Epilepsy

[Mumt01]

Hi there. My 5 year old ds has just been diagnosed with epilepsy. He had an EEG which showed he has focal seizures and generalised seizures. I feel really shocked by this as I've never seen him have a seizure, he has had a few at school where he has fallen to the floor and gone floppy and been unresponsive for several minutes which is why he had the EEG but how have I not noticed any? He does daydream a lot and can seem a little vacant could this be related to his epilepsy? Anyone have any experience with this? I have been given epilim to give him however he won't take medicine. I feel so lost and alone and just want to help him.

Xx

Hi does anyone have any advice here. I finally got him to have his medicine tonight which is a relief. I'm really concerned that I've been told according to his eeg results he has generalized seizures and focal seizures but I've never seen him have a seizure, he's had a few at school but that's it. I'm worried he might have brain damage. He has other problems with learning and development. He's being referred for an mri scan.

Xx

Sorry to hear about your son - a close family member has it and it is a scary diagnosis. The daydreaming and vacant episodes sound like they could be 'absence seizures'?

Be aware that all epilepsy meds can have different side effects for different people. My son got a diagnosis aged 4. The epilim stopped his seizures but made him wet the bed so we moved on to keppra. He was seizure free from seizures for a few years on keppra so we weaned him off and now he is seizure free.
Some things to be aware of: use a seizure pillow at night and get a baby video monitor
Keep him away from water unless he is fully supervised
Epilepsy is often co-morbid with autism
The charity Epilepsy Action have a good phoneline for support.
You have my sympathy. My husband and I were very depressed after our son was diagnosed and I had to have counselling for anxiety. You are not alone even though it can feel that way. My son is thriving now so there is hope xx

Hi. My daughter who is five was diagnosed with epilepsy as a baby, though she is currently seizure free and doing well. The time around diagnosis feels a bit like the rug is pulled out from under you. We found groups on Facebook to be very supportive, worth looking for general child epilepsy ones, I now admin a group for my daughter's condition. Epilepsy Action run free online training for parents and school staff which may help you feel better able to cope.

He could be having absence seizures.

He needs to take his medication, you'll have to be very firm about that,

Hi. My son is now taking his medication, he even likes to remind me about it. Since he's been on the medication the school have noticed he has been more lively and energetic so feel the seizures could have been making him tired. At home after school he has seemed a bit over tired and moody but it be interesting to see if I notice a change in him over half term.

Xx

Hi, can anyone recommend a very good paediatric specialist neurologist please for a 10 year old. Someone who specialises in rare forms of epilepsy. ( Electrical status epilepticus during slow-wave sleep (ESESS) London and Surrey best but willing to travel further. We have been to GOSH but it’s a nightmare getting appointments there. Any advice/help/recommendations greatly appreciated.

Amiandari sorry I can’t help you but the epilepsy action website has a chat forum and you might get help on there. Good luck xx

Mistlewoeandwhine Thank you, I will have a look. 😊