My daughter was 14 in May when she had her 1st fit although I never saw what happened as I found her unconscious on the floor, This happened again about 2 months later, again found her on floor, both times were at night when she was asleep. On both occassions we went to A&E, but by time we got there she was ok, very tired but all ok. The hospital referred her to see a consultant but the appointment time wait was 4 months.3 weeks ago she had another I saw the fit from the start,violently shaking frothing mouth, she always bites her tongue and wets herself, again trip to a&e they then arranged an eeg, only had to wait a week. Had to keep her up all night for her sleep deprived eeg, they made her sleep for about 20 mins when she was woken she was very strange, her eyes kept flickering and I knew she was about to have a fit, the hospital staff were brilliant, all was recorded on the eeg and when they moved us to a&e we got results of eeg straight away- was told they take 2 weeks to come back- and she has been diagnosed with epilepsy. All this before the out patients appointment. We are awaiting a mri scan now
I would suggest Natalie as soon as you are worried about you son take him to a&e, I would still be waiting for hospital appointment and my GP was no help at all, she told me it hormonal and probably migraines.She started her medication and hopefully that will control it. My daughters fits only last for about a mintue but it is a very frightening experience for any parent I am so grateful for the hospital staff that have dealt with it so quickly

Our little boy has just turned 9 and has been having absence seizure for at least a year now, possibly longer as we weren't aware at first, he recently had a EEG and we returned to see the consultant, who previously diagnosed this, only to find he'd retired and a locum doctor has took over his case. The problem being, they think it's more likely to be juvenile absence epilepsy because of his age. We are not convinced as the only symptom he has had are the few brief blank moments most days, and has been having them since probably about the age of 7. Juvenile absence epilepsy tend to start at puberty. But we are most concerned about the medication, if we decide to go down that route. Childhood absence epilepsy, treatment tends to be short term, a couple of years, juvenile epilepsy is lifelong treatment with what looks like many many side effects. We are totally confused and at a loss as what to do. Do we just accept what the new doctor is telling us or shall we decide to leave any treatment, as symptoms are minimal, and wait to see if condition worsens. As side effects seem huge and daunting. Has anyone had any similar experiences?

my 4 year old little girl has for approx. 2 years been having these episoded at night only where she starts to be sick & appears to be choking, apart from the choking (sicking) sounds she will be completely silent (no crying) she is totally unresponsive. When the vomiting stops she still looks to be stuggling to breathe/holding her breath & repleatly swallows. Her eyes are wide open looking upwards or floating about, she will go very pale & limp & on a number of occasions i have had to call an ambulance as we thought we were going to lose her. I have had to call ambulances when she has done this in the night time as worse(because having a full stomach), if she does it late morning (having a empty stomach) episodes dont seem as strong & we can usally put her on her on her side and tell her to breath, she will respond by a gasp or speaks very slow & slurred.
These episopdes usally go on for approx. 3-5 mins then she will just fall back to sleep and wake up as if nothing ever happened. When going to hospital by the time we get there she will have snapped out of this and cannot remember a thing.
Its never down to illness why she is sick as she is fine every time after, if she is poorly with a stomach bug for example she will awake crying & being sick as a poorly child does. She has had eeg/ecg which were normal apart from slight brain asymetry (what ever that is they say its not connected). whilst trying to explain to doctors they look at me gone out. I have a baby monitor on constantly but i am so stressed and frightened & am now trying to film her so i can show whats happening to the doctors. Has anybody come across this themselves or can anyone tell me what they think shes doing because i do believe that its some kind of fit. (she does this every 2-3 months)
thanks lynsay

Jenny, my daughter started having episodes like this when in October 2006. She was then 9. At first,she started getting twitching and numbness in one side of her face and lip. Then out of the blue one afternoon, she made a funny noise to get my attention and as i looked at her,she had her hand over her mouth and was panicking. I told her to move her hand and her mouth on one side was twisted and was twitching and pulling.She could not speak and she was gurgling and choking. I rand 999 as i had no idea what was happening! It lasted around 30 seconds and when the ambulance came,she had come out of it and was back to normal.
We took her to A+E and they ran tests on her,asking us to describe what happened.

Eventually,after she had had another siezure and i had video'd it using my phone(so i could SHOW the consultant exactly what we were trying to describe) she had an EEG and CT brain scan which confirmed benign focal epilepsy.

Our daughter also had a seizure during her sleep at 5am. We happened to hear a noice from her room and i rushed in(call it mothers instinct) and she was there,laying down having one of these siezures. She was choking so rightly or wrongly,i sat her up until it had passed. This scared me to death as i was so afraid incase i had not heard her. We went and bought a baby monitor that day!
Luckily,Emily SEEMED to grow out of them as she had gone 25 months seizure free.But then last Dec she had one and this time she lost consciousness also and school had to call 999.

Around 11 days ago,Emily saw one of her school friends get knocked over by a car,and the early sypmtoms of the seizures have returned.
-numbness in lower lip
-tingling in the lip
-flickering in the lip/

She has been getting this on and off ever since and i am worried she will have a fit soon,as is the norm after a few weeks of symptoms. We are not allowed to leave her alone for longer than 30mins according to her consultant.This is a real pain in the bum,especially for her,but when you consider what could happen.....

I hope your daughter gets a firm diagnosis soon as waiting and not knowing is awful.

Hi

It's possible that your son has epilepsy as some people have illness as a trigger of epileptic seizures. Although, it may not be epilepsy. Some children have seizures when they have a high temperature. That's called febrile convulsions, and isn't epilepsy. Febrile convulsions are common in children between the ages of six months and six years.

Your son's specialist may be able to tell you more about your son's seizures when they have all the results of his tests. While the MRI test doesn't show if someone has epilepsy, it may show if there is a cause for epilepsy. Sometimes epilepsy happens because of structural damage in the brain, and sometimes there isn't a specific cause.

It's not uncommon for young children to be given an anaesthetic when they have an MRI test, as it's important to keep still during the test. There are some risks when anyone has an anaesthetic. Your son's specialist can tell you what these risks are.

Rosanna
Epilepsy Helpline team

My 14 year old daughter had a major siezure a month ago today,completely out of the blue at 430 am,she has had a 24hor eeg this week so are witing for results,im so scared,if my husband had not got up to go to work early as usual we might not have heard her,she was on her back and sounded like she was choking so so scary,she was totaly unresponsive so we called 999,when she finally came round the side of her face had dropped and her speech was slurred and she was very confused,She is a very fit girl who does dance competitions,we did not see her actually fitting,has anyone esle witnessed anything like this with their child? she is in bed with me,im so tired,how do you get back to normal!! thanks Jenny xx

Hi my son turned 2 in April, today he had his first seizure. I took him to the hospital they did bloods and everything was fine. i have to go back in a weeks time but i am so scared, will it happen again. Baring in mind it was a hot day xx

my wife recently passed away after having only her second tonic clonic seizure,she was only 39 and 5 months pregnant with our 8th child,she was fit and well and and had been teasted,brain scans etc after her 1st episode only to be found clear,and told is was probably a 1 off,the coroner recommended that my 7 children be tested.but on visiting my gp,was told that there is no test until something happens,and it is extremely rare for it to pass through a family.yet my wifes sister suffered from epilepsy and our son had 2 fits when he was one.is there anyone who knows what i can do regarding tests,as i am worried.

Hi Caroline

It's not always easy to tell if someone' s having a seizure or not. This is because the symptoms of epilepsy can be similar to many other medical conditions. What also makes it difficult to diagnose is that there are around 40 different seizure types, and many different symptoms with each seizure.

What we can say is that headaches are not uncommon before or after a seizure. But it might be worth considering if it could be something else, such as, migraine? You could ask your son's doctor.

Rosanna
Advice and Information Team

Hi, my daughter (nearly 11) has been diagnosed with epilepsy for just over 3 years. She has been on medication ever since and slowly her behviour is worsening. Now this could just be because of her age and starting to hit puberty but it was so bad today when out shopping I started to think that it couldn't just be me' ot 'just be her' ; that there had to be some other reason. That's when I found this page online.

My 14 year old son is absolutely fine and I never had these sorts of problems with him as he grew up... I know that kids are different but my daughters behaviour is comparitively extreme to my son's at that age. My son is also able to see that her behaviour is really bad (mostly directed towards me -she's apparently a little angel at school) but unfortunately her father can't see it - and when I mention any of it he tells me 'to just deal with she's only a child' which I find totally unsupportive.

I am therefore now starting to think there may be a link with her increasingly poor attitude and behaviour because for the past 7 months her epilepsy has been uncontrolled. She was controlled perfectly for the first 2 years so a year ago the doctor started reducing her medication. Reducing her medication seemed absolutely fine as over the 5 months it took not one fit or absence occurred. Then suddenly with no warning the absences returned about 3 weeks after she came off the medication completely so we went back to the hospital. The doctor put her straight back onto the medication at the level that had controlled it for the previous 2 years but it had no effect. He has now slowly increased her medication - now more than double what it was this time last year - plus added another set of tablets (she is now on epiilm and lamotrigine) but she is still uncontrolled & has lots of absences daily and a full blown fit every 2 to 3 weeks.
Because of this we pretty much have to follow her about everywhere (like a toddler almost) because she has stepped out in the road during absences, nearly fallen downstairs, had full fits using the bathroom etc and has hurt herself quite badly sometimes. I know that being 11 and having your parents follow you about can also be quite frustrating for her so I don't know if this also impacts on her behaviour at home with me.
She has now been refered for a second opinion as the doctor doesn't know why we have not been able to regain control over her epilepsy. I am hoping that we get control soon because she is in daily 'danger' with this condition uncontrolled. She is due to start secondary school this year and with the current situation as it is we would be unable to let her get a bus to school unaccompanied let alone cross roads...
At the same time I am concerned that the medication may be the cause - or part of the cause - of her continual poor behaviour.
As I said before I get no support for her behaviour from my other half so I feel totally on my own with this. As far as he's concerned - because I am a teacher - I should be able to deal with an 11 year old.
Is there anyone in a similar situation/can offer support advice.
I just want my daughter back the way she was (behaviour wise)

Hi this is a message to reply to herom posted on 10/12. My son, Harry, who is now 5 suffered a left side cerebral infarct at birth. He first started having seizures at 6 months old. They started off as head drops looking like he was going to fall asleep. We were fortunate to have these witnessed by Dr at A&E who admitted him for obs. We had an EEG 2 days later. Harry's seizures up until the last year only happened whilst falling asleep or waking. Apparantely this is quite a common occurence with epileptic children as its to do with the transition to and from sleep within the brain. Harry has had controlled periods on medication where he would only have 1 seizure a month but then all of a sudden the drugs wouldn't work and we would hav to change to an alternative. The thing is with a lot of epilepsy meds is that they are not licsensed for children so I understand your concerns of not wanting to put your daughter on them before ou have an EEG. The downside is that left untreated the seizures may become a lot more frequent very quickly. In my experience lots of the med sused are general epilepsy meds that treat many different types of seizures. I would ask the Docs what type of seizures they believe she is having and what meds they are suggesting. I know how heartbreaking it is to watch a seizure happen and the feeling of dispair of not bein able to make it stop. Its especially hard when you have a child that has had a hard enough start in life without being dealt another blow. The good news is that most(75%) of epileptic children are controlled effectively with medication or ketogenic diet and are able to live their lives without many restrictions. Unfortunately for my son this is no longer the case and our only option is now surgery. He is booked to have a left side hemispherectomy at GOSH in feb 2010. This has an 80% chance of him being seizure free, and although its v scary theres no more choices left. My advice is to do your research and be as persistent as you can with the Docs. You know your child better than any professional and your instincts are normally always right. I hope you get some answers quickly.

Rachel

I have an eight year old son who at the moment has not been diagnosed with anything. Over the last 18 months he has had a series of fits for want of a better word. In the last 11 days he has had 3 alone. Each time I have taken him to the doctors to be told there could be a number of reasons for this and not to worry, I'd laugh if i wasn't so worried. the last time I had a different doctor and he has now arranged an appointment on the 2nd Dec at the hospital. I'm not sure what will happen or how long it will take to diagnose if it is epilepsy but then if its not what else could be causing these fits as he has not been ill for most of them so he hasn't had a high temp as suggest by the doctor could have caused it. He often complains he's teeth feel funny just before he has one I'm trying to learn more so I can be of more help for my son

HI, my 6 year year old son was diagnosed with petit mal epilepsy(absences) in jan 09. He was started on epilim and his behaviour has altered, very short fused and angry. We spent a week in hospital in August weaning him off the epilim as he lost alot of weight and became very aggressive and low in mood. He has been commenced on Topamax, he is now off the epilim and his aggression has about disappeared, he is alot brighter in himself. He still has outbursts but im wandering whether this is just a 6 year old boy!!!! The sad thing about coming off the epilim is that his absences hav returned, life is a real rollercoaster at the minute.

Hi, my 8 year old son had a seizure last Tue for the first time. He is a very normal and active boy who is very athletic.
This is what happened. He was on the computer with me when he hit his “funny bone" elbow on the chair. He was complaining for a while and suddenly he dropped from the chair and fell on the floor. When I picked him up I realized that he was stiff and he was steering at me but I could not get any response from him until maybe 30 to 40 seconds he blinked. Then I rushed him to the car to take him to the emergency when he started to come back. He told me that after hitting his funny bone there was a great pain then he starting feeling very sleepy and then he saw black. That’s all he can recall. He was confused and disoriented when the episode finished. Next day we did an EEG and they told me he has Epileptic discharges.
Could the impact to his elbow trigger the seizure? Will he grow out of this? Why does it happened now and not when he had sky high fevers when he was young or when he got 20 stitches in his head after running into a door? Marit

hello
my 3yr old son brody has a genectic disorder called angelmans syndrome and he suffer severely with many types of fits , from absences to full on body twitching,he even suffers severe laughing fits , 3 weeks ago, 1st july he had 3 fits in 1 and ever since he has been unlike his happy self (part of his syndrome) he has been biting, pulling hair, nipping kicking,etc, im trying to see his specialist but its proving to be very difficult, he his making life with him very difficult, our other 4 children are staying away from him, and he doesnt respone to being told no or time out like he normally would, im very worried that he is having lots of abnormal brain activity thats causing him discomfort so he is lashing out to let us know, theres something wrong. he cant talk which make slife so much harder as its all guess work with him. he is on 3 anti fi meds so far, very high doeses too, and when they get upped he disappears for weeks , its so hoorible to see him suffer, i just wish we could help him more. its so hard to comfort him when he is ripping at your face and pulling huge patches of your hair out

my five year old daughter has tonic clonic eplilepsy she took her first fit in march scary stuff she fitted for on hour and 45 min until they gave her dieasapine they had to give her 2 lots of the stuff.It was the worst thing ever to whitness my heart goes out to anybody that has eplilepsy and the familys that support them i have not had a good night sleep since it has happend like yourself it seems to be first thing in the morning when they wake up and they feel sick you just panick. The docters put my daughter onto carmazipine but she took a server alergic reaction to it so they but her onto keppra she has had 1 more fit since they did this but it was not as bad she was sick that morning thow so it seemed to relive the presure of her brain. But she has just had an mri scan done so me hope that it gives more answers. So dont worry your daughter is not the only one that fits for more than one hour have you had a diagonses of what eplilepsy she has got?xxx

Hi I had epilepsy, it started when i was 7 and finished when i was 12, docters said this was quite strange as most younger people who have epilepsy start at age 12 instead of finishing at age 12, any way the point is my dad walked out when i was 7 and soon after this i had my first fit, therefore my mum always believed it was due to major stress that i became epileptic but when i was epileptic i found it difficult to do things where i had to bring up my epilepsy like school trips ,certain sports and even sleep overs with friends.
But recently i have had many fits and i have been extremely stressed with exams and other things do you think its my epilepsy starting up again and do you think it can be caused by stress
thank you

Hi
Just wondering if anyone else has had the same thing or can give me some advice.
My son has been having seizures in the early hours of the morning. They started back in September 2008 we flew back from Spain he had a bad ear infection contracted in the swimming pool. He has his first fit at 4.30am two days after we came back from our holiday.
Then he had another one in December 2008, the another one in April 2009 and sinec then he has been having them almost every week. Its always between 4-6am. They are typical fits, but its as if he's waking and fitting, after he goe sback to sleep as normal until say about 10.30am then is back to normal.
We have had blood test carried out, EEG and ECG all normal. They are not temperature related its soo weird as they don't happen any other time of the day. I'm concerned a sthey have increased in number.
He is still only 2 1/4 and he has a nap during the day undisturbed.

Hi I am hoping someone can give me some advice and reasurance, my 6 year old daughter has had 2 seisures roughly 4 months appart both times she was admitted to hospital. the first time she was given rectal diazipam twice and the seisure lasted about 1 1/2 hours without recovery. the second time she was given rectal diazipam 3 times before she recovered the seisure also lasted about 1 1/2 hours without recovery. I dont know much about seisures but I feel the length of time the seisure last is very long and i have never heard of anyone else having a seisure which has lasted as long as my daughters I am so worried about her. The sisure has started both times after she has been sleeping, she wakens and feels sick, she then drools, her eyes are fixed and makes grunting noises, she then lost control of her bladder and then parts of her body went rigid this took about 45 mins then jerked violently on and off for a further 30 mins has anyone experienced something similar if so it would be nice to hear from you.

my beautiful daughter (11) is having seizures........

she was diagnosed with ADD two years ago we have been giving her ADD meds ( Ritalin, adderall) and now she is using concerta which works well... i asked her Dr. if these staring spells she was having were side affects of the concerta..... after explaining what the staring spells were like...... blank eyes, no response to touching, voice, or waving hands in her face, the Dr thought they might be seizures.... absence seizures..... the spells would last for anywhere from 10-30+ sec...... in talking to friends and family, teachers and couches..... they all said they have seen her zone out and not respond.....as have i many times...... the Dr started the processes of getting her an EEG do find out if in fact they were seizures.... this was all on a Monday 2 weeks ago in fact..... the following night my daughter was sleeping with me (thank god) and have full grand Mal seizure in her sleep...... i have never been so scared in my life!! the seizure last 3+ mins which felt like a life time! she was katatonic for about 35 mins after that and of course i called 911 and they were there to help her and myself thought the seizure.....i felt so bad for my daughter when she did come around.... all she saw were wires, equipment and men around her..... she was very scared! people who have seizures have no memory of having them so to wake up to all that.... spooky!..... because of this she got the EEG the next day she had 2 absence seizures while she was awake during the test and had quite a few spikes while she was sleeping during the test..... between then and now she has had many absence and one good sized peti Mal seizure where she did in fact walk out of her after school program and have a accident on the play ground (she wet herself)..... the teachers were there and helped her till she came out of it..... we are set to have an MRI done this coming thurs.......

the wonderful thing is she has no memory of any of these seizures...... the absence ones we feel she has been having for a couple of years........ to everyone one on the outside it just looks like she is stating off into space or day dreaming........ for her no time has pasted when she has them........ for those of you wondering.... between her dr, the neurologist and myself we feel her ADD meds have nothing to with the seizures.........

i think the biggest thing to me at this point is to read as much as i can..... and make sure her life is as normal as possible.......

if your kids are looking off into space and don't respond to you or anything else and they cant tell you what they were thinking about.... believe them and have them checked out!

B

hi Shirley, your grandsons symptoms sound very similar to my daughters. she was diagnosed with 'petit mal' epilepsy (or absence seizures) last summer at the age of 4. she is now taking medication in the form of syrup morning and evening and has recently started on a second medicine as well. we mix it with milkshake cos on its own she couldn't keep it down. i am having trouble getting much info about what to expect from the condition. her behaviour seems to be affected (lots of tantrums) but not sure if thats just how she is or part of the petit mal condition.good news from docs is most kids grow out of it before teen years. hope you find this useful SJ

Hi Vicky. Thank you for your reply. Its a comfort to know that there are people out there who understand what we are all feeling at this moment in time. Its brilliant that your son his been able to go seizure free for 8 weeks, every time we think my niece is free from them she has one and we go right back to square one again. My nephew was taken into hosiptal last week, as he had a virus and his temperature soared however he did not suffer with any siezures, which was reassuring as we were concerned that they could both suffer with Epilepsy. However, my niece then had 2 on Friday, which could have been down to stress, tiredness etc but we just don't know what is triggering them at the moment. I think thats the hardest thing as they just happen all of a sudden and you just feel so useless. She can't tell us how she is feeling as she is too young, i do think that she knows something is happening to her though as she becomes extremely emotional after and wants her mum. I just hope that the medication starts to control them soon as it feels like there is no light at the end of the tunnel at the moment.

My niece is 21 months old, and she was diagnosed with General partial epilepsy on New years Eve. She is on medication, and the dosage has been increased quite a few times since her diagnosis. Her seizures appear to be coming all at once in a day or over a couple of days at the moment. Originally she was having them every 4-5 days, but she went about 14 days without a single one, then on a Saturday whilst i was visiting her she started to show signs that she was going to have a seizure, she starts to twitch and you can just tell from looking at her that something is about to happen. Over the course of this particular weekend, she ended up having at least 9 simple seizures, and then on the Sunday evening she had a Febrile convulsion due to her temperature rising rapidly and she was rushed to hospital by ambulance. She stayed in for a day or so and then came home. Again she was ok for a few weeks, my brother said she had had a couple of absence seizures a few days ago however without any warning whatsoever she had another seizure whilst at the park with her Daddy, this time though she was not responding and again had to be taken into hospital by ambulance. She was in A&E for some time, as she was constantly having seizures from 3pm-6pm and was not responding. Luckily she managed to come round by herself, the Dr advised my brother that had she not come round when she did, she would have had to be put on a ventilator to do her breathing for her. She stayed in hospital overnight and came home on Wednesday. She is a lot better, although still knackered from the seizures and all the drugs she was given. Is there anyone else out there who has experienced similar seizures. As her Auntie I feel that i can only do so much for her, and my brother and sister-in-law. I feel so bad for them and wish that there was a "quick fix" for her. It feels like the minute you feel it is ok to relax and not worry as much as you normally would about her, something happens and then you are right back to where you started, with this feeling of fear in the pit of your stomach that you just cannot get rid of. I wish i could help my brother and sister-in-law but i feel useless, they live about an hour or so away from me, and about 3 hours away from the rest of our family. I would appreciate anyone who can help or give some sort of advice which i can pass on to them which way help them in any way.

My name is Jack im 16 years of ages had and eperleptic fit in 2003 last seen by the doctor in 2006 about a fit caused by a hot inclosed space.....no i am 16 legal to go in the army and apply for pervisional licence i am having problems......i went to hospital with an injury nad was speaking to a nurse that told me, if you think you have been mis- dignosed with eperlepsy you can go see a specialist that will cost money but have a letter or have it taken off records.

any body no any more information on seeing a specialist becasue i want to be a mecanice and go in the army cant be mecanice with out car licence cant get in army with eperleplsy.