View Full Version : My 3 year old daughter has epilepsy

Tippy Toes
30-04-2011, 09:46 AM
:( On friday the 15th my daughter went into a fit (althought at the time i did not know what was happening) and we had to call emergency services.

She was in hospital for over a week and sufferered several seizures. One day she was constantly having seizures, if she woke from sleep she was going to fit. :(

They let us come home on Monday afternoon although they have not stopped the the fits she is having.

She is on Epilim.

She has three differnet types of fits, full on seizures, drop fits and startled fits.

I am wondering whethter anyone here sufferes from epilepsy and if you could give me some advice, do you have a child who has this condition?

Any help would be greatly appreciated - I am just so worried at the moment. I dont know whether they can stop all of these fits :(

Any help so appreciated :littleangel:

30-04-2011, 09:50 AM
Im sorry i have no experience of this, i wish your dd all the best, such a worry for you all x

30-04-2011, 09:57 AM
You poor things, it must be such a worry for you.

Did the hospital give you any information or the contact number of an epilepsy nurse? When my son was diagnosed with nocturnal epilepsy I was given lots of information, websites etc and also had the number of a nurse who I could phone if I had any concerns or questions.
I was also told that my son would grow out of it, which he did by the time he was about 15.

30-04-2011, 10:00 AM
So sorry to hear this. My son started with epilepsy when he was 17 after an operation on his shunt (he has hydrocephalus) went wrong. It is terrible to see your child suffer. Richard is on epilim and I have to say after taking it for about 3 months his fits reduced dramatically and then stopped and he has now been fit free for 5 years x They have considered stopping his medication but he doesnt want them to. He prefers to take the tablets and stay free

Good luck , thinking of you x I know this is a very frightening time. its just a case of being there to make sure they dont hurt themselves and wating till they have finished. I know she isnt a big as my son was when he started but please be careful if you move her during a fit as my other half would not listen to us and tried to pull Richard up during a fit and has permenantly damaged his back!!!!!.

30-04-2011, 10:01 AM
Hi, my daughter has epilepsy, she is 6 years pls now but got diagnosed at 2 years old. She has been in hospital several times and had loads of tests done. It didn't seem to effect her too much when she was little but now she's abit older her confidence is low when I'm not with her as she says mummy makes me safe, she has a ta at school as the epilepsy has slowed down her learning and she is about 18 months behind her peers, she's a lovely little girl and the best advise I can give you is to be honest to her and try not to let her see u panic, hard as it is. My daughter is on max dose of eilem and still haves seizures but not as many as she did, she was having about 20 aday!!! If you need to chat please pm me, there's a lovely book you can get on amazon to help you explain her condition to her and minded children, it's called 'mommy I feel funny' we've got this book and my daughter loves reading it.

30-04-2011, 10:08 AM
Hi, just wanted to wish you and your daughter all the best.
Big hugs sent your way

30-04-2011, 12:20 PM
oh i feel for you! my daughter is nine and we discovered last may she has epilepsy, like you totally out of the blue she had a seizure one evening and i had to phone an ambulance, i was alone with her as my husband was at work, it the scariest thing to see especially if its just started.

the doctors are still trying to sort my daughter out, hers are mainly nocturnal but started happening during the day so the decided to medicate her but she couldnt tolerate the medicine and its given her lots of gastro problems now! she has had the eeg and mri and we are now waiting for the ambulatory eeg, so at the moment she it quite difficult to control

i would do as someone else suggested and contact the epilepsy nurse, either through the consultant or your gp, i found information very hard to get and nobody told us about an epilepsy nurse and i found out by accident but she came to visit us at home and answered our questions and most importantly my daughters! also you can contact the school nurse as she should have a care plan put in place which will detail what they are to do if it happens at school and her general day to day care e.g my daughters says she has to be accompanied to the toilet or on the stairs in case she has a seizure, so they have a buddy system, also the teacher asked my permission to speak to the class about it, i agreed as my feeling was if it happened in the playground etc the children would know she needed adult help, also if it happened in class they would know what it was and they wouldnt be scared. so my thoughts were it would be very helpful that the other children knew and also wanted my daughter to feel it was nothing to be secret or ashamed about so it didnt matter that they knew.

also be prepared! get your backup plans sorted for if and when she either has one at home and you are minding and she needs to go to hospital or if she is at school and you get a phone call to go and get her or she needs to go to hospital.

just to add the epilepsy nurse also gave us some books aimed at children

Cammie Doodle
30-04-2011, 12:34 PM
No advise just wanted to send hugs :group hug:

30-04-2011, 12:47 PM
I really feel for you. My own daughter is now 2 1/2 and was diagnosed with epilepsy just after her 1st birthday. Its hard having to deal with your own child whilst also worrying what your going to do with your mindees should you need to rush to hospital.

I have always worried about childminding with my daughter condition but my parents have been wonderful during the times my daughter has had serious fits and been admitted to hospital. I have since taken on another child who suffers from similar fits as my daughter and her parents felt reassured that having dealt with my daughter that I would calmly deal with their child if it ever happens during their time in my care (luckily it never has)

Just have a nice relaxed chat with your mindees/parents and tell them about your child (in simple terms) and if they see anything happen they have to tell you straight away. We practice on little dolls saying we dont move them, we make them comfortable, get them a cushion and count till they get better (as I have to keep a note of the length of time each fit lasts), etc. They have witnessed a couple but now they realise shes going to get better so more often than not they just carry on playing whilst I deal with her.

Hope her medication help her to keep them under control.

30-04-2011, 03:54 PM
Just wanted to let you know I'm thinking about you. Big hugs for all of you. xx

30-04-2011, 04:30 PM
Hi, A big hug for you, I know you will need it. My ds had a fit the day after your daughter he had turned 7 days earlier. He got hit by a football my dh kicked and the result was our ds falling on the floor when he tried to come to me and having a fit. It only lasted 10 sec but they as you know are the longest secs of your life. Hospital said he was fine. Then on the wed he got caught kicking a ball by the dog. Result was he fell back hitting his head and again the same thing happened. The hospital had him in for longer as he has Neurofibrosis type 1(NF) and they can be linked with fits. They think its this or his body is going into shock. Due to the NF he is to have an MRI scan.
I have spent the last few weeks panicing about everything, DR said he could of to an adventure park the day after the last one but I couldn't relax. Its hard to relax when he is at school, esp when he comes out saying he fell but he was fine. Today he had football club which I was worried about.
Sorry that turned out longer then I thought, again just want to send a hug and by the looks of it you have lots of advice from other members x

30-04-2011, 05:20 PM
Hi I was watching secret millionaire this morning and the man helped a charity called Abbies Love based in middlesbourgh. The man gave them £25,000 for 50 bed alarms and another £50,000 for a EEG machine. I don't know much about epilepsy in children but read slot about it in dogs as our five year old golden Labrador as just been diagnosed.
Sending big hugs xxx

30-04-2011, 05:36 PM
I have no advice but want to send hugs, it must be so scary to witness fits especially with one so small. :group hug:

30-04-2011, 05:54 PM
Sorry I should have said that Abbies love is a charity that supports people and especially children with epilepsy

Tippy Toes
30-04-2011, 06:41 PM
Thank you so much to all your replies, you have been very kind :)