nightime seizure 6 year old and peadiatric referral

[chocoraisin]

Hi all,

Does anyone have any experience of night time seizures in children? My DS has been having what I thought were night terrors, but he has no memory of them. Last night he had what was much more clearly a seizure. I spoke to out of hour docs, and GP today, he is being urgently assessed in a couple of weeks time. He doesn't remember the episodes and is highly anxious anyway so I don't know what to tell him?

If you've had a child with seizures can you please help me figure out what to say to him? How did you explain it? What happens at the hospital and was it scary? I know they want to check for Epilepsy but what would that mean for him?

Google is not my friend here. Please help me to stay calm - feeling very upset right now. School knows but he's being monitored without him knowing. I'm worried that this is the start of something worse. I think he's had about 3-4 episodes this year, so not exactly all the time, but definitely not going away.

Any advice or reassurance welcome! He's 6.

Thanks

My DD was diagnosed with a childhood epilepsy at the age of nine. She has three different types of seizures one of them presents very much like night terrors. Doctors are confident that she will grow out of this by the time she is 16.

It is a Very frightening time both you and your child.

Your child needs to be seen as soon as possible by a paediatrician with a special interest in neurology or or a paediatric neurologist.

At first appointment the Dr will want a full medical history for your child. Starting with pregnancy and birth and including any childhood illnesses. Especially any history of febrile seizures. Dr would also require a full family history including any relatives with a history of epilepsy and/or heart conditions.

The doctor should order an ECG (a tracing of electrical activity in the heart) an EEG (a tracing of electrical activity in brain) and an MRI of your DS brain. He will also need some baseline blood tests. Try not to worry too much about all of the tests,chances are all but the EEG will be normal. The EEG may even be normal. The doctor will also need to know how your DS is doing academically.

If your DS has any further seizures do not be afraid to call an ambulance or to bring him to emergency. He has no diagnosis at present so this is perfectly acceptable. If you do not hear from the hospital within a week call your GP and ensure an urgent referral has been sent and ask them to follow up. Look at the NICE guidelines for undiagnosed seizures.

Also one of my saviours in the early days was a charity called young epilepsy. Have a look at their website and give them a call if you need support. Also download their seizure diary app to record seizures and dr appointments. There may be an epilepsy nurse specialist at your local hospital who can also offer support.

Remember to tell your child's school. Until diagnosis they should call an ambulance if he has a seizure at school. My DD mainly has night seizures so this is rarely a problem. It may be similar for your son.

Try not to worry too much

thank you, we just came off the childrens ward having had an ECG, EEG and bloods etc exactly as you said - he had seizures Monday, Tuesday and Wednesday. His EEG was a 24 hour video one which is being reviewed at GOSH. Epilepsy clinic and second EEG ordered for 4 weeks time. In the meantime we have emergency meds on standby. I called Young Epilepsy. It's all a bit strange, I think I'm in shock.

They said it may not end up in an epilepsy diagnosis at all, he has a possibly related gut problem they picked up in hospital. So I have no idea what to expect going forward but I'm glad to be home.

Thanks for your reply, it's very nice to know I"m not alone X