My 3 year old daughter has focal epilepsy
Posted , 4 users are following.
My daughter was diagnosed with focal epilepsy in April and since
then she's been on medication to try control the seizures. The dose was put up 4 weeks after starting due to the medication not stopping the seizures but it did reduce them. it seems now after around 4 weeks that the seizures are becoming more frequent again. Is the normal? I've been asked for a diary and videos for next appointment with consultant but very had to catch the seizure due to them been so quick. Any advice please
0 likes, 36 replies
alfred5 tammy01624
Posted
Hello. I just thought I would say that my son was diagnosed with focal epilepsy. He was 3 at diagnosis. He's now 7. They seemed to come from nowhere and he was having about 50 in 24 hours. (Lasting between 30 seconds and a minute each time)
He was put on tegretol. Like you just 2.5ml to start, then 2 weeks later up to 4ml.
The difference we had, compared to you was that the seizures did stop within a week. He has never had another.
The consultant wants him off medication now. I was told it is quite unusual for focal seizures to be controlled with just one type of medicine. Apparently it usually takes 2 types. So I am sure you will find your daughter will be given a second lot to try.
Wishing you all the best. Good luck.
tammy01624 alfred5
Posted
Hi there, thank you for your help.
Is there a reason to why your son had the seizures to start with? My daughter has a birthmark on her brain which showed up on the mri. Not really had much advice on her epilepsy. Just that she will always have it and it will be controlled by medication, which doesn't seem to be helping at the moment.
Was there anything that brought the seizures on?
The medication seemed to have worked for a while, they reduced them to 1 a day and then 2 weeks ago they've started becoming more again. The only thing I can pin point is, I have a baby that's now in the same room and has been up most nights crying for her bottle so I'm thinking that her broken sleep maybe the issue. I do find she has more seizures when she's tired.
Ive now put them in different rooms to see if it helps. Really hope it does.
Thankyou again.
alfred5 tammy01624
Posted
Hello. Yes they say stress and lack of food can both trigger a seizure. The only thing that seemed to trigger my sons epilepsy, the start of it, was his pre school jabs. It's too much of a coincidence that they started the same day as his jabs. No actual cause found but I do believe the jabs triggered it.
My father also had epilepsy. Seems it can run in families.
I have been told he may grow out of it. But I will have to wait and see. They want to take him off medication. It has not been increased in 2 years, so he is slowly weaning off. I will take him right off in a years time. (If no more seizures between now and then.) I hope you and your daughter get sorted.
Winnie143 tammy01624
Posted
When my Daughter was very young she had her jabs and she got the sniffles and got hot, my Daughter is 40 now but she had a convulsion they said, and my Doctor advised not to give her the rest of her jabs. This was approx 39 ye
ars ago.
I wish you and Daughter well, lets hope she grows out of them xx
I have had epilepsy since puberty and I was worried she'd be like me but she is not phew!! I was told when my daughter had a fit to always cool her sweat points down ie cold compress on neck,arms and all folding parts of her and forehead.
Wishing you both well xxxxx
Rockmore tammy01624
Posted
Hi,
I'm sorry to hear about your child. I'm sure it's all new to you. I too was diagnosed with epilepsy at 3 years old. That was 30 years ago. I was originally on tregretol and came off it around 9 years old and I had no seizures from the ages from 7 until 11.
However, I was put back on medication during my early adolescent years as my seizures returned frequently although only several a week at maximum. The reason for epilepsy can differ from person to person and my own is unknown too.
I still keep a diary of when seizures happen and what happens just before and triggers, I.e. If it's a cold day/excitement/injury/bad dream etc. Although I understand this is harder for a child to communicate to you. It was only as I got older I learnt when a seizure was coming and your daughter will be the same especially when keeping some sort of s diary as you will spot the triggers also.
katie75513 tammy01624
Posted
Hi my little girl has had seizures which she needed to go hospital to stop them. I video'd her last one an consultant has diagnosed her with focal epilepsy she's 5 now. Just started taking meds today. Her last seizure was June last year but consultant said she might of been having them an I haven't noticed. Can anyone tell me if there child has changed since taking medication thank you in advance xx
alfred5 katie75513
Posted
Hello. What do you mean by changed? My son stopped having focal seizures within a week of being on medication. But his personality changed completely. He became very angry and aggressive. I don't know whether the medication adds to this. But he became angry before going on the medication. I found this harder to deal with than the epilepsy.
katie75513 alfred5
Posted
That's what I meant do they get aggressive or tired. Thanks for your help x
alfred5 katie75513
Posted
Yes my son is aggressive. But it maybe the epilepsy. Apparently focal epilepsy effects the part of the brain where the personality is. My son is completely different to the boy he was before epilepsy. But he is only like it at home (and other places with us, his family) He's perfect at school, never puts a foot out of place. So whatever causes it is controllable. I suppose it's good that he behaves well at school, but it makes me feel a failure as a parent when he gets so angry at home.
tammy01624 alfred5
Posted
Hi there, my daughter has changed loads since her medication. She seems very distressed over the smallest of things and the medication hasn't stopped the seizures, just reduced them. She's very tired all the time and off her food most days. She just been to the consultant last week and upt her dose of medication again for the second time in 6 months. It's very hard to work out what's her age personality and what's the epilepsy. I guess only time will tell.
alfred5 tammy01624
Posted
Hi yes. Sounds similar to my son. He was 3 at diagnosis. He's 7 now. I've been told it's not the medication. He's on carbamazepine tegretol.
tammy01624 alfred5
Posted
That's the same as my daughters on. Does your son get very stressed out with the carbamazepine? I can't seem to get her to eat most days, which is very out of character for her as before medication she eat loads. She sleep loads now and get very agitated over the slightest thing.
alfred5 tammy01624
Posted
He gets wound up at the most stupid things. Storms off and shuts himself in his room, then hisses at us if we go in. He also hits me and throws stuff at us, including his wooden chair he sits on to eat. He gets very angry and sometimes acts like a 2 year old. He's even threatened me with a knife. But as I said he's never done any of this at school.
Is your daughter a lot younger? He doesn't get tired and been a bad eater for a long time, fussy more than anything.
katie75513 alfred5
Posted
She's nearly 6 she loves her own company aswel an has a little tantrum if not going her way. An she is also a fussy eater. It'll be her forth day on meds tomorrow going just keep a eye on her x
Winnie143 tammy01624
Posted
Hi I know it is scary seeing your kids having a seizures but be strong as my Sister had 2 boys and when young they both used to have seizures the eldest and the youngest. The eldest grew out of it and is fine and the youngest had them up until approx 9 and they left him also. So good luck and I hope your children grow out of them xxxx never say never xxx
katie75513 Winnie143
Posted
Thank u me to she's been booked in for MRI hoping We get some good news x
tammy01624 Winnie143
Posted
Hi Winnie, my daughter won't ever grow out of them as the eeg showed a birth mark on her brain that's causing them. I just hope the medication starts to work and stops them as there taking over her mornings everyday as she's constantly sleeping to recover from her seizures x