Never give up!

My daughter got Epilepsy when she was 2 years old and struggled with it for many years trying all kinds of medication on the market. She had Complex Partial Sezures (min 10 - max 30 every day) and generalized Epilepsy (sometimes) and abcence seizures (sometimes) Finally, her doctors decided they wanted to try surgery.

She did all the neurologic testing including Wada testing. Although all the test showed that she was a candidate for surgery, the doctors gave us little hope of big improvement - but still - they wanted to try to give her a better quality of life.

The first surgery, they only prepared and opened her scalp to find that it was not the right spot to operate - what a disappointment!!

The next surgery was 6 months later. The surgeons were optimistic after the surgery, but the seizures came back before leaving the hospital. We were told to be patient, and we were, but no improvement. 10-20 KPS every day - and also a lot during the night. More and more often she also got generalized sezures - and we often couldn`t stop them and had to call an ambulance - It was very hard for all of us.

Then, after another 6 months the surgeons wanted to try one more time - they did, but it was another new big disappointement for all of us - most of all for my daughter.

My husband and I felt helpeless, but wanted to do something that could help our daughter and give her a better life in the future - give her a future. We begged the surgeons for another operation, and after some time, they told us they wanted to give it one last try.

Our daughter had her last surgery in May 2007, and in the months to follow she slowly got better and better - she had her last seizure in June 2009 - can you believe it? We are so happy for her and hope that others will be inspired of our story and never give up!

 


Welcome

Hi Heidi:

I wanted to wish you a warm welcome to the forum.  Thank you for sharing your story.  It sounds like your family and your daughter have been through a lot.  I am inspired by your courage and your strength.  You and your husband have clearly been strong advocates. 

A very warm welcome.  I know many parents on here will benefit from your knowledge and experience.  Thank you so much for sharing.

Warmly,

Jen