ton of them. Google is also useful.

There are members in here who have found their children to be amazing ambassadors for epilepsy. They have done show and tells at their schools, presentations to other classrooms, etc. They are not only unafraid, but have become excellent educators and public speakers. And this is all ages - little ones to high-schoolers. Your children are becoming even more unique and amazing people through sharing your experiences.

 

[Cint]

Hi Jamie,

I've had epilepsy now for 30 years and also have two children (now grown), so they've seen me have CP and TC seizures throughout their childhood. At times, they thought their "mommy" was going to die when they witnessed those god awful seizures. Their father was gone a lot, so they did take help me out a lot. But now that they are both in their late 20's, they've learned to deal with others in public when they witness seizures.

Like Nakamova and Eric said, kids will become very resilient, sometimes more so than adults.

I do hope you're able to get some insurance so you can have the proper testing done soon. Have you checked with the local epilepsy foundation?

 

[Jamie]

Thank you for your posting. I am involved with the local Epilepsy Foundation,they have been such a blessing with helping me with my medications and their support groups they offer. Just like most,they too are experiencing major buget cuts. What they once could help with is no longer fesiable for the amount of clients they now have. So we have alot of fundraisers and "walks." I am forever indebted to my over worked wonderful case worker Ericka. I look forward to getting to know you better. Thanks again for listening!