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12 weeks old diagnosed...

Thu, 07/05/2018 - 01:47
My daughter got her first seizures a little over a week ago. She was twitching sometimes on one side of her body, then both, and her eyes always kind of lean to one side and up. She had an EEG (it showed it's happening from her right side of the brain), MRI, blood work, Spinal fluid checked and everything came back normal. The keppra didn't work for her so they put her on keppra and phenobarbital. We went home, and she didn't have any other seizures until today. She didn't twitch or convulse anymore like last week, today she was just staring off into space towards the right. She would still blink but she wasn't responsive. We are at the hospital now and they are going to change her medication. I guess I'm looking for some advice on this. It was the hardest thing to go through last week, I feel like my husband and I have adjusted a bit but not fully. We were so happy to be back home this week and with her not getting anymore. So to be back here at the hospital again, and to see her so sleepy with the two loading doses they gave her, it's so heartbreaking. I just wish I knew she will be ok and back to her normal self for good even if we have to give her the medicine. Also, giving her the medicine at home was the hardest thing ever. The pheno made her have so much saliva and coughing. This all just breaks my heart so much. Last week the neurologist told us because she was doing good on the medication we didn't need to rush the genetic testing to try and figure out why she's getting them. So I hope us being back here again will make them hurry up and do it so we could hopefully get some answers.

Comments

Hello,My daughter is 3 years

Submitted by VictoriasMommy28 on Fri, 2018-10-26 - 12:23
Hello,My daughter is 3 years old and got diagnosed 6 months ago. We also were in and out of the hospital with medications not working. It is very hard. I can't imagine having a 12 week old diagnosed. I am so sorry. Stay strong for her. The doctors will try multiple medications and they will help! We were in the hospital for almost 3 weeks trying to find the right medications. Our daughter had up to 57 seizures a day! She now has seizure free for 2 months!! Thank god! Keep your head up. They will find the right combination. 

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