Hello I’m Perla im 13 and I am epileptic and I’m a very anxious teen in my free time I play video games, write, some more of my book or play on my phone
-Perla
2 Likes
Hey I’m Jordan
We have just been told my one year old daughter has epilepsy
For the past month she has been have clusters of fits and has been in and out of hospital she is now on daily meditation but as we have no idea what to expect or really what is best to support her any help or advice would be amazing
Thanks
Hi Jordan, That sounds tough. A new diagnosis can be a really scary time and there is a lot of unknowns around Epilepsy, but generally, the outcomes for babies are good. The next stage will probably be further tests and consultation to confirm the diagnosis if this hasn’t already happened. The best thing to do for your daughter is to keep an eye on her seizures and record when they happen so you have a record of how many seizures she has had and how long they last for the next time you speak with the doctors. I’d imagine she is in the room with you at night, but even if not, its important to keep an eye on any nocturnal seizures as well. This can be stressful but remember you are at the start of the journey, If you would like to talk to someone face-to-face, please drop us a message and we can arrange a time. If you have an epilepsy nurse, it may be worth contacting them, as they are there to discuss any medical concerns.
2 Likes
Thanks for that there is so much information to take in all at the same time now she’s home from being in hospital nearly a week she has to take daily meditation that we have to increase every week and it’s stressful but we have to do the best we can for her
I mite take you up on that offer of speaking face to face as it could help with understanding everything better
Thanks
2 Likes
Young Epilepsy also have a parents guide which I can arrange to be sent out in the post to you, or you can download it on our website here
I’ll send you a quick message as well with how to contact us as well
Hi there im a mother and carer for my child of 11 who has drug resistance epilepsy and feel like its a forever battle, now on steriods short term after another drugs wean of lamotrigine. Have tried a few meds and the ketogenic diet and also has the vns. Have also been trying to help establish a local epilepsy support group. My child is currently on short term steroids at the moment and has also started perampanel alongside 3 other meds i feel its too many meds but i feel like its been an on going battle. My child also has learning disabilities and speech and language delays also has an ehcp so if anyone would like any guidance or help. But would be good to chat and learn from young people living with epilespy and also parents, carers and professionals
2 Likes
My daughter was diagnosed at a similar age and two years later has already grown out of it, despite going through an incredibly rough time when she was a baby.
It was a long slow time process to get here so that I would just advise to keep an epilepsy diary and record everything you can. I was also told to take videos of seizures as we could then show the docs what the seizures were like, which helped finding the right med.
I would also advise, if you are stressed, to speak to your work and take time off. Also speak to your friends and family and find an outlet to deal with your pain.
Always happy to discuss.
1 Like
Hi there many thanks for your reply. I keep an epilepsy diary on this app… Im not in work as unfortunately i had to give it up as my son was poorly back about 3yrs ago. Seems my son will always have epilepsy now as drug resistant… He also has damage to his cerebellum which was due to taking phenytoyin.
Hi, I am Jenny a 24 year old who has had a diagnosis of epilepsy since the age of 7. I am fortunate that my epilepsy has now been controlled for the last 4 years (and really hoping it stays that way!) but would still love to hear other people’s stories and hope to share some of my experiences with others too!
Hi Steven, I suffer with tonic clonic seizures and absences as well, can I ask what medications you are currently on?
Hi, I’m Susie. Our 9 year old son was diagnosed about 4 weeks ago and placed straight onto keppra. It’s all so scary and daunting having had no experience of epilepsy at all.
We have noticed such a dramatic change in his behaviour, temper and sleep pattern.
He was always such a good sleeper but now struggles to sleep before 2/3am regardless of what time we wake him in the morning or how active we keep him through out the day.
Any advice would be greatly appreciated 
Hello I’m Matthew I’ve recently found this website and looking forward to making some new friends I’ve got generalised epilepsy so i have absences and jerks multiple times a day and tonic clonics mostly at night
2 Likes
Hey how are you I’m Matthew
Hi Joe, I was wondering how you have found the exam process at University as my son has really struggled this year since starting lamotrigine in May 2020.
Hello my name is Rebecca,
And I am a mother to a 2 1/2 year old little girl who was diagnosed with epilepsy at the age of 6 months old. It’s has been a long road with little or no support and we as parents have been left to it. We are now on the pathway to surgery at GOSH for Florence to have a left hemispherectomy. As you can imagine this is a very scary time for not only us but Florence who has very little understanding. If anyone can get into contact with us and share you experience if you or your child has been through brain surgery. We have asked GOSH for support from other family’s but not contact has been made. Just a little support would be nice as it’s unknown really to what’s going to happen before and after.
Thanks everyone.
1 Like
Hello, my name is Rachel. I have epilepsy and I also have a back problem. I am 13 years old. I am almost turning 14. I would like to talk to people who have epilepsy. I like the film After, I like my mum, my sister and my dad, My dad works in a school. My mum helps me and my sister. I like my great nan a lot, and my little cousin. I like painting. I like watching films, and that’s mainly it.
Written alongside Marie (tutor)
Hi Matthew, my name is Rachel. That sounds like me!
I was wondering if people have any ZOOM calls? I would like to talk to other people my age
from Rachel (via tutor)
1 Like
Hi Megan, I take Topiramate, Lactimal and Propranolol (spellings might not be correct!!).
My meds have been increased over the years and have helped reduce my seizures, but can make me tired.
Hope you have managed to find the right meds.
Steven
By the way using my mum’s account to reply!! Steven