Good evening to you all,
My 3 year old daughter has been suffering with seizures since she was 2 years old. Ellie has been having on going tests for the past year and have brought to our attention anumber of health conditions (Ellie's story can be read here http://www.elliesepilepsy.blogspot.com)
However 3 months ago Ellie was diagnosed with Epilepsy. Ellie continues to have seizures weekly. It is all so new to me and my family. I am trying to find out as much as I can about the condition, what Ellie goes through when she has a seizure. Obviously being only 3 the only thing Ellie can tell me after a seizure is "Mummy I just had a fit".
I want to know what triggers it, what side affects the medications have?? All information and comments will be greatly received.
I have set this blog up in an effort to find out more about Epilepsy, it's effects on behaviour and anything else related. In a bid to help us and her better deal with Epilepsy and it's effects on everyday living, I intend this to become a valueable resource to anyone else affected by the condition.
Please view this site and please leave any comments and pass the link on to your friends,
Hi there and Welcome to HealingWell!
Epilepsy is not as scary as people think it is and does not have to be the end of the world. When you say she has been diagnosed with Epilepsy, do you mean Juvenile Myoclonic Epilepsy? Also, what meds does she take? Different meds cause different side effects. Are there any specific questions you wanted answering? I could write an essay on Epilepsy with what I know, but its no good if you know half of it already! lol
I will do my best to answer any questions you have regardsing meds or epilepsy in general, as will anyone here on the board.
Thanks for the response.
To be honest I am not sure what Epilepsy she has been diagnosed with, after 2 normall EEG's and a normail MRI scan Ellie's was beginning to fit more frequently. She had 18 seizures in 3 weeks, some are just her right hand goes numb, her right side twitches (her face and hand) some times she falls over, some times her whole body jerks, some times she goes blue and stops breathing.
The 3rd EEG showed an abnormality and then they said she had Epilepsy and that was it.
They started Ellie on Tegretol, but that made her really tired, by 3pm she would fall asleep on the sofa and I would carry her to bed and then she would not wake til around 6:30am the next morning.
Being only 3 this caused a serious worry to me and the consultant changed her medication to Epilim.
Ellie is now having seizures which seems like once a week but she is having 2 or 3 in that day.
Since starting the Epilim, Ellie has become very challenging her behaviour is disgraceful.
I know children will be children, but I am not sure whether it is a side affect or whether she may have ADHD???
How comes the seizures can be so different all the time?
Do they ever get the medication right?? I thought the idea of medication was to stop the seizures??
Ellie seems to have a seizure when she has had a lack of sleep! When she gets excited!
Then sometimes there is no apparent reason for the seizure.
I am just totally confused, I know its not the end of the world but it is scary!!!
Especially when she stops breathing. We have been addmitted by ambulance 5 times this year.
Although the consultants say Epilepsy is not dangerous every one knows that when your brain is starved of oxygen it can cause damage!!
When should you call an ambulance??
On monday Ellie was with family and she had 4 seizures in the end they called an ambulance and they took her to A&E for all the normall tests, blood sugars, urine only to see that nothing was wrong.
Sometimes it is awful we end up in hospital and staying and Ellie bounces back and I worry that she will pick up more in hospital and the best place to be is at home!!!
My partners uncle has had Epilepsy since he was born and he has suffered some many seizures he now has brain damage he still has at least 1 seizure a week he is on a hoigh dosage of medication.
SO obviously this is a worry to us.
Ellie has 2ml of Epilim morning and night and I have been told that this is a low dosage.
I will do my best to answer all your questions for you... so here goes!
Epilim is not a common drug of choice these days. 5-10 years ago it was quite popular but it has moved to one side for more popular drugs such as Tegretol. As far as I am aware, there are no behavioural side effects to Epilim (Sometimes called Sodium Valporate I think) but I dont think it is particularly great for children.
"Do they ever get the medication right?" --> Thats a cracking question. Sometimes it can take 4 or 5 different attempts to find a med that works. I was one of the lucky ones, Tegretol worked for me straight away. Lamictal is another AED (Anti-Epileptic Drug) that is quite popular at the moment. Sometimes meds will not competely stop seizures but will make a great improvement. If you feel that the improvement is not adequate or that the meds are not working, it is important that you speak to ellies doctor about this. As well as single meds, you can combine them to give extra 'cover' but i am not sure if this is a recommended course of action for children. (Perhaps something to bear in mind for the future)
Epilepsy is different for different people at different times. It differs because the brain is so complicated. My seizures are all pretty muc the same as mine are Grand-Mal seizures (The stereotypical seizures where people collapse and shake). That covers most of the brain and therefore you usually get the same response. If the seizure is more localised (only a small part of the brain is affected) then, the effects can be different with the different regions of the brain.
You are right to be concerned about the brain being starved of oxygen and that should always be a consideration when you are with someone having a seizure. As for when should you call an ambulance... to start with you will probably call them many times but as you get more experienced at dealing with seizures you will find that you can care for ellie yourself. If her lips are blue, if she stops breathing, if you have any concerns at all... ring an ambulance. They person on the switch board will talk to you and help you cope until the ambulance arrives.
One thing that many epileptics find frustrating is when the epilepsy does not show up on an EEG or brain scan. It is frustrating too for the neurologist and it can make diagnosis harder.
I think I have covered everything that you wanted... if I have missed anything or your think of anything else, please feel free to ask. There is no such thing as a stupid question if you dont know the answer.
All the Best
Thank you for the welcoming pst it is much appreciated.
Ellie was knocked over before her 2nd birthday and cracked her head open on abrick wall and had to have her head glued back together.
Also when she was 4 months old she fell off the sofa and had concussion and was rushed to hospital so I am always wonderining if any of these 2 things have caused Ellie's under-sized pituitary gland.
Obviously we can always wonder but we will never know the true cause.
I do cross my fingers that Ellie will grow out of it, but Ellie is so brave and she deals with it so well and so must we. At the end of theday she is 3 years old and has her life ahead of her and we have to deal with each day as is comes.
If she gets to 17 and is still suffering with the seizures then there will be more obstacles in her way, like going out for a drink with her friends, getting certain jobs and driving.
As you say its not that scary and I just have to learn what I can for Ellie and be here for her.
Thanks for your advice it is much appreciated.
Thanks for the detailed response every bit of information is very much welcomed and appreciated and I will take it all on board.
If I have any more questions I will be posting thank you.
Thank you for the response.
I am sorry to hear about your daughter, I thought we had a tough time with Ellie I can understand your pain too.
Touch wood Ellie has not injured herself when having a seizure. She has fallen few times and hit her head but there have been no bruises or broken bones.
I heard of a friend the other day that told me she has broken her back 3 times as she has fallen when having seizures.
That is a terrible thing.
I wish you and your daughter well x
I do think you need to start making a noise regarding the treatment you are getting and I understand you not wanting to incase you get less help, but you can be forceful without being rude. If you are rude, then people will not help... if you are just being proactive, they are more likely to help. It may be that they dont know what kind of epilepsy she has (although I suspect Juvinile Myoclonic) without further testing. That said, its no good if they then dont bother doing the tests! I definately think you need to get the sleep EEG done. Can you think of anything that might be triggering the seizures? Something that is common to the majority (not neccessarily every one but 80%) of the seizures? It could be a food/drink, a change in temperature, a toiletary(sp), a light pattern/colour, stress (although unlikely I would have thought) or an animal. Those are just the things I can think of off the top of my head. It might be something different.
Let us know how you get on, on wednesday
Good Evening Darren,
Thanks for the reponse.
Can you please explain what Juvinile Myoclonic is please???
I am going to insist on wednsday that Ellie does have a sleep EEG done, because we do need some answers.
I do worry when she has a seizure what if this time she stops breathing and she doesn't start again, it is so frightening.
Although the seizures Ellie has when she goes blue and stops breathing are normally associated to when there is a viral infection, like this week, Ellie's little sister has had a horrid cold and it was viral, normally it is when I have a cold sore.
Can epilepsy seizures be caused by viral infections??????
I wonder whether this is something completely different and not Epilepsy at all!!!
Not sure but I know these seizures are when Ellie contracts a viral infection.
Although the other episodes when Ellie stare (like she is day dreaming), or her right side twitches, I think these are Epilspy.
They normally seem to be when Ellie is stressed (when I say stressed when there is alot going on around us)
If Ellie has a lack of sleep, and sometimes when Ellie is playing and gets very excited!
Last night she was taking her anitibiotics out the fridge, the nect thing I heard was crash, bang and Ellie was lying on the floor twitching all down her right side. This lasted about 1 minute and a half, and then for 5 minutes after she had no use of her right hand what so ever.
These are the things I notice more when she has a seizure.
It is so heart breaking, I need to be behind her 100% of the time, she has only been to school twice this week and had 3 days off. I feel her schooling is going to suffer.
I will let you know what happens on wednesday I know for sure they are going to change her medication.
Another thing quickly, we are going to Disney Land Paris for christmas and I need to get travel insurance can you point me in a direction of any companies that provide insurance for people with Epilpey because the high street stores have been rejecting me.
Myoclonus (or myoclonic seizures) refer to twitches or jerks where the muscles contract and relax (Positive Myoclonus - Contraction & Negative Myoclonus - Relaxation) causing the body to look like it is shaking. The seizures you are describing where Ellie twitches could be myoclonic. (Juvinile simply refers to child-like). As for epilepsy being viral... epilepsy itself is not caused by a virus but seizures can be caused by virus' and it could well be a trigger. If you suspect that it may be a trigger for Ellie, this is something you should tell your doctor as I think it has a bearing on cause.
Thats a great help, the doctors do know about the viral thing I mention it every time I go to the hospital I am going to start speaking a bit louder this week.
It's monday morning and we have all just got ready to take Ellie to nursery, however on the journey to school Ellie begun to have a seizure in the back of the car in her car seat.
It was right sided again and her hand was twitching, it lasted for about 3 minutes or so and her eyes were staring to the right side, she couldn't communicate with me.
So we are back home again now, I can't send her to school now, her eyes are all glassy, she had no feeling in her right hand and now she sounds like she has the worse cold in the world.
I don't know where it came from, she was absolutely fine, 12 hours sleep, no stress and the cold that she did have seemed to be disappearing.
It really is affecting Ellie;s every day life.
Thanks for the message.
I MADE A MISTAKE.....
Ellie's appointment is next wednesday 14th Novemeber, so will have to wait another week.
I will be firm with them though and tell them I want more done for Ellie.
My family all keep saying we should get a second opinion, but me and my partner Lee are just doing what we feel is right! We feel she is supposed to be in the best hands and they are doing all they can for Ellie, but if I am honest I don't think they are.
Why is Ellie just being left to try and find a right medication, surely all these seizures she is having is not right???
I know the medication don't work overnight bu we have tried 2 now and they are not controlling the Epilepsy.
I feel she needs this sleep EEG to find out what exactly is going on, because I am not 100$ convinced it is just Epilepsy.
I know Darren said Epilepsy seizures are not cause d by a viral infection and half of Ellie's seizures are caused by a viural infection.
So we really need to know, what is going on.
We are going to Disneyland Paris on the 24th December it is a special treat for the girls especially Ellie after all she has been through.
But I didn't realise that I was going to have a problemm with travel insurance.
I have rung so many now and hitting a complete blank!!!
I even called ACE who are on the Epilepsy action website and they will not insure Ellie because her Epilepsy is not controlled.
I have found one company who have quoted me £850.00 I nearly fell off my chair.
Not only has Ellie got a condition that is affecting her every day life but she is being peenalised by insurance company's I am so angry!!!!
These companies are just out for taking your money!
At the end of the day there is no way I will travel without insurance for Ellie I will keep searching in the hope for a reasonable quote.
I completely understand what you mean about travel insurance... my epilepsy is controlled and has been for some time (2 seizures in about 3 years) and I still get penalised. Unfortunately, it is one of those facts of life. Epilepsy makes Ellie a higher risk and therefore it costs more.
I think you might have mis-understood me regarding viral infections... Epilepsy itself (the disorder) is not caused by a virus however the seizures can be brought on by viral infections. In other words, a virus can make it worse (i.e. cause a loss of control) but when you take away the virus, you still have epilepsy but probably much better control.
As for the meds, there are many more AED's out there and of your appointment is next week, the doctor is unlikely to change anything as it will not have time to change before you see the neuro. Ask the neuro about changing the med if you are not happy. Sleep EEG's are very good and should give you a clearer picture.
Let us know how you get on
I am sure it will help and thank you very the suggestion.
My uncle said the same to be honest adn said that he had heard something on the radio about someone in the same situation as myself. But he couldn't remember what charity it was that the family found help and advide from.
But I will check it out.