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4 monthd old daughter diagnosed with focal partial seizures - overwhelmed & scared
Wed, 02/05/2020 - 18:52Topic: Parents & Caregivers
Hi - new here and a little bit overwhelmed having just received an epilepsy diagnosis for my baby girl. About two weeks ago i started noticing seizure like episodes where my daughters eyes would roll back and twitch and sometimes her mouth would quiver. We just spent two nights in a pediatric epilepsy monitoring unit on a 48 hour EEG followed by an MRI. She did have a seizure while on the EEG and the Dr noticed what he called a "birthmark" on the right side of her brain where the layers potentially didn't develop correctly in Utero - another term for which is cortical dysplasia.
She's been started on Oxycarbazepine as the first line of defense against the seizures and we are supposed to monitor and see where we go from here.
Quite frankly i'm still processing and i'm still terrified and totally overwhelmed. I am posting this to see if anybody has had similar experiences with their children and what was their journey like/how are they doing now?
- Will my daughter develop normally?
- What are the odds medication will control her seizures.
- Any chance she can "outgrow" these seizures
thanks everyone
Comments
You all may want to consider
Submitted by 5af734377e on Thu, 2020-03-26 - 10:57
You all may want to consider keeping a journal or adiary. MySeizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary
Hello. I am sorry about this
Submitted by Sean66208 on Tue, 2020-02-18 - 23:07
Hello. I am sorry about this situation and know how overwhelming it can be. Our son was diagnosed with epilepsy at 9 months after having a significant seizure. Same as your daughter - due to cortical dysplasia.We had many of the same questions you have. He is now 8 and doing well, although he still does have seizures despite several interventions. Although each case is different, I would be happy to share our learnings with you. There are so many, it might be difficult to do effectively via this forum. Happy to talk over the phone to the extent that might be helpful.Sean