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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

Getting the right medication

Submitted by just_joe on Sun, 2018-07-15 - 13:37
Getting the right medication and dosages is a trial and error thing. A medication that works for one person may not for the next. It is the same with doses. Some people require a low dose while there are people like me that require the highest dose the manufactures will allow.You do need to understand that seizure medications are not like aspirin where once taken it goes away after a few hours. Seizure medications build up in the body to the therapeutic levels the neurologists want. It takes time for her body to get used to the medication and that time period is about 3 weeks which is about the same time period it takes for the therapeutic levels to build. Genetic testing can be done but many times they too find nothing.If the loaded dose she was given in the hospital had phenobarbital in it then that is the reason she was so sleepy. Research phenobarb and you will see that it was also used as a sleeping pill. I know about it well since I took it for about 30 years. The amount of phenobarbital I was taking in one day according to my neurologist "Would put the average man to sleep for 24 hours." (I said I always had to take the highest dose) I do hope they find a medication that stops her seizures and she gets seizure freeJoe

Do they suspect genetic

Submitted by mereloaded on Tue, 2018-07-31 - 18:21
Do they suspect genetic disorders linked to epilepsy? 

It sounds like a focal

Submitted by RTLEmum on Tue, 2018-08-14 - 11:24
It sounds like a focal seizure, possibly temporal lobe. Fixed gaze and eye deviation to one side is classic complex partial. You need to get your baby to a Level 4 epilepsy center under the care of an epileptologist. As a parent, you will definitely want to rush and figure out what is causing the seizures. Seizures are not benign and the earlier you can figure out this puzzle as to why she is having seizures and what the diagnosis is, the better you will be. I would encourage you even after the diagnosis to get a second opinion at another Level 4 epilepsy center. I speak from experience. The neurologists who first evaluated my child in the hospital after a seizure completely got the diagnosis wrong and we wasted years when my child could have gotten help. I am so sorry you are going through this. The quicker you get to the bottom of this, the sooner your life will get back to a new normal. After some very scary years of seizures, I am happy to report that my child is doing GREAT. So have hope. As bad as it looks, you will get to the other side. However, be easy on yourself and your husband--you haven't even had a child for that long, let alone dealt with an epilepsy diagnosis. It's going to take you at least a year--it's a marathon, not a sprint. Pace yourself.

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