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Topamax disaster!!
Fri, 07/08/2016 - 07:15Topic: Parents & Caregivers
Recently a new neurologist looked over our daughter's EEGs and changed her from focal to generalized seizures. She had been on trileptal with no problems but new neuro explained that trileptal doesn't treat generalized seizures. Hubby and I made the decision to switch and it was the worst decision I have ever made in my lifetime riddled with bad decisions. Our daughter who is now 3 and has slept in her room since she was 6 weeks old now cannot stand being in her room. She is terrified. Screaming. She won't sleep. She is incredibly mean and hurtful. We are currently weaning her off of the topamax but this has been the worst week of my life and I am sure hers too. Please someone tell me I will eventually get my sweet girl back after this crap is out of her system!
Comments
Her seizures are grand mals,
Submitted by JessieHornyak on Sat, 2016-07-09 - 06:56
Her seizures are grand mals, but they always start during sleep so we can never catch the beginning of them. She had some "tics" that either the Trileptal has helped or she has grown out of I am not sure which.
Right now our plan is to just
Submitted by JessieHornyak on Fri, 2016-07-08 - 21:49
Right now our plan is to just keep her on the Trileptal and we go back to see new neuro on August 1. We switched to this new neuro because we felt we could communicate with him better. Although unfortunate I don't blame him for this reaction in my girl. The old neuro put her on Keppra to start and she had a horrible reaction to that as well (physically in the form of a rash not mentally or emotionally like the Topamax has done to her). It is going to take a while for me to be willing to try another med on her.