Mu 9 year old son had his first seizure during the night sound asleep. Thankfully and by chance I was there to assist and help him . Ambulance arrived and he was admitted. Consultant said he had text book Tonic Clonic seizure.
We are seeing specialist on 4th of january.
I have moved my sons bed into our room . i still cant sleep , i am absolutely terrified! The fact he was sound asleep makes it so dangerous. he was so blue i though he was gone !
I don’t know how to register and cope with what’s happened and the uncertainty.
😢
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Lbone25
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I wish I could hug you to reassure you through this frightening...there is no other word...time. It is the unknown that is so frightening. I'm an 82-year-old in the states and had my first seizure, the same as your son, when I was 15 and then saw a neurologist shortly thereafter. I'll prepare you because sometimes it is a trial-and-error period until they find just the right medication, but they will. I had three more over a year, but the medication increased my absence seizures or petit mals.
I think the most important thing my parents did for me was to explain to me that it happened because there was too much electricity in my brain and it created a storm, an overcharge. They reassured me that it was not something wrong with me, it was physical; that was 1955 and not as many people were educated. I always felt I took pills to control my electricity just like a diabetic takes insulin. Nothing stopped me in life; yes, it occasionally slowed me down from time to time.
So, I charged at life. No, I didn't get my license to drive until I was 23, I didn't get to graduate high school my senior year at 16 and had to repeat it and graduate the following year at the age of 17. I married more than once and have two terrific sons and grandchildren; none of them with epilepsy.
I'm so glad I saw your post...it is midnight here in Indiana and I'll have to get up early, but I'm so glad I read it and it is my prayer that what I've shared with you helps. Look at it like this Mom, it is just a matter of the right medication. Please private message me if you wish. He will soon have some tests and see what is going on. xx💞🫂
I have been in your situation! It happened when she was 12 and slept with me during Covid pandemic as her dad was in hospital ( Covid pneumonitis). She did not have any Covid symptoms but out of blue tonic clonic seizure.. was post ictal 15 min, back to normal self. Seen in ED, had fist seizure FU in Peads clinic. No clear cause identified. After 2 years, had 3 lots 6 hrs and 1 week apart when we travelled to a very hot country. Now on anti epileptic. I am still sleeping with her. Every move she makes I jump.. panic. No peace of mind. My sleep is patchy. She wanted to sleep in her room. Last 5 months she is sleeping with me. Worried about SUDEP. Not sure which kind of device is good for nocturnal monitoring.. feeling lost. Also she is having side effects from Lamotrigine ( itchy skin particularly at night - she takes the medicine at 5 pm and when drug peaks, I guess she gets the symptoms). Also anger issues, which is not her normal self.
Thankfully the local council has provided us with a a tonic clinic bed arlarm system . Not that this makes us feel any better. Can I ask did your daughter get any tests done .
Hi Lbone25. So sorry to hear about what you're going through it can't be easy for you.
Slightly different scenario as I started having tonic clonic night seizures around 4years ago when I was 50. My wife was asleep next to me when completely out of the blue I had a full seizure for the first time. Sounds like exactly the same thing happens ie skin goes grey lips, turn blue etc. When I wake up I have no idea what's happening and no recollection and it takes about an hour before I start to recover and can have a conversation with her. This seems to have happened on average 4 or 5 times a year since.
The neurologist will arrange for MRI scans and ECG and then he will start on some epilepsy medication. Unfortunately this is very trial and error so may take a while before they find the right combination of meds. But hopefully they will get there quickly.
My wife has said how difficult it was to deal with at first and would wake up at the slightest noise for the first few months but must be a lot worse when it's your child but try and be positive.
My son started having night time seizures a few years ago he’s mid 20’s. He has 4 or 5 a year. He wants to start driving but not sure if this will affect this as he’s only ever had then at night whilst asleep.
Hi. When I started having seizures I wasn't allowed to drive for 12 months. As long as the seizures are all sleep seizures then he should be able to apply for a license. The DVLA will contact your neurologist and check that he's only having sleep seizures. Be aware that if his prescription changes ie they want to try a new medication then he will have to stop for 6 months to check they are okay. Hope this helps.
It is a very difficult time for parents when they are told their child may have further seizures. Many parents find living with the uncertainty is not easy, but with time many find their own way of coping.
For this reason we have the following information to help parents and their children learn and feel as safe as possible:
You can download the information, or we can send information to you by post.
General epilepsy information for children. This includes stories and animations.
If you live in the UK, please feel free to contact us our helpline team directly, either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.
Almost identical situation. My 9 yr old daughter had her first seizure on Wednesday overnight, then another on thursday night. Had an over night stay at hospital and tests but no results yet. We're back home and i darent leave her. Im in piecesand so scared, i dont know what to do 😭
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