Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Struggle with epilepsy

Hello everyone!
My son is 10 years now, he has had his first tonic- clonic seizure when he was 4 years old it happened only once but age 5 the seizures escalated 3-4 seizures daily. He got the diagnosis and we tested different epilepsy medications prescribed by his doctor like lamotrogin, kepra, topimax ( i live in Europe now I don’t know what these medications are called in US.) and more but unfortunately nothing worked instead seizures increased. More seriously his behavior has changed completely. He became aggressive started to hit kids lost concentration
couldn’t sit still in one place etc. The doctors prescribed to him to Frisium age 6 which he takes it together with ospolot now. Nothing has improved every year is health is getting worse. Now he has 2-5 tonic-clonic seizures 98% of time during sleep. Each seizures lasts 3-4 minutes. He got diagnosed to have intellectual disability age 7. Last year he got a new diagnose as autism which was shocking to our family. Now two school assistants can hardly keep him during school time. He hits staff, hurts himself can not find a simple address if he is left alone. He is not afraid of cars passing by if you won't stop him he is going for the cars to get hit. meanwhile if you leave the balcony door open he does not hesitate to jump over and hurt himself. Now epilepsy is not our only concern but we are struggling a single dag to get through it without any injury to him or people around him.
The only thing the doctors here are doing is changing his medication, taking EEgs but at the end of the day the kid's health is getting worse day by day and we get no where.
I can't travel to US I have a job here.
Any advice is highly appreciated. You can even send me emails with more information etc.
best wishes,
Rafi

Comments

My Email address is ( rafi

My Email address is ( rafi.saboory@gmail.com)

Hi,Thank you for posting, it

Hi,Thank you for posting, it sounds like you all have been through a lot. It’s important that you’re continuing to express your concerns regarding your son’s seizure frequency and behavioral issues with his healthcare team (that you're comfortable with), who can help determine what individual treatment plan is best for him. Be open and honest about how you all are feeling,and how this is affecting his health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . If you feel you cannot talk openly with his doctors or that you all aren’t working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/se... . If you have not already you may want to consider having your son see an epileptologist (epilepsy specialist), who can provide more specialized care for his epilepsy.  For help finding a specialist near you and for additional resources in your country please visit:https://www.ibe-epilepsy.org/about/ibe-chapters/europe/ https://www.ilae.org/regions-and-countries/regions/ilae-europe/chaptersA..., 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-... . 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%20facts... 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-chil... . 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-...

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P