Stephanie Update

[KimP]

Dear Friends at CWE,
I am so sorry it has taken me so long to write this update. In November, my 17 year old daughter, Stephanie was hospitalized after the side effects of Topamax pretty much left her unable to walk or talk with complete numbness in her face, hands and feet. At this point, Steph was having 3-4 seizures a week (mostly during the school day), had chest pains, pain in her limbs, and basically was an emotional mess. To refresh your memory, Stephanie experienced her first "seizure" at the age of 16. She was a healthy, athletic teenager. After her second episode a month later, an EEG showed she was having seizure-like activity on the left side of her brain. This began a four month series of medication given to our daughter (Keppra, Trileptal, and Topamax). It also began a fierce battle to find a doctor who would listen to us. Our search ended at Rush University in Chicago, IL. It is where we ended up in November (this was a different hospital and doctor than the one we had been seeing up to this point). Stephanie was admitted to the hospital, detoxed from the Topamax and began a series of new tests..EEGs, MRIs, etc. By the end of our time at Rush Unversity, Steph was off all medication. She went home with an ambulatory EEG and wore that for a week without incident. She had her last seziure on November 24th and has been medication-free. The doctors at Rush determined that the very first EEG was not read correctly. They did not note any "seizure-like activity". We did find that she has low blood sugar. It has been 5 months and with the exception of a few anxiety attacks (she had to learn to trust her body all over again), Stephanie has been doing remarkably well. Her blood sugar is under control and she is taking much better care of herself. I don't know if we will ever truly know what exactly happened during that time. When we asked the doctor if the medication could have caused the seizures, the answer we received was, "it certainly didn't help". I also can't dismiss the power of prayer. Only time will tell if this chapter of our life is complete. What I know for sure is that I will never forget the people we met along the way. I also know that each and every day will be filled with prayers for those who struggle daily with epilepsy and the effects of medication. My thoughts are with all of you brave people. Thank you for sharing your knowledge and experience with our family.

God Bless,
Kim

[RobinN]

Kim, thank you for coming back and updating us. I have been wondering how Stephanie was.
Thank goodness your daughter is doing well. I believe that the medication Rebecca was taking made her seizures worse too. I have stopped all pharmaceuticals for my daughter as well. I believe for some it is not the correct path to take. Rebecca, has had a couple since, but they are coming under control with the neurofeedback therapy that she is doing.

I hope Stephanie is able to return to her basketball games, and enjoying life as a teen. I pray that her last years at HS are full of energy and life.

Please let us know how she is doing. I am glad that I met you.
God Bless you as well.
You have been a brave soul

[Bernard]

Wow! That's awesome that you got some positive answers and Stephanie is seizure and med free. Blood sugar disorders aren't fun, but they are manageable.

[brain]

That's great that things are returning back to normal
and glad you've returned to post back and provided us
and update! Let's hope things keep rolling!

[Georgiagirl88]

Glad Stephanie is doing so well!! That is wonderful news!

Michelle

[speber]

I'm glad Stephanie isn't going through those horrible Topamax side effects anymore!

We here at CWE will be here for you guys when you need us!.....the 'dinner party' has become one no one wants to leave! (Poor Bernard and Stace)




Speber

[KimP]

Thanks to everyone for your best wishes for our Stephanie! My prayers are with you all! This has been a wonderful, comforting place to voice my concerns and fears. It was a very bright light during a very dark and scary time. I will continue to check in with you all. I'm sending hugs to all the beautiful souls I've met here! Thank you and God Bless you all!

Kim