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General health

Worried sick about epilepsy

27 replies

girlie1 · 03/09/2006 10:29

Hello everyone I'm new to the site but hope someone with similar experiences reads this.
I have one adorable 4 yr old girl - result of IVF,horrendous pregnancy - lost twin, hospitalised twice, emergency c, prem, you name it - and she started having odd turns last autumn. Strange hand/arm movements, moving her mouth, staring and being unresponsive throughout. An EEG was normal and it seemed to go away but this summer we started seeing more episodes and some different types. These include walking around in circles moving arms etc, sudden jerky movements whilst grimacing, hand wringing etc. They don't last long (10-15 secs typically) and can happen 4/5 times a day or not at all. Usually its when she's tired, under the weather or not absorbed in a task - so often during meals as she is a tricky eater who often can?t be bothered with it. In every other way she is normal, bright as a button, incredibly confident and social with loads of friends and a busier social life than us (sound familar!)
We are waiting for a sleep deprived EEG which I dread - as she doesn't need much sleep its going to be a looong night for us keeping madam up and amused until 1pm the following day when we go for the test!
We are worrying so much and wondering whether to go private to pull the test forward - one imagines all sorts including other brain defects (caused by the horrible pregnancy or masses of scans I had) or worsening epilepsy if thats what it is.
I realise this may seem mild compared to much worse things many parents have to face but they are all so precious and it would help to hear of any similar experiences. Anyone know of a good Paed Neurologist (she's just under the local Paed at Kingston Hosp). Anyone with a child with diagnosed epilepsy on the drugs?
Eternally grateful for any info at all.
Thanks so much!

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edam · 03/09/2006 10:46

Girlie, the National Society for Epilepsy and Epilepsy Action are great sources of info and advice. Think NSE is www.epilepsynse.org.uk but google will find both.

I developed epilepsy as an adult, so no direct experience, but would highly recommend seeing a neurologist with an interest in epilepsy (not all of them specialise in epilepsy). I was under Charing Cross (Hammersmith NHS trust) in London which is a tertiary centre, so real specialists. Lead consultant is Dr Shakir. Excellent care. Push, push, push your GP to refer your dd to a specialist, don't take any messing around on this. It makes a huge difference. Epilepsy is complex - every individual is different and there are dozens of drugs to choose from, if that is the route to go down with your dd. What suits one person won't suit another.

Finally, if this is at all reassuring, my epilepsy is perfectly controlled by one drug and doesn't affect my life at all (except I have to be careful to get enough sleep - lack of sleep is a trigger for seizures). I have a good career, a healthy ds, and a generally normal life. You wouldn't know I had epilepsy unless I told you.

HTH

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edam · 03/09/2006 10:49

Also, IME, epilepsy is far more distressing for the people around you than it is for the person with epilepsy. Because they see what's happening while you are blissfully unaware of it. So it's harder for you than it is for your dd, I should imagine.

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edam · 03/09/2006 10:50

Oh, and sometimes brain scans/ investigations don't show up any obvious cause. Epilepsy is bloody mysterious. But it can be treated.

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munz · 03/09/2006 10:55

hi I don't have eplispsey, but my SIL has it, she's on some medication etc and it seems hers is brought on with stress & Worry, althou in the 7 years I've known her she's only had one fit the night b4 her driving lessons.

with her treatment I know she's under the royal marsden, (she's from hounslow) she feels the care there has been excellent, afaik she's under a specialist, in fact she must be as she goes every 6 months or so and this latest one it was mentioned about the drugs etc she's on.

we were talking on the w/e as she's now started to open up more about it all and she said the thing that really brought it home was the fact when she was younger she couldn'ty go to lazer quest and such due to the strobs, althou I might add she's gone to all the clubs/discos/partys etc, it's just if a strob comes on she turns away/leaves the room. also she said with her computer screen she can't have the standard ones as they flicker and she has to have a flat screen one. I think it's little changes for her which makes all the differnce iycwim.

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edam · 03/09/2006 10:57

Only a tiny proportion of people with epilepsy are photosensitive though, won't necessarily be an issue for your dd.

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girlie1 · 03/09/2006 11:10

Hello edam & munz, its great to get your messages so soon! Thanks so much for the advice. I am seeing my GP tomorrow so will start the pushing process. How reassuring to hear that it doesn't affect your life edam and that your epilepsy is easily controlled. I have done a fair bit of research and it does sound complicated and also there aren't many specialists for children in k UK - only 62 in the whole country apparently.
By the way, my dd is fine with lights and the computer (loves the Ceebies website) so no problems there.
Anyhow, thanks again!

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lou33 · 03/09/2006 11:14

edam is right in what she says

i had epilepsy since i was a baby, and have been seizure free for about 18m now, to the point i passed my driving test 2 weeks ago

and excellent paed neuro btw is dr nick cavanagh, who is based at the chelsea and westminster hospital in london, he is fabulous

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edam · 03/09/2006 13:00

Hi Lou, how are you? Thanks for the inspiration about driving - have sent my forms off to the DVLA so just waiting to hear now.

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snowybun · 03/09/2006 13:06

Hi girlie,

I would definately check the epilepsy forum that was given earlier very helpful.
My son is 2 this month and has epilepsy, He has had 5 eeg's so far 4 of them have come back normal we are still waiting for the results of the 5th one. He is on tegretol and epilim and we are waiting to see if this combination will work for us his last seizure was last weekend.
I agree with the person who said that epilepsy is hard for the people who have to see their lo's go through these seizures. He first started having seizures at 15 months old just completely out of the blue and scared the life out of us.
If you haven't already start a seizure diary this helps a great deal when at appointments and will help see if there is a trigger or pattern emerging.
HTH

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girlie1 · 03/09/2006 13:27

Thanks Snowybun, sorry to hear about your son. Hope the medicine works. We have started writing things down in the last few days and trying to video some episodes but sometimes its a false alarm and she says 'I don't want a photo'. I have heard about EEG's being unreliable. Did you get your diagnosis another way - through an MRI scan maybe?

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edam · 03/09/2006 13:31

Girlie, I think the thing about EEGs is unless you are actually having a seizure during the procedure, they won't necessarily give much useful information. But it's worth a try. I had an MRI scan which showed a possible cause (although it's never been established firmly).

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lou33 · 03/09/2006 17:06

ooh really edam? that's great news, let me know how you get on!

i'm good ty, how are you?

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edam · 03/09/2006 22:27

ty?

Glad to hear things are good. Everything's OK chez edam too.

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lou33 · 04/09/2006 00:23

ty = thank you

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Choco · 04/09/2006 04:24

my son (now 6), was diagnosed epileptic at 6 months old. his form of seizure was also not the "normal" type, i first noticed him staring into space, lip smacking, face flushed and unresponsive for 2-3 mins, then he would be tired and would go to sleep. the first day i noticed it was 1 episode a day and by the time i brought him to the dr and admitted to the hospital it was once every half hr. EEG only shows abnormalities if you happen to have seizures while taking EEG, and it happened to my son while his was taking the EEG, so the EEG actually showed spikes, MRI showed no significance, the dr. said they didn't find a reason for his seizures which was good news, bc most of the time if you find a reason to it, it's not a good one (eg. tumor), he also said that most seizures are unexplainable. my son was on medication for a year and a half and they gradually weaned him off. now he's been off medication for almost 4 years and has been seizure free!!! so don't you need to worry! most children's seizures happen for no cause and alot of them actually outgrow it!

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girlie1 · 04/09/2006 07:54

Thanks everyone. Its most reassuring to hear all this. Aren't Mum's great at helping each other out? I will now put a smiley in for the first time. Choco, so pleased your son is ok - it is scarey when you see them have a seizure. It only seems to happen infront of her Dad and I reckon some family members think we are imagining it.

Now, if only we could crack DD's sleep issues! After another disturbed night I think I need to check into the sleep problem board too!

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girlie1 · 04/09/2006 17:44

During some of the episodes my dd has she says she is having a bad dream and looks frightened or pulls away from something. Maybe a hallucination? Anyone else seen this.
Thanks.

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kando · 04/09/2006 18:11

Hi Girlie1. My dd1 is now 5.5 and was diagnosed with absence epilepsy when she was 4.5. She has had an EEG and an MRI scan - she sailed through the EEG (and was most put out when she saw the mess they made of her hair with the sticky pads), and was given a general anaesthetic for the MRI as they take so long to perform and you have to lie still. She started on medication in June last year - she had one "turn" the day after starting the medication, and has been seizure free ever since. Like your dd, my dd remains as bright as a button (a bit too bright sometimes and her epilepsy hasn't stopped her from doing anything most young kids want to do.

It is a horrible, scary thing to witness, like you say, and I have to admit the thought of her being on medication for the rest of her life made me feel sick. Hopefully though, they will wean her off the medication (tegretol) and she will remain seizure free. I think you may be in London, but the paed she saw (who was also an epilepsy consultant) was at St Mary's Hospital in Portsmouth - Dr Amanda Freeman. I hope it all goes well with the tests - how long do you have to wait for the EEG?

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edam · 04/09/2006 22:20

Girlie, Kando, this is obviously a long, long way in the future, but worth bearing in mind... if your dds are eventually taking anti-epileptic medicines by the time they are teenagers, they will need a review to sort out whether the medicine is appropriate for a woman of child-bearing age. Sadly in many cases no-one thinks to review medicines as children grow. And some common anti-epileptic drugs cause birth defects and/or interfere with the action of the contraceptive pill.

Sorry to be the voice of doom, and I know it's an awful long way off. But I know how bloody lucky I am that I happened to live a few doors away from a specialist hospital where the doctors were switched on enough to put me straight onto a drug that is relatively safe for pregnancy, purely because of my age.

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lou33 · 05/09/2006 12:52

edam is right, epilim is to be avoided with women of childbearing age, as i found out too late

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kando · 05/09/2006 19:11

Thanks for pointing that out Edam & Lou33 - a very important consideration for dd when she gets older. Her consultant has actually mentioned this - it was discussed before she was put on the medication she's on now, but with a "looking ahead" approach. I'm hoping that when they eventually wean her off the medicine she will remain future free, but only time will tell ...

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lou33 · 06/09/2006 11:51

thats good the awareness is out there now, it was all being covered up when i was pg with dd1, she had a lot of problems as a result of the anti convulsants i took

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Bethron · 06/09/2006 12:04

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girlie1 · 06/09/2006 13:54

Yes Edam and Lou33 thanks so much for alerting me to these futher potential problems/issues. The more info you have the better. I do have a friend with epilepsy which is not fully controlled by drugs and she had the worry of taking the medication during her pg but thank god all was ok.

Bethron, the GP was not that interested and told me the paed would have to refer her to a specialist, the paed emailed me to say the GP would have to do it! So the merry go round begins! I at least have the appt for the sleep deprived EEG which has been brought forward due to my hassling them. I realise this may not be conclusive at all but you seem to have to go through it. Now we are pushing for an appt to be set up with a specialist (offering to go private if needs be as my Mum has offered to pay but hopefully not having to) before the test has been done and not sure if they will agree to this. We have been holding off booking a holiday and really want to get one of the late Mark Warner deals we usually get but don't feel we can do anything until we know what's up.
Just dreading the sleep deprived test now but no doubt we will get through it.
Thanks again for messages which really help.

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Bethron · 06/09/2006 17:17

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