Juvinile myoclonic epilepsy in toddlers

Hello. I'm a very worried and anxious mum here. My. Son has recently been diagnosed with epilepsy. His seizures started soon after his 2nd birthday they ruled out febrile convulsions as he doesn't actually convulse. He stiffens up and loses consciousness from seconds to minutes. He also has absence seizures. After months and months of tests we have finally found that he is having seizures in his sleep which I suspected due to various symptoms. He would wake up with a blue tinge to his lips. His bed would be soaking wet. He does a lot of twitching and jerking in his sleep etc. Im reaching out because I'm trying to find someone who's child has this form of epilepsy. His consultant has said it is very rare for a toddler to be diagnosed as they go unnoticed by most people. I'd really appreciate some support and advice from someone I'm a first time mum but also epileptic myself I have a different form of epilepsy which causes me to have all kinds of seizures from absences to convulsions. I am well medicated but I feel incredibly guilty because his form of epilepsy is a genetic mutation of other variants. In otherwords he got it from me. To confirm the diagnosis and start medication we need to have a 24hr brain scan to look at his brain waves. I will need to stay in hospital with him and try to keep the 20 leads attached to his head. We also have an MRI scan scheduled. This is where my biggest worry lies. Could something have happened to him that we didn't know about? A little bump to the head when he was trying to walk or crawl (he's never been injured badly enough to go to hospital) the guilt is eating away at me and I haven't even considered how we are going to get him to take his medication which will be in liquid form. He is just shy of turning three and I feel like I've put the weight of the world on his shoulders already. Any advice and support would be much appreciated TIA xx

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Hey! I’m so sorry you are having to go through this. I absolutely get it and I wish I can give you a hug and tell you it’s going to be okay. My son has epilepsy. We found out when he was 9 months old. Hes 9 years old now. I always go and check on him make sure he’s breathing and if he’s sleeping on his stomach to turn him to his side. It’s 24/7 because I get worried as I have epilepsy too. I have been free of seizures for 4 plus years but it makes me feel guilty. But since having my seizures under control I am more able to care for him. Take him out and so on. I used to be so scared of the most simple tasks. If you don’t mind me asking, what kind of epilepsy does your son have? And yours as well. My son has the Lennox Gastro syndrome.

Hello, thank you so much for your message. I really appreciate you taking the time to reply. So we are waiting an official diagnosis of which type he has. They think it is Juvenile Myoclonic Epilepsy. He mainly has absence seizures and a lot of rapid eye movement. He has occasional myoclonic seizures which usually happen when he is poorly. He is medicated now which seems to be working well. We are waiting scan results which will decide if he has to stay on them. I had photosensitive epilepsy caused by a brain injury when I was a toddler myself. I was seizure free for over ten years until my son was born and my epilepsy came back in all different forms. Mainly nocturnal seizures which are linked to my hormones. I have been seizure free for nearly two years and my confidence is growing in taking him out to places. I'm still trying to get the side effects of my medication under control as they fight with my brain injury. It's a daily battle and completely exhausting sometimes but I have loads of support xx

My son had myoclonic seizures but then it formed into the syndrome he has now but I wish you all the very best. I’m glad you have a strong support group as it does get overwhelming at times. Stay strong mama ❤️

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