DD diagnosed with epilepsy, feeling overwhelmed

[Nameusers]

DD9 has recently been diagnosed with epilepsy, had a conscious seizure with head and right side arm jerking in February, family history of seizures so consultant sent DD for MRI, CT & EEG, the EEG showed activity and focal seizures have been diagnosed.

Just feel so out my depth with it all, don’t know what I’m looking for, there’s so much information out there but I don’t know if I’m reading the right stuff.
medication is carbamazepine, it’s making her really tired.

The last few days she’s been under the weather, tired and just not feeling great, this evening she kept complaining her head was pounding (mostly when she got up and moved around a bit more) and then not long after she fell asleep she woke up and said her right hand was twitching outwards and wouldn’t stop.

any advice or tips would be greatly appreciated as I just feel a bit overwhelmed and can’t organise my thoughts with it and don’t want to present as worried to DD

Have you got a local epilepsy nurse? Ask for a referal, they can really help.support you both

This could be a valuable resource @Nameusers 🌻

I know exactly how you feel. Sounds like a very similar path to how my son was diagnosed. He was diagnosed in December with focal seizures. It has been the hardest thing to get my head around and every day I worry for his safety and future. I echo what the previous person said about your local epilepsy nurse, ours has been so helpful. I am sorry you are going through this. Our consultant said that everyday you will get braver and she was right. Every day that goes by things get a little easier.

thank you both.
An epilepsy nurse actually contacted yesterday and is going to send out some general info and send a care plan to the school.
The consultant is really lovely, and I know this is because she probably deals with hundreds of similar cases, but it all feels rushed, I’ve spoken to her twice and both times it’s like she’s just having a quick chat to let me know something and make an appointment for the following month.

Did/does your son experience other symptoms (if you don’t mind sharing)
DD has complained of pins and needles in arm and stomach aches that spread, she’s been quite anxious for the last 2 years but I’d put that down to a change in circumstances at home (but it could also just be that and not epilepsy related)

My Dd was diagnosed about 3 years ago at the age of 12. She has tonic clonic and absence seizures. I know very well exactly how you feel. Her diagnosis is the hardest thing I’ve ever had to deal with. She is currently well controlled with the third medication we’ve tried. I don’t know much about Carbamazepine but the side effects of epilepsy drugs seem to always include tiredness! It took Dd several weeks to adjust to each drug and several years to get a type and dosage that work for her and that she appears to be her ‘normal’ self. We’ve been lucky that side affects have been reasonably manageable. She still has tiny break through seizures but it’s such an improvement from the weekly tonic clonic that it’s just something she lives with right now.
The one thing it’s taken us too long to realise is the impact it’s had on her cognition, memory and processing speeds. I don’t know how old she is but be aware that it can affect performance at school.
Epilepsy nurse is definitely our best medical resource. It will take time to process and I still get overwhelmingly sad at the thought of what this means for her long term. I don’t spend every day dreading a seizure anymore but the worry is constant.

Just read up a bit - pins and needles is a common symptom for focal seizures. They’re a type of aura. There are also a type of seizure that happens in the stomach but they’re very rare and seem to include vomiting. Headache and tiredness extremely common.

I was diagnosed at 18 and it was a brutal 18 months getting the right medication and then the right dosage. However, if it is of any comfort I have lived an ordinary life, I have a career, my driver's licence, play sport etc. but she will have to be mindful of her alcohol consumption (was a bit sad that I could never cane it like the others at uni!).!

Admittedly I was a bit older but I flat refused to go on medication that could cause birth defects, so that might be something to consider now (if a teen) or down the line.

I would talk to the school or at least give them a heads up that adequate learning and pastoral support is in place. My short term memory isn't great, so I have to write good notes, either at work, personal reminders etc.

Also tiredness can induce seizures, so make sure she has a good night's sleep.

It is overwhelming when a child gets a diagnosis. Take such good care of yourself while you support your DD.

Support groups for parents, whether online or in real life, are so helpful. There will be experienced parents who can understand your situation.

Also being honest with friends that you need a bit of adjustment space, to take the pressure off.

Three organisations that might help are Epilepsy Action, Epilepsy Society and Young Epilepsy.

Epilepsy action definitely very useful. Be wary of online groups and Facebook groups. I found them filled with people with the most extreme forms of untreatable seizures, it’s was so depressing. People who have control of their epilepsy and lead a normal life don’t post on the internet!
Does she swim?? That was a big thing for my Dd.

Thanks everyone.
She’s only 9 so don’t have to think about driving or medicines that cause birth defects quite yet thankfully.
I spoke to her teacher recently and she’s been absolutely brilliant tbf, did her own research and has been updating me with things like complaints of headaches etc.

I’ve read some stuff about ‘aura’ but is that an actual seizure or a precursor (like you get an aura before a migraine?)

thank you for the info about different sites, have had a Quick Look and they look useful so will spend some more time over the next few days reading.

thank you for sharing your experiences and sorry to hear that you/your children have had to live with the upheaval and worry too