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My wife who is a registered Nurse and I witnessed screaming,yelling, and verbal abuse used against a boy who is 6 years of age and who has had 4 brain hemorrages, and has Epilepsy Through out august2007 to December 2007 By a Special needs teachers aide. This was witnessed by many others. We reported it to the school system and they have denied the allegations and said yelling or screaming does not constitute abuse. There also was also some other forms of abuse witnessned by us. O ne occassion My wife observed the 6 year old being verbally abused, he started to salivate a lot, the teachers aide put her finger into his mouth and pulled his jaw forward and scream don't pinch me. My wife picked up the boy wiping the excess salivation, amd proceeded to calm the boy down, thus controling the situation and causing the boy to come back to a normal state of being. We have been ostrichsized for being a whistle blower,given limited acces to our down syndromes daughters shhool,and black balled. Although the Sheriffs report clearly states that yelling and screaming did occur it is not considered abuse. Our daughte subsequently was abused by the same teachers aide who was never transferred physically. All though a forensic interview of my daughter showed discovery nothing was done with that. My Daughter started to urinate and deficate shortly after her abuse in her clothing,We Brought her to Dr. Guy Crawforf to make sure that she was not sick.Keep in mind my Daughter had been potty trained for 3 1/2 years. The Doctor ran ervy test and ruled out any medical problems, but wrote in my daughts medical records that it was directly a proble she had at school. within a week of being out of school for a week during summer break, the urination and defication in her pantsstopped. Please let me know hoe screaming and yelling affects an Epileptic child with 4 brain hemorages and if it is indeed child abuse.God Bless, Jack,And Maria Scholnick.
Shouting and screaming at ANY child, whether they have epilepsy or any other medical/learning issues constitutes abuse. I guess you're from Scotland but in England and Wales children have the right to be treated with respect , this woman has no concept of respect and should not be allowed to work with children. The stress associated with being bullied and abused by an adult in a position of trust could have a negative effect on the health of any child.
I am a 15 year old who has photosensitive epilepsy and is on epilim chrono 3 tablets a day. I saw my consultant on the 8/12/08 and she said that we might try me without my medication. To be honest this is a big decision as my tablets are like my best friend. However coming off my medication could affect my leisure such as hobbies and maybe employment and driving in the future. I really, really dont know what to do as it is a big decision and every time i think about it my head spins in all sorts of directions i'm really not sure what to do. Could anybody give me some sort of advice of what to do.
My 7 month old granddaughter has been having seizures (or fits) for the last 4 months. Some times she can have a couple in a short space of time & then doesn't have any for a few weeks. She has been in hospital where they have run numerous tests but all were clear. They did say that this can happen & it may be something she grows out of when she's around 2. She hasn't been prescribed anything for them. On Sunday her parents video'd her having a fit, her body initially went limp and she went into a trance like state, this was then followed by eyes rolling and slight seizures. The whole episode lasted about 2 minutes and was very distressing. They attended casualty who took her temperature and said a paediatrician would contact her in the next couple of days. When she did she said she would see her at her next appointment in February.
I would like to know if anyone out there knows of any other babies as young as my granddaughter that's had these fits, did they last into later child hood or older and was they put on any medication?
We have a 19 month old girl. She had her first seizure in Feb08, she was in hospital for 5 days and had every test possible, EEG, CT, Bloods and urine, all returned fine. Her first Seizure started out with her arm going tense and making a tight fist, then led to a full on fit (whole body jerking violently). She mad multiple fits whilst in hospital nad it was put down to a febtile convulsion due to temperature. She had a repeat episoe in May08, not as dramatic this time but my wife woke in the night and went into her to find her drooling loads, this was followed by a seizure, she was admitted to the local childresn ward but released th enext day, again put down as febrile convulsions due to temperature.
Nov08 we had another seizure, she got up from her afternoon nap and was running around frantically had a high temp, and ten collapsed, she spent only a few hours in hospital this time, and again put down to a high temp.
Dec08 she fell over in the living room and banged her head hard and started to jump, all limbs flinching wildly, then she had full seizure. She was admitted via A+E again, and whilst in hospital for 4 days she has another 4 seizures, one of which was really long about 5 mins of vilent shaking and a further hour of slight shaking, she was administered Diazepan to control it.
Once again all blood tests where fine with nothing found. She was released. That was 15 days ago, since being home she has not been herself. She has many twithces throughoutt the day and what i can only decribe as extended blinks. Her personality has altered too, she is either Hyper or really quiet, this is not her.She has also taken to screaming out suddenly and inflicting pain on myself and my wife, i know children have phases that they go through but this is to coincidental.
Yesterday her twitches got worse and we called the hospital and they asked us to bring her to A+E and speak with the on call childrens doctor.
I got her up from her afternon nap and she was fine, a few twithches, but no more than normal. She was downstairs eating a yoghurt when she began to stare and woudl not alter her gaze, she then bacmae limp and lay on the floor, her eyes still fixed to the right. I stripped her off and took her temp (37.3), after about 2 mins she started to come to round from what was like a catatonic state, whilst in this state she could answer my questions ans was responsive.
Hospital said it was nothhing to worry about (try telling worried parents that though) and sent us home to wait for an EEG appointment. I dont hold out much hope of getting one soon though as its the wrong time of year. We are now considering a private EEG to get the ball rolling as we cant continue to live like this, waiting for something to happen and having to respond to it. We also have a 4 month old boy, who (touch wood) is fine.
This is a little differnt than your incidents but we are suffering the same agony of not being able to help our children.
Hi
My son is 2 and a half years old and had his first fit on 10th October 08, they thought it was a febrile convulsion, a week later he had another one, the consultant told me he thought it was epilepsy. Then a week or so later he had more, several in one day. He had a CT scan and that came back normal, they sent us to the Sheffield childrens hospital where they have neurological consultants. He had a MRI scan that came back normal (thank goodness) an EEG which showed he had generalised epilepsy. We were in hospital for a week. they put him on two types of medication and they stopped for just under two weeks. Fitting again we were back in hospital, his medication was upped and a new medication was introduced. He went for 2 weeks and 3 days until the next fit, back in hospital 15 fits on one day, his medication was upped again and we are now home he has been fine for 4 days. If and when he has his next seizures they will change one of the medicines. I believe its trial and error until you get the medication and levels right for your child. The aim is to be seizure free. My son has drop fits, and the tonic clonic seizures. It always takes time for him to recover and get back to normal sometimes a week or so if hes had a lot of them. I have contact and support from a great Epilepsy nurse and I contact her if has any side affects or seizures. We are in the process of waiting and going through this trial and error stage of getting the medication right. It is most worrrying. I have been looking on here to try and speak to other parents that are or have gone through similar experiences. I'm sorry I don't have the end of our story but it would be nice to keep intouch and see how you get on. All the very best of luck with your little girl. Vicky
Vicky,
I wanted to write because you and I have similiar experiences, in the age/type of epilepsy in our boys. We are still going through the trial and error of finding the right meds, but in the last six months we are finally see a dramatic decline in the seizures. However, a new demon has taken over - behavorial fits and outbursts. Some doctors say autism spectrum, the neurologist even speculates a mild retardation - and yes, he has some delays, but i can't help but feel in my heart it is something different - something directly related to the epilepsy. Would love to hear back from you - and everyone - about the behavioral issues that come with epilepsy - your diagnosis's, your recommendations, after 2 years, we still feel like we're living in that first fall day of seizures.
Jan
Hi, this is to Carol,
what you have described sounds like 'benign monoclonic seizures/epilepsy of infancy'. try googling it to see if the symptoms fit. my fifth child, who is 4.5 months old had her first two fits three weeks ago during church. we went to hospital and all the tests were normal. she even had an anaesthetic as I insisted on an MRI to rule out a head injury as I was on stage singing prior to the fit and was not sure if she had been injured while in the care of my other children and mother. since all the test were 'normal' and she had no fever for three days they sent us home christmas eve, and said come back if she had any more. i did not expect any more, but she has.... and we have just got back from hospital yesterday. I was greatly reassured by the temporary diagnosis (as above) but the dr was unable to provide any info, just a referral to a great specialist, who is squeezing us in next week. I met him in hospital the first time so am very comfortable.
from what I have read, diagnosis of epilepsy is difficult but the age that seizures start is an important factor. any medicinal treatment will be titrated to fit the situation, and its effectiveness may also give clues to the type of seizures your granddaughter is having. it is a slow process.
I have been encouraged to read that most of THESE infancy types of seizures resolve by school age, with very little damage to their intellect, but that does NOT mean a child should not recieve medication either, to control them. children with fits in infancy seem to have a higher incidence of a return betweeen the ages of 11 and 20 also, if you regard that, in reverse, children with fits beginning at puberty have often mostly been diagnosed with febrile convulsions earlier in life! i am not sure if it can be fully extrapolated that way, but it seems to make sense to me. Those children, I have read, that have recieved short term (a few years) medication in infancy also conversly seem to have less likelyhood later of the adolescent fits. I was very anti meds, due to the other risks, until looking at this info, and so will be accepting meds if the specialist recommends them for our daughter. I should mention that my husbands mother (baby's grandma) had exactly the same presentation of fits in infancy and from 13-19 years, had grand mal epilepsy, with medicine prescribed for the next thirty years), although never had a name for them in her day. we had no idea of her history until this happenned. She has had no meds for 15 years and no fits or fear of them.
i would encourage you and your grandaughter's parents to persist as they have done exactly the most positive thing by videoing the fit. continue to do so with any more, to give the dr in feb the most comprehensive picture from which to make a descision as they may all be different in some way.. note the times, frequency, pre situatiuon and following observations. for example after my daughter's first fit, she was disoriented and then slept, the second she could not crawl for 24 hours, but remembered us, and after the one two days ago, lost all use of her right arm for two hours, but crawled ok the next day and even cut a new tooth! But, she was woken by my screaming during that fit, and the dr's were able to diagnose from that that she could be conscious during one. also we have observed every occurance was when the other children had kept her up, or she had been woken to go in the car etc, and not gone back to sleep and was very over tired. so initially we thought as the fits were when she was falling asleep, that she was unconscious also. it was the most distressing thing to watch a long fit while she looked at me in utter horror, it is not a face you forget on a five month old. and I could not stop it for her. it all gave a picture that led to the temporary diagnosis. the future will reveal more about it and her condition, as will your granddaughters, over time. Persist, and do not be aftraid to question the drs.
in the end, I am sure that she and my daughter has been created by a heavenly father PERFECTLY, and this is part of His best plan, even though we cannot see all the reasons for it now. i am also encouraged, and wish to encourage you also, that my mother-in-law is a perfectly normal and wonderful individual, who now has the chance to really connect with her grandchild as she grows. she says she never saw a purpose for her epilepsy until now, except that it made her more emathetic a person.
Do not fear, your family sound very competant, and my heart goes out to you all. i hope you are all able to persist to a good outcome. remember to write down (with correct spelling) and google any terms the doctors give you and check out benign myoclonic seizures also.
blessings, Ries.
my freind who does not want to give her name has epilepsy and some times shes ill.+
Hi, my 3 yr old was diagnosed with epilepsy on Monday (12/01/09) and I am completely distaught. She had her first fit 22/11/08 at home and was rushed in by ambulance, whereby all checks came back normal. It was put down to a febrile convulsion. She had a second attack in school 05/12/08 and they called an ambulance and I met them at the hospital whereby all checks came back normal again. She was dicharged at 5pm and as we were putting in her car seat she went into another fit. We rushed her straight back into the hospital and they gave her dizepam rectally and it seemed to do the trick. After this they kept her in for obs and picked up a heart murmur. She went for an EEG on the 29/12/08 and we were told on Monday she has epilepsy due to abnormal electrical brain activity. She has been prescribed epilim liquid which we duly started that evening. She has to have it twice a day at 2.5mls to begin with, then upto 5mls 2 weeks later, reaching her full dose of 6mls 2 weeks after that. She had a fit on Tuesday evening which we duly taped for the hospital (I can't bring myself to view it). We have also been sent an appointment for a repeat ECG and a scan of her heart on 11/02/09. What i want to know is: why after 3 years this has suddenly happened out of the blue? What do people who have similar experiences think her chances are of ever being fit free? We were told that a lot of children do grown out of childhood epilepsy but nothing is guaranteed. Its all a matter of waiting and seeing. I've been afraid to send her to school since the 05/12/08. I have informed the school and they have said she can come back when we are ready to send her. Im really at my wits end and haven't stopped crying since we were told, I feel she has been handed a life sentence and that somehow it's our fault she has this illness.
Hi our lil girl Rebekah started dropping her head forward slightly when she was about 7 months old, it was kinda like when your feeling tired an your head drops for jus a second then u wake up with the jolt, we naturally assumed she was tired, she seemed ok and was growing up like any mainstream lil baby girl so we were a little concerned but put it down to my being over protective an maybe a lil paranoid, my partner Julie having had 2 children prior to. Then one day when Rebekah was nearly 12 months old my 13 year old step son shouted us downstairs in a frightened voice an said that Bekah had jus gone to the high chair and head butted it, not tripped or fallen but stood there holding the chair leg and "nutted it". That was worrying and very confusing but we kinda put it down to her being over excited and a lil hyperactive. 3 days later we were in the garden on the swing seat she got off stood up and it was like someone 5 times her size had just pushed her forward without warning, she went from standing straight up to flat on her face with both arms up behind her in about 2 seconds, she landed face 1st on the small concrete block wall and her eye swelled up like a golf ball. 30 seconds later we were racing down the road in the van to the hospital. They did all the basic stuff asked the awkward questions and gave her a very week painkiller, made an appointment to see the paediatric nurse, they did more tests an EEG then the big guns came out and the appointment was made to have the MRI scan an we finally saw the specialist who said it was half good half bad news. She has what is known as Myoclonic Epilepsy meaning head drop and its rare, that’s the good news the bad news is in over 30 years I’ve never heard, read, treated or known of anyone under the age of 5 suffer from it so treating it will be difficult she said. Difficult is not the word impossible is how its been so far over 4 years later and we are still changing the meds still looking at diff ways to treat it, in November it changed from Myoclonic to Polymorphic which in the specialists own words is about as bad as it gets no way we can cure it and controlling it will be even harder than before. Bekah also has absenses where she will stare into nowhere from 20 upto 60 seconds in her own lil world then jus come back an be her happy smiling lil self again, totally unaware of where shes just been. The one thing we have most certainly worked out is that how ever silly, over protective, paranoid or stupid you may feel about asking questions or for help and pushing with everything you can to get the doctors to do things when you really think that they know their stuff n they know best that’s not always the case because they may be brilliant people but don’t see that child on an hourly, daily, weekly or even monthly basis. Most children will react diff to the same meds some will make Bekah sick or constipated but work great with another person with similar symptoms. I must admit that the nurses, doctors, specialists and everyone in Newcastle involved with helping our lil girl have been amazing people, I have total respect for them all but most of them don’t like me because I do ask silly questions I do push them and make things happen I wanna know everything about everything like what if, when will, how will we know, what shud we look for, what happens if, what will you do next and so on.
When she was diagnosed at 13 months they said she over a 90% chance of growing out of it that went quickly on a sliding scale and is now at 0% chance of that happening but many, in fact, most kids do grow out of it (depending on the type) about 1 in 230 children in this country and 1 in 30 adults have some form of Epilepsy.
Its very very scary, its an emotional situation and Im sorry if I have in any way upset you, I pray your granddaughter will indeed grow out of it but please remember these 3 things, 1. You are never ever alone with this. 2. What the doctors and specialist think of you or her parents means nothing at all, just remind them as I do that the lil girl infront of them is THE most important person they will ever meet. 3. You stand your ground and even if you have to fight for every single thing, it’s very hard and very stressful but she is worth it.
Good luck and god bless.
Mark
Hi Aaron hope yer doin ok mate.
Well with regard to coming off your meds am certain your specialist wont take you straight off them they're much more likely to bring you off them slowly so any affects this may have will be noted and if your Epilepsy does start to get worse then they will be monitoring it and will be able to either put them back or maybe try a different type. There are as my lil girls specialist would put it "plenty of sweeties in the sweet shop that we can try" basically meaning that each person even with the same type of epilepsy will probably react differently to the same meds so if it works then great but if not then yer try a different 1. Am certain you've been to hell and back but always remember that the people looking after you and helping (nhs) are the best in the world but they constantly need you to tell them 100% honestly how your feeling, wat the meds are doing and if a certain med is or is not working for you. Never ever think that they want to try something new jus for the sake of it mate, they know thier stuff and as long as you tell them as many dtails as you can they can make a very professional and informed descission. Dont be affraid to ask them wat if, when will or any questions you have or tell them of any worries you have. At the end of the day they are there to help you not hurt you.
My advise is talk to your family, talk to mates or people that know you an know about you having epilepsy ask them if you seem different, better or worse at certain times of day or after certain activeties. My daughter's 5 and has no seizures at all when shes ill with a cold or an ear or chest infection but they come thick n fast if she is over excited so her nightly meds are slightly less and a little different than her morning meds. Maybe you could start by reducing your nightly meds if you have them or try taking half in the morning, half at nite before bed and slowly reducing them that way. The absolute best advise is always always talk to and listen to your specialist they cant make you do it but remember that thier doin it for you not for them, you can be certain they will always be 100% honest with you so ask them questions, how ever silly or daft or non important yer may think they sound just go ahead and ask and see wat they say.
I wish you all the best of luck mate, take care.
Mark
this is for michelle hello i am mhairi i have 2 children both with epilepsy. My daughter is 8 and my son is 6 both got diagnosed with epilepsy when they where 3. My daughter was prescribed medicine and she takes it every day and her epilepsy is controlled really well. As for my son he has been on medicine but we are really struggling to control it. He has been having regular EEGs because there is a lot of seizure activity in his brain, his medicine is recently been changed and he is starting a 2 week course of medicine on Monday on top of his anti-epileptic drug that he takes everyday and another EEG on thursday. I just want say that this is not your fault and they will be able to get it sorted out. I know how terrifiying it is to watch you child when the are having fits and how helpless you feel, but you just get throught, you have too. Both my children go to school they love it, it gives them something to look forward too. This not a life sentence, my husband has also got epilepsy and it is well controlled, with epilepsy nothing is guaranteed just take one day at time, my daughter is ok but my son is struggling but i have a lot of faith in my doctor and with us working together my son will be ok and so will your child. Just remember this is not your fault.
Michelle
This is not your fault, I have felt all the same emotions as you. Its such a shock. This is a really difficult time but you will get through it and your daughter will be fine. My son is 3 in April and was diagnosed with epilepsy in Oct 08. We are trying different medications, he is on 5 at the minute (but we are weaning him off 2 at the moment) I, like you have found the situation very difficult and have been very tearful thinking when will things get better. I felt I needed someone to talk to who had gone though this and come out the other side.
My son is currently doing really well, he has gone 3 weeks since his last seizure and is back to his normal rascally self, hes back at pre school and swimming. I don't know how long this is going to last but I think time will tell. We have a great team working with us who are aiming for zero seizures. One thing we are doing is making sure he gets a rest in the afternoon, he sleeps for about 2 hrs. I don't know if this is stopping him fitting but I feel its got to help him.
I hope my message helps you, I'm sure they will get ontop of this for your little girl. I wish I could give you a big hug.
Take care and best wishes
Vicky
Could his behaviour be related to the medication he is on, if he was ok before maybe its not right for him. Hope all is well with your little boy. Vicky x
Hi, this is Michelle who left a message on the 16th of Jan 09. Thankyou to Mhairi Orr and to Vicky for their response and for their input. My daughter hasn't had a seizure since the 13th of Jan 09 and we're keeping our fingers crossed. The longest she went before was a little over 5 weeks. I think I am over the initial shock but I don't think I have come to terms with her condition yet. Thats going to take some time. Inbetween seizures she is her normal happy, cheeky self, which makes it all the more painful. I have been given tremendous support from strangers like yourselves. but so far I feel the NHS has let us down, as we have had no professional support whatsoever. I have contacted my daughters health visitor who is paying me a visit on Monday coming, so I am hoping she can give me the professional help I desperately need. Thanks again for ur messages I really appreciate them. Incidently we are hoping she maybe returning to school next Thursday, we have a meeting with the head and her class teacher.
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.
Good Afternoon to you all, my son who is now 5 has suffered from Epilepsy from birth, we first noticed the epilepsy from around 3 weeks old, it was as if he had trapped wind and constantly "jerking", from the age of 5 months we had the diffinitive diagnosis that he had epilepsy following all the CT and MRI scans, they could just about see the area of the brain that was effected. In the past five years he has been on in-excess of 15 medicatiions, none of which has "solved" his epilepsy, some have helped but none have worked to be fit free, during the last year alongside his typical focal seizures with up to 13 episodes a day; he is also experiencing an increased number of drop attacks which on average can be up to 20 a day, which are not only proving to be very debilitating but causing him great harm, for me and my wife the hardest thing for us was not knowing where to turn for help and support and the feeling of being very much alone, but with the help of our two local hospitals and a very dedicated team of consultants we kept going, we have now been told that medication will not solve his fits and the only option for him his surgery, which brings up its own worries should we shouldn`t we...... but we need to be mindful that this is for my son and for a better quality of life for him, I can only urge that all parents of children with suspected epilepsy is to keep battling for your child and keep pushing - I know me and my wife (and my other two sons) are so much more knowledgable in epilepsy and shuold any parents / carers need any advise or support woulod only be too willing to help if need be,
My 21 month old grandson regularly has vacant phases where he appears to be thinking or daydreaming. He will stand transfixed and does not blink. Calling his name does not bring him back and even clicking fingers in front of his eyes do not make him blink and we have to wait for him to return! He is always fine afterwards and carries on as though nothing has happened. These "vacant" periods can last seconds or more recently one lasted approx 3 mins.
He recently had a very restless night and at one stage was boiling hot, he awoke with a marked face and we suspect he may have had a seizure in the night.
His father`s brother has serious epilepsy and I am wondering if he has some form of the same?
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.
Kerri. I know exactly what you are feeling, we have gone through a similar thing with my son. We have been in and out of hospital. His worst day was 16 in one day. It takes time to get the medication right, this is a very difficult time for you all but it will get better, they will get on top of it. My son has was diagnosed in Oct 08 and at first it seemed out of control but he has gone just over 8 weeks fit free this is the longest he has gone since he had his first fit, he is well and happy and doing all the things he should be. There is a light at the end of the tunnel even if you can't see it at the moment. One thing we have tried to do is get him to have a sleep in the afternoon i think this has helped him, it certainly helped after he had had a number of fits. If I can be of any more help let me know. Best of luck to you all. Vicky x
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 daughter is 13yrs she has been having fainting epsiodes for five weeks she has up to ten a day every day since they started she has been admitted to hospital on three occassions but she has been told these are postrual drops by one consultant and then seen by another consultant that it is stress she has eeg awaiting results ECGheart tracer normal and will be having a heart scan on 23/3/09. i have been reading some other peoples comments and some seem simaliar to epliespsy but this seem to be rule out but i not convinced anybody know who i can talk to get some answers
Have you tried Pyridoxine - its a vitamin tablet. If not look into it.
Regards
Vicky
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 my name is Christine and i am wondering if any one has any knowledge of children or adult fits relating to water. Our grandson has had fits nearlly all his life he is 7 years now, and 2 of them have been serious and he has had to be ventilated, but lately they seem to be water related accuring when he is in the bath ect has any one any information on this. Christine.
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, has anyone any information on childhood fits that accure in the bath. Christine.
Chereise, your case is very similar to mine, my son started having seizures in his sleep on 3rd jan 2009, just before his 3rd birthday, he had another one 15 days later, he was started on the epilum medication and did not have another seizure for 7 weeks, we went to jamaica on 9th march and the night we got there he had a 1 min seziure in his sleep again , this was very scary for me as there was no ambulence or medical attention nearby, thankfully it only lasted about 1 min, he had another one while we were away, 12 days later, again in his sleep and lasted a short time, he had another one 12 days after that (last Thursday) in his sleep aain at the childminders, his Ct was normal but the EEg show that he has excessive activity to the right hand side of his brain, I am awaiting results of an MRI and he will be having a sleeping EEG next month, I am on my own with him and this is the most distressing thing that u can imagine, I cannot cope when I see it happening to him and I would give anything to make it stop, and yes I think, why after 3 years would this just start "bad luck" the hospital say. if there is anyone else that can give me any advice, PLEASE DO, I just want it to stop. I dont sleep, almost ever as I have to watch him all night in case it happens, he has been in my bed since the beginning of the year as I will not put him back in his own room, our lives have completely changed.
This is in reply to Michelle Berryman - Have you had a look on the Muir maxwell trust webpage? this trust has been set up for children like your son who suffer from seizures at night. There is an email addres which you can send an email to with your sons name, age, medical history and they will send you an Epilepsy alarm voucher which means you can have peace of mind when your son is asleep in his own bed. Go to the website and you can read up about it, and request one for your son. There is also a small advertisement which shows you how it works.
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.
Hi Emma,
Seizures generally stop after a short time with no problems. However, sometimes seizures do continue for longer. If a tonic-clonic (convulsive) seizure lasts 30 minutes or longer, this is classed as a medical emergency (status epilepticus). In this case, treatment such as rectal diazepam would be given to stop the seizure.
It is important for people with epilepsy to get the right treatment, to stop seizures or, to reduce the severity and frequency of seizures. An epilepsy specialist would decide what treatment is best for their patient. Details about treatment of epilepsy can be found on our website.
If you would like to call our Epilepsy Helpline 0808 800 5050, you can discuss any concerns you have about your daughter's epilepsy with our trained epilepsy advisers, in confidence.
hi i was just on this site and was reading your email my son delvopled eplepsey and he had a EEG done and showed he has frontal elplepsy and the hospital put him on elplim it stopped the grand mal sezuries but become very hard to control with his bad temper and after a coulple of months after being exculded from primary school at the age of 6yrs old he was still haveing absences the hospital put him on 2x 15mg of topermaite two times a day and the eplim e now his temper is better but the problem does still arises when he late haveing his morning meds they say now that this could be part of the eplepsey .hope this any help
please feel free to email me
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.
Help required!!! My daughter had her first seizure 16months ago, was put down to febrile then not very long after had yet another where she was taken to a&e and docotor there decided to refer her to the paeds!
While waiting for the appointment she continued to suffer from seizures last anything from 30seconds to 2minutes, eyes rolling wetting herself full limb jerking. We went for our first appointment and had eeg all clear nothing there, blood tests ecg also all clear. They put on her epilim saying it was tonic clonic seizures and on quite low dose.
We were seen again 3months later no improvement still once or twice a week up`d the dose. Then again another appointment keep using medication.
Then a breakthrough or maybe not last appointment seen different consultant rather rude to me treated like i didnt know what i was talking about made me feel like i was making it all up and really made me feel upset, she has decided to do a 72hour monitering which you can just be sure sods law that nothing will show up she wont fit!!!!! Rather stressed about going in dreading having to see consultant again, not looking foward to three days confide to hospital with rather hyper active three year old.!
Any other experiences or words of hope would be gratefully appreciated!
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
my daughter was behaving very similar and at 6yrs old was diagnosed with absence seizure epilepsy. The good news - most children with this type grow out of it. But maybe not till their teens. Till then medication and endless hospital visits to review her epilepsy.
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 Emma
Just read your post, am going through the same as you, and wondered if you wanted to get in touch to talk about it? Am finding it very difficult getting straight answers from doctors, sometimes talking to others going through the same stuff can help.
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
hi mark, my son zakk is 18 months old and was diagnosed with generalized tonic-clonic and abscence seizures and just a few weeks old, i would definatly consider getting the private eeg done if it means getting them in sooner. i dont mean to dampen your hope, just want you guys to remember (as in zakks case) that sometimes eegs, cat scans, mri's etc. do not show anything at all and they cannot explain why the child is having these episodes. your little girls last episode where she stared of sounds like they abscence seizures my little guy has. question... did they put her on any daily medication? because her aggression and other abnormal behaviour could be a side effect of the meds, zakk has many side effects from them and i know he gets very aggressive for about a two week period after having diazapan, hope this helps, if you guys have any more questions or just need someone who is in the same boat to talk to my email is beckie_drew@hotmail.com.
beckie
My boy George has just been diagnosed with Absence Seizures. We noticed he was stopping for a second or two and was putting his eyes up, so we made an appointment to see the doctor. We were referered to a consultant and he then has had an EEG.
We have had the session with the consultant. we initally didnt want to give him any medicines beacuse we didnt want to give him any side effects. when we were talking to the consultant we changed our minds and now we have changed them back again.
So now we've decided that we will keep a check on it and if the moments get worse then we will ask the consultant to re prescribe the medicines.
is there anyone out there whos had a similar experience and has any opinion on this???
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
This is a message for shirley. My son is 7 yrs old and has just been diagnosed with absence seizure epilepsy. We have been told that it is quite common and children generally grow out of it. He has been prescribed medication which we will start him on tonight. His seizures would be the same as you have described and I would suggest that you speak to his parents to arrange a check up for him. It is quite frightening to see but I have been told that it is a mild form of epilepsy. Try not to worry too much. Best of luck. X
Hi i have a three and 8months son who at 1years old started having rigals through tonsillites when he was sleeping,it happened couple times after then nothing till last august. He had three fits in 4days 2 were in his sleep one was in a busy shopping centre whilst he was a wake jerking bearing in mind only one of these he had a temperture i suspect he been having more in his sleep but i never knew .then he had his adnoids out and grommitts just before last christmas.he has since had fits every three months it seems to be a pattern. always asleep he even has small ones which u wouldnt notice unless u hear the noise he makes drs havnt told us what they think yet as they still investigating. i recently took him to a sandy beach weather was windy he played in a pool of water for about 10mins on the sandy beach his lips hands feet was blue and his hand looked locked?? . he has had ct scan and sleep eegs which were normal we are now waiting for a mri scan and they are also doing gentic chrosome testing and lots of blood tests. they are worried bout his head size as it is 54cm and for his age it is on the highest growth for his age his head is too big. they have called it macrephaly. now in regards to his behaviour he spins he constantly watches things over and over , he is very routine he has obssesive behaviour he does the loud scream noise, it takes him a long time to interact with adults he gets on better with special needs children plus he is very very hyperactive he spins with the wind at parks in public . he is very demanding and very touchy , he dry in theday stilll has accidents at night he wets . he is also delayed iv now been to see a dr about this and its looking like autism i love my son with all my heart but just wish i knew what was going on and how to deal with this is anyone else going through this or can they give me any advice please .
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 Emma, My daughter 1s now 13 and has epilepsy when first diagnosed we brought her to hospital when she had a fit usually about 9 months apart but they were very severe fits and at times lasted for up to 3 hours mild shaking rapid eye movement slurred speech etc. We decided one night that hospital was more stressful for her and she fitted for 4 hours a dr came out and did nothing. Anytime she was in hospital they didnt tell us much except they had used medication to bring her round. We were left int he dark for about two years until i demanded that someone help us. Eventually i was given rectal diazepam to administer at home which worked brilliantly very scary at first but you just had to do it. Now she is 13 and we give her buccal medazolam same thing basically but you put it into the cheek and usually brings her round after 5 minutes if not we give her second dose which we hope not to have to do as she feels very sick and out of it for hours afterwards. Before either of these medicines we were really struggling, she is on antiepilepsy med but have been told that nature of damage to her brain means her seizures will always need medicated, it has taken time to get my head round this as she is at special school and if she does guides or clubs etc i always have to go to as noone insured to give her medicine if she fits. She also has cerebral palsy. She used to loose control of her bladder and other accidents not anymore as the seizures only last until we get the medazolam into her asap. I Know how you feel cos its really terrifying having a child with prolonged seizures. I would suggest you get in tough with your paediatrician to be given help on getting buccal med to administer yourself as long seizures are not good. Hope this helps and all my very best wishes.x
Hi
I have a 20 month daughter, who from lack of oxygen at birth, suffered brain damage - Cerebral Palsy. She has just recently (as of May this year) started suffering fits. In her case, her first 2 fits were atypical of fits, and had disappeared by the time we reached the hospital. But her next 2 fits were 'obvious' fits where she was convulsing. From what i understand our epileptic doctor to say, fits where the child goes into a trance or is unconscious (eyes may be open or closed but they are unresponsive) are the 'bad' fits. If they tend to last over 1/2 hour, is another thing to watch out for - then they recommend to usually give an emergency med like Diazapem if fit goes on over 5 minutes. The med should usually stop the fit, but if it continues over 10 more mins then you need to ring for the paramedics. And basically we have been advised to put her on anti-epileptic medication to prevent the fits - only prob with these meds are they are a hit-and-run affair - they have to be tried in small doses to ensure no side effects, suits the child, etc. We were to travel abroad, and she had a fit 2 days before and the doctors said she was unfit to travel - though what i've read says that there is no indication that flying in any way triggers fits! Oh well... I hope the best for your daughter. And may i suggest you need to put your foot down, and be more insistent over her care, ask a lot of questions, and let them know you are not happy with being on hold for so long - its time some serious complaints are made!
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 i have a 3 years old daughter suffered brain damage cerebral palsy.she has just recently(oct 22/09) start suffring fits.in her case her all 4 fits start after her day time nap for 2-3minuts.i have seen her doctor this week and reffered her to EEG.i'm still waiting her appointment.But the doctor suggest if she have fits again she must start have her med, even if before she see EEG.But i want to know first what type of fits she has.then she can take the right med.What do you think,please anyone can advice me!!!!
herom