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Daughter just got diagnosed
Sat, 04/21/2018 - 07:54Topic: Parents & Caregivers
My daughter is 3 years old and just got diagnosed with Epilepsy.. she started having seizures Sunday, got diagnosed Monday night and has been having them ever since. It came on so sudden, and threw out life upside down. She got put on Keppra, which shes still having seizures so it's not completely working yet.. they are slowly upping her dosage week by week. She seems to have side effects from this, very hyperactive but then very angry at the same time. Its hard to redirect her when she gets angry, and she gets upset at basically nothing.. is this normal? She has clusters of seizures, we had to give her emergency drug last night, and she still had another seizure less than 8 hours later. My husband and I are having such a difficult time coping and adjusting with this. Everytime we call the doctor, we feel as though we are bothering when we are just scared and worried.. we also have another 7 week old child at home which makes this even more difficult than it already is. When will our daughter get better? When will she be back to her happy self?! When will I be reassured.. this is so hard.
Comments
Hi. Thank you for your reply,
Submitted by VictoriasMommy28 on Wed, 2018-05-09 - 06:06
Hi. Thank you for your reply, I appreciate the feedback. It does help hearing from someone. A little update on our daughter, we are back in the hospital, we have been here for a week and a half. She has been put on trileptal while we were still at home, but it seemed to make her seizures worse. She is now currently on vimpat, keppra, kolonopine, and now they have put her on a large IV dose of steroids for 3 days. She has one more day left of the steroids. She is still having a ton of seizures. They haven't told us what type of seizure she is having, but from what I'm reading they seem like partial / focal seizures. They start on one side of her body and now have moved to the other side. Right now it is 5am and she has had 7 seizures since 2:30am. They just had to "load" her. It feels as if things will never get better :(
How is your daughter doing
Submitted by ebrown78 on Wed, 2018-07-04 - 14:58
How is your daughter doing now? We had a similar situation in the past month. My 7-year-old started having seizures and we've been in and out of the hospital as well. She's on Keppra, Zonegran, and Klonopin and still having some mild focal seizures when she wakes up. We have to give her an extra dose of Klonopin in the morning if she has one because she tends to cluster as well. We are on our 2nd neurologist because the first one was way too relaxed about it. I hope your daughter is doing well and that the meds are figured out.
There is nothing that
Submitted by RTLEmum on Mon, 2018-04-30 - 10:46
There is nothing that prepares you for this as a parent. Lean on your local epilepsy foundation. Have them connect you to other parents/support groups. Don't hesitate to call doctors / nurses and ask for help, that is what they are there for. See if you can get help from your family, friends...you might qualify for help through the county or state for respite which would allow you a break to take care of your other child. Just as important as treating your child's epilepsy is figuring out a strategy for how you and your spouse are going to cope and figuring out the help you need. Train your relatives on the emergency drug so you can have some options for child care.