3 year son

Fri, 04/03/2020 - 17:36
MRI Shows heterotopia anb small cerbellum. Has seizures since 6 months of age. On two medicines Levitrasam and clobazam. Does not sit or crawl. Does not speak. Intelligence is not developed. Wanted to know precautions in travel and what to expect few years down the line


Hi,Thank you for posting. It

Submitted by Anonymous on Mon, 2020-04-06 - 08:51
Hi,Thank you for posting. It’s important that you’re following up with your son’s doctor,who can provide a thorough assessment and determine what individual treatment plan may be best for him. His healthcare team can also provide recommendations on traveling and review individual goals & expectations with you. You may want to consider keeping a journal  or a diary to help keep track of his seizures, medications, and other therapies by using a diary or a journal. My Seizure Diary, can be used to organize his health issues, record medication side effects, develop seizure response plans, and more, which can be share with his 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.pdf Every parent is different in how they cope with their child’s epilepsy. It is important to find someone you trust to talk about your concerns and worries. https://www.epilepsy.com/learn/managing-your-epilepsy/managing-your-child%E2%80%99s-epilepsy . Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also 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

Join Our Newsletter

Stay up to date with the latest epilepsy news and stories from the community.