seizures

[falc]

Hi my 14-year-old daughter is we think suffering from fnd, she has seizures 3 times a day they last about 40 min, but there at the same time every day, twenty past nine, twenty past two, twenty past seven, is this usual.

[Fireflygem]

Hi there,I've had fnd for just over a year, some people have patterns, some have triggers I find personally if I'm tired or haven't eaten in a while or stressed hightens the chance of my having a fit, sometimes it comes out of the blue. It's trial and error could be linked to when energy levels change, medications or various other factors. Your best bet is to record when and what happens then rely it to a neurologist as there maybe things that can help I hope they feel better soon and I know it's difficult watching people you love have fits, thankfully there functional meaning they don't cause brain damage, it was explained to me like a computer your body is a computer the hardware or body nervous system is fine we just have an error in our software meaning they don't communicate very well.

[falc in reply to Fireflygem]

Hi Thanks for replying, she is due to see a neurologist this week but we find it is strange how those exact times is when she as to have the seizures, we look at her and we can see her looking at the clock at about 5 minutes before the seizure then at about twenty past on the dot she lays back eyes rolling then slips into the seizure then she thrashes about for about 40 minutes, i sometimes say things to her and she will nod her head but can't reply, then she comes out of it we wait for about half-hour before she can walk properly, then she okay and then she as these drops faints that come on at random or maybe when she sneezes or light is flicked on, but these only last about ten seconds then its as though nothing as happened she just carry on looking on her phone, we worry because she is missing her schooling, just hope the neurologist might have some answers.

[Fireflygem in reply to falc]

I hope the neurologist can help, I had my first appointment last month which they wanted to rule out other conditions but I could possibly have other linked conditions but would still be under the care of the FND specialist, unfortunately I don't think there is a quick fix alot of treat the symptoms but no cure, as people with FND are different from person to person, I would recommend joining FND hope on Facebook as there is both a parent and carer group and for people with the condition and I think q child's group, they have support group as well as activity like seated plates, there is also FND hope have good info and you can get free cards explaining what fnd is and what help you may need, with space for details of who to contact in an emergency. Regarding school learning luckily unlike epilepsy what is learned is retained and I appeciate not being in class has it's disadvantages but luckily with modern technology things can be shared which has great benefit of being able to do work in parts, I appreciate this is a worrying time with gcses and uncertainty around covid but I'm sure her school will put in place a learning plan due to her disablity and ensure she will get extra time and support for things like exams and coursework on return and whilst distance learning, before covid and FND I was studying to be teaching with an interest in additional needs so know they can't refuse to make changes to ensure she can return to school if possible and safe to do so. 🙂

[Fireflygem in reply to Fireflygem]

Sorry fnd action for the cards 😅

[cocoferraro]

Hello there,Firstly I want to say hang in there as parents, this must be so very hard for you both.

I have had FND for 10 years. I am 55 yrs old. When I had my first seizure my 14 yr old son said I had scarred him for life! although we laugh about it now.

A neurologist is definately required, and a good GP.

Please look into your daughters past, is there anything unusual??

As I think there is always a link, however minor it may seem to us.

So sorry that you have to cope with the seizures, they are horrible to see.

Please think about the past as I think there may be a link?

Sending much luv to you and your family for christmasx

[falc in reply to cocoferraro]

Thank you, just hope the Neurologist can give us some hope.

[cocoferraro in reply to falc]

PLEASE LOOK INTO THE PAST AS I AM SURE THAT PAST EVENTS COULD BE CONECTED.

We wish you and yours a very happy christmasxxxxx

[falc]

Thank you for taking the time to reply, and a very merry xmas to you and yours.

[Fam13]

I’m so sorry to hear about your daughter! My 17 year old daughter was diagnosed with FND this past July. Watching her go through this has been so scary, sad and also exhausting. Along with seizures she also developed a tic in her neck and she would randomly just pass out too. Her seizures were always random and never patterned. We are pretty sure stress was the main trigger for my daughter. They normally didn’t come on during a stressful moment but pretty random but very frequent for quite some time. We have doctored with neurologists and psychiatrists and her pediatrician and have mostly been advised to remove as as much stress from her life as possible. She has found a therapist that is helping her learn ways to deal with stress and anxiety. She stopped working and driving for a while. She also started on line school in the fall. I am happy to say that her tics have went away(for good hopefully) and her seizure episodes have stopped for now as well. It’s hard for anyone to go through this but especially teenage girls. Sadly, she has lost a few friends and was made fun of but I think it has been a learning experience for her and I hope and pray she will continue to be positive and upbeat because it sure can wear you down I hope you guys can find some answers for you daughter. Best wishes!!!