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12 week old daughter diagnosed..

Thu, 07/05/2018 - 23:19
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. Today they told us she is maxed out in the keppra and phenobarbital so they are doing another spinal fluid check and blood. They are thinking maybe there’s a metabolism issue and Keto would help. But it’s not for sure until we get the results tomorro. I’m so lost you guys I wish I could help her already.

Comments

Generally meds are started at

Submitted by Amy Jo on Fri, 2018-07-06 - 08:08
Generally meds are started at a low dose and increased up to a therapeutic level or as seizures occur. That’s so patients use the lowest dose. Infants are limited in good med choices. Kids are a moving target because they are growing (which is like lowering the dose over time as they add weight) and their brains change as they grow. You really want to work with a pediatric hospital, best if it’s got an epilepsy centerand has epileptologists on staff. (Sounds like this might be the case). Seizures at such a young age are best worked with an epileptologist who specializes in infants. Metabolism issues are good to eliminate. Things often take longer than one wishes and answers are not always possible.

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