I haven’t posted in this forum for a while but I wanted to share my excitement…in two days my daughter will no longer take meds. She has epilepsy and has been on Depakote Sprinkles for over 3 years. I am excited and a little fearful. Although I posted details in the past, here is a little summary…
She started having seizures right after vaccinations but I was constantly told I was wrong and that she was not having seizures. Besides loosing language for six months (that came back all at once) she was not developmentally delayed and was functioning fine. So for almost three years I continued to vaccinate and she continued to have seizures. At age three I demanded an EEG which proved she was having seizures, many, day and night. They wanted to medicate but I was more afraid of the meds than the seizures since she was fine. For almost three years I’ve been telling the neurologists that the meds have affected her worse than the seizures. She was confused, her speech was disjointed, she wet the bed nightly, she had no memory, she acted strangely, etc. In April the neurologist agreed to start weaning her off the drugs. It’s been amazing. She is back – not confused, communicates well, acts more typical, doesn’t wet the bed, is not as frustrated, etc. All the behaviors the drs said were her ‘issues’ and they insisted were not caused by the meds are gone. Her seizures were always subtle so I cannot be sure she hasn’t had any but I’ve seen no signs. (trembling hands and feet, starring, non-responsive, etc.) I am nervous to have her off the meds but excited to have her back. I also feel horrible that she's lived half of her life in a fog.
I know sometimes (often) the anti-seizure meds are necessary and they do not affect everyone like they affected her. But I am so happy she is doing well without them and hope she can continue drug-free.
I originally planned to post asking about other children who have gone off anti-seizure meds and how it went. But I’m not sure I am ready to hear negative stories. I really want this to work. She is so much happier.
p.s. Her sensory issues are more intense now but that's fine with me. That is a part of her and we can work through it.
She started having seizures right after vaccinations but I was constantly told I was wrong and that she was not having seizures. Besides loosing language for six months (that came back all at once) she was not developmentally delayed and was functioning fine. So for almost three years I continued to vaccinate and she continued to have seizures. At age three I demanded an EEG which proved she was having seizures, many, day and night. They wanted to medicate but I was more afraid of the meds than the seizures since she was fine. For almost three years I’ve been telling the neurologists that the meds have affected her worse than the seizures. She was confused, her speech was disjointed, she wet the bed nightly, she had no memory, she acted strangely, etc. In April the neurologist agreed to start weaning her off the drugs. It’s been amazing. She is back – not confused, communicates well, acts more typical, doesn’t wet the bed, is not as frustrated, etc. All the behaviors the drs said were her ‘issues’ and they insisted were not caused by the meds are gone. Her seizures were always subtle so I cannot be sure she hasn’t had any but I’ve seen no signs. (trembling hands and feet, starring, non-responsive, etc.) I am nervous to have her off the meds but excited to have her back. I also feel horrible that she's lived half of her life in a fog.
I know sometimes (often) the anti-seizure meds are necessary and they do not affect everyone like they affected her. But I am so happy she is doing well without them and hope she can continue drug-free.
I originally planned to post asking about other children who have gone off anti-seizure meds and how it went. But I’m not sure I am ready to hear negative stories. I really want this to work. She is so much happier.
p.s. Her sensory issues are more intense now but that's fine with me. That is a part of her and we can work through it.
about her soon being off the meds! I am praying that she is able to stay off the seizure meds and does well. 
