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
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
