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Need help with absense seizures of a three year old

Sun, 04/19/2020 - 15:43
My daughter is 3 years old and had her first seizure when she was 9 months old which was diagnosed as a febrile convulsion. After that her seizures continued as febrile and afebrile seizures in spite of receiving antiepileptic drugs (Phenobarbital, Primidone, Valproate, Levetiracetam, Carbamazepine, Ethosuximide). Now, seizures happen as staring spell and she is not responsive. She currently takes Ethosuximide 500 mg/day, Zonisamide 200 mg/day, Clobazam 15 mg/day. Her neurologic examination is normal as well as her brain MRI, but EKGs show rare paroxysmal discharges. Her last three episodes of afebrile seizures took way longer than before, the first two she had seizure for more than one hour despite the administration of 10 mg Diazepam rectal gel followed by another dose of 5 mg. She was taken to the hospital and then was transferred to ICU. The last time, the seizure took about two hours after both administration of Diazepam rectal gel and she was taken to the hospital and had respiratory problems and the hospital inserted a tube to her lung to provide relief. We have tried different doctors and are trying to find a better solution to manage her episodes but we had no luck so far and the seizures are becoming longer and more scary every time. We have been to pediatrician neurologists in Iran and Spain and are trying to consult with epilepsy centers across the world to find a solution and a drug that can help manage her seizures. Any help and guidance would be appreciated, we are really in desperate need of better alternatives.

Comments

Hi,Thank you for posting, it

Submitted by Anonymous on Mon, 2020-04-20 - 09:40
Hi,Thank you for posting, it sounds like you all have been through a lot. Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects.However, we know that some individuals may experience too many side effects,that are very bothersome or cause other health problems. To learn more about the medications she’s taking and things to look for, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects . It’s important that you’re continuing to express your concerns regarding your daughter's seizure frequency, or if she experience any changes in, side effects, symptoms, mood or behaviors with her healthcare team, who can help determine what individual treatment plan is best for her. Be open and honest about how you all are feeling,and how this is affecting her health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . You may want to consider seeking more specialized care for her epilepsy at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan maybe best for her. Epilepsy centers can also help connect you with additional support groups, educational sessions and connecting you with other families. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center  .You all may also want to consider keeping a journal or a diary to help keep track of her seizures, medications, and more. My Seizure Diary, can be used to organize her health issues, manage medications,develop seizure response plans, and more, which can be share with her healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfEvery parent is different in how they cope with their child's epilepsy. It is important to find someone you trust to talk about yourconcerns and worries. https://www.epilepsy.com/learn/managing-your-epilepsy/managing-your-child%E2%80%99s-epilepsy . It may be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents . Additionally,you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance,and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline 

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