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DS diagnosed with Epilepsy today and looking for advice

(25 Posts)
tiredismymiddlename Tue 17-Sep-13 21:19:51

My 9 year old DS was diagnosed with epilepsy with myoclonic absences today. I was given some pretty scary literature about prognosis and wondered if there were any online forums I could go to for advice and support? Its upset me to be honest and I am not ready for too much detail yet but realise that I have to be informed about it. Apologies if I don't reply to posts straight away, I appreciate anyone taking the time to answer but don't have much time on the computer each day.

Willdoitinaminute Tue 17-Sep-13 23:16:15

Hi Tired my Ds was recently diagnosed with benign Rolandic epilepsy. I have done a great deal of googling and there is a good UK site called Young epilepsy.
You also need to inform his school so arrange a meeting soon. They may have experience of children with epilepsy and be able to point you in the direction of a local support group.

tiredismymiddlename Wed 18-Sep-13 22:01:35

Thanks for the advice willdo, I will definitely try that site. His consultant is going to arrange for the local school nurse to go into his school and I will try to be there at the same time. I have taken in some info for them and have begun to try to look up some more info online, it all seems a bit scary though so am taking it one step at a time.

tiredismymiddlename Wed 18-Sep-13 22:04:24

Just had a look at benign rolandic epilepsy. I'm sorry to hear that your DS has it but really pleased that the prognosis looks so good for him. I hope things go well for you.

Willdoitinaminute Wed 18-Sep-13 22:35:35

Thanks I think the worst part of any type of epilepsy is the randomness of it all. I am an HCP and have seen and dealt with a number of different types of patients with seizures and it is so different when it happens to your own child. And the knowledge and ability to understand all the neurological stuff doesn't really help. I tend to overthink it all.
There is some pretty strange health advice in the land of google so tread carefully sometimes you can frighten yourself unnecessarily. Beware of health trolls I think these individuals have some form of Munchausens by internet (actually just checked and it exists).

tiredismymiddlename Thu 19-Sep-13 19:29:21

I have started to look at things on the internet and its just made me feel worse today. I am going to take it really carefully and resist the urge to try to learn about it all at once. We have an MRI booked and will see the consultant again in a couple of months so I am going to start to collect questions together for then. Amazing to think that there are people out there that troll about things like this. Thanks for the advice.

SalIAm Sat 21-Sep-13 07:40:51

Good morning, tired. Well, and I appreciate that this might be difficult, but the best advice my mum was ever given was not to make a big deal about it. I was expected to work just as hard at school, continue taking part in sport, etc. I appreciate it might not be possible for all, but as I only really had seizures once or twice a year when on meds, I continued having the highest grades in most subjects at school. I also went on to uni and had a very good professional job (currently a sahm). I'm saying this not to boast, but just so you know that it doesn't mean life as you know it is over. It might just be an "annoyance" making life a little harder but still fine.

I was diagnosed was epilepsy around age 12/13, and for me the biggest annoyance was to drink my medicines twice a day. I was also very tired first thing in the morning. Weirdly though, it was fine during the day.

The type your ds has is mostly outgrown too, so until you've made peace with epilepsy, it might help reminding yourself that it's probably not permanent. Though you know what? Even if not, when it's well controlled, it's not too bad anyway. Only thing: changing or starting new meds is hell (be prepared for extreme tiredness for a few weeks), but your body does adjust.

Hmm, my post getting a bit long and I haven't had my morning coffe yet, so probably a bit rambly! Please feel free to ask me anything about living witt well controlled epilepsy. It's honestly not too bad.

The following website might have more information for you:

78bunion Sat 21-Sep-13 07:44:22

Always take your doctor's advice but do research and if you can try the ketatonic diet - about 80% good fats and for some completely stops fits without medicine.

CurseOfCurves89 Sat 21-Sep-13 07:52:23

I don't know if any helpful sites or anything but I was diagnosed with myoclonic epilepsy when I was 15, on Christmas Eve no less, and I was very lucky to get it under control within a year or so and never had a problem with it after I got on the right medication. Hopefully the same will happen with your ds. My doctor told me at the time that while it's definitely a condition to respect, its not one to let fear and rule you. Good luck x

InMySpareTime Sat 21-Sep-13 08:18:09

My DS was diagnosed with absence epilepsy this year, aged 11.
The scariest bit of the diagnosis was when they did an MRI and induced several seizures while we were there. we saw the traces on the screen during the seizures, they went haywire!
He didn't like the liquid medicine so taught himself to swallow tablets.
At worst he was having 20-30 absences a day, now he's on the meds I haven't seen one in months.
He's getting a noticeable tremor on Epilim though, we're going to have to ask about changing meds soon, I'm not really looking forward to that.

Tinymrscollings Sat 21-Sep-13 08:40:34

Try Epilepsy UK, the fact sheets on their website and their phone line are excellent resources. Try not to google if you can help it, you get the worst of the worst cases - people who discover their child's epilepsy and get it under control with meds don't tend to write their stories on the Interweb but we are legion. My son has a 'devastating' childhood epilepsy, the nastiest of the nasty ones. If I believed everything I read I'd have lost all hope for his future, but he is by and large happy and well. Your son will write his own story, as has mine. Oh, and DIY Keto diets, which you'll also find if you google, aren't a good idea.You need loads of supervision and support. Best of luck, it's terrifying stuff but it will be OK.

Tinymrscollings Sat 21-Sep-13 08:43:56

Oh, and if you're on Facebook you'll probably find a closed support group for his particular type of epilepsy. Loads of patient-experts who will advise you on questions to ask, meds to push for etc. mine was an invaluable research in the early days - being well informed by people who have trodden the path is a good idea, being terrified by google not so much.

78bunion Sat 21-Sep-13 09:55:47

Always do a keto diet with doctor supervision

tiredismymiddlename Sat 21-Sep-13 21:18:28

Sorry I haven't been online for a few days as it all got a bit on top of me. So grateful for all your comments, mumsnet at its best! All of your posts have given me so much hope. We have all had a great day today and it has shown me that life goes on as usual. You are all right, just because there is a worst case scenario doesn't mean that it will be like that for DS. I really can't stress how much I appreciate all your support and will definitely look into Keto diets when we are all feeling a bit more settled with the diagnosis. He started Sodium valproate today, I sort of expected a bit of a Jekyl and Hyde reaction this morning then calmed down a bit and gave myself a reality check.

I will also feedback to the consultant about the info sheet he gave us during diagnosis which had 'poor prognosis with over half of children developing learning and behavioural difficulties'. It might not be the best publication to give to newly diagnosed patients and parents!

pourmeanotherglass Sat 21-Sep-13 21:27:14

DH has had epilepsy since he was young. It is well controlled with the drugs he takes, and he hasn't had a seizure for 20 years or so. He is allowed to drive.

Tinymrscollings Mon 23-Sep-13 10:30:23

Give it some time to sink in. When I was at my lowest after DS was diagnosed the Epilepsy Nurse said to me re. long term prognosis and learning/behavioural difficulties that you won't love him any less or any differently. His life might (might) be different to what you expected but he will still be happy and his achievements will bring you the joy they always have done. She was absolutely spot on and I try and keep that in mind when things get a bit tough.

tiredismymiddlename Wed 25-Sep-13 13:04:13

Thanks tinymrscollings, when I think about things he won't be able to do I have to remind myself that he might not want to do them anyway! We put so many of our hopes and expectations on them. Maybe this will have a silver lining so we can appreciate his achievements more? Things won't always feel this tough so I will just try to look forward to when things feel normal again, the new 'normal' anyway!

cordyroy Sat 28-Sep-13 10:58:32

Hello tired, so sorry to hear that you and your DS are having to deal with this. Can I ask how it was diagnosed? my little man (nearly 3) has just been referred for an EEG for suspected absence epilepsy. I'm so worried and don't really know what to expect. I'm avoiding googling as i'm scared of what I may read and don't want to get ahead of myself until I know exactly what we are dealing with.

thank you x

InMySpareTime Sat 28-Sep-13 17:40:20

Cordyroy, we filmed a couple of DS's "blank outs" to show the consultant. They stuck loads of electrodes to his head and induced a couple of seizures by getting him to take deep breaths. Not too stressful, and it's well controlled on the meds.

fatzak Sat 28-Sep-13 17:58:41

Hi tired. DS is 10 and has epilepsy - he was diagnosed when he was 3 but was pretty stable until he was 6 when it all went very wrong! Thankfully, we're back on track and on no meds thanks to the ketogenic diet but it has been a long, scary process. Hopefully your son will be one of the majority of children who are controlled on the first medication they try - sodium valporate is usually the first line medication for children. There is a great facebook page called Epilepsy sucks and there is a parent forum on the epilepsy society forum.

cordyroy Sat 28-Sep-13 21:04:58

Thank you spare, it's just a scary thing to face up to, but as you say hopefully it won't be too stressful

eatyourveg Sat 28-Sep-13 21:17:38

I agree with SalIam the worst part is remembering to take the medication. Thankfully it doesn't have too much of an impact on my life - just awkward when needing other medicines. Lost my driving licence for 2 years when all 3 dc were under 5 which was a major pita but since popping the pills I have been seizure free. (12 yrs now) Hopefully your ds's drs will find the right medication quickly and get his episodes under control.

InMySpareTime Sun 29-Sep-13 07:02:33

We got DS a pill box, and keep it on the dinner table, that way he sees it as he eats breakfast and dinner.
He taught himself to take tablets, I only mention it if I see he's missed a dose (only about once a week lately).
Unfortunately he'll need to change meds soon, as they've stopped the seizures but he's developed a tremor as a side effect, and it's bothering him.
Is it just me, or do others have that "heart sinking" feeling when their DCs present them with medical information forms to fill in? With the new academic year, DS seems to bring a new one home every few days, they never have enough space for "please give details of medical conditions and medication". I end up writing small and in the margins!
None of his conditions have ever caused him issue at any of his clubs or activities, yet I spend hours each year filling in the blasted forms to let them knowhmm.

DwellsUndertheSink Sun 29-Sep-13 07:28:06

my dd, 16, has just been given a provisional dx of temporal lobe epilepsy. She has always had moments of vagueness, we put it down to daydreaming, but after a couple of fainting episodes, we had her checked and now we know that she is having mini seizures.

She has her MRI today, and we will get a formal dx in December.

So...untreated (how mortified am I not to put 2 and 2 together before now??) she got 4A*s and 7 As at GCSE.

EnlightenedOwl Sun 29-Sep-13 15:35:11

I was diagnosed at eighteen with temporal lobe epilepsy
would it help you to know
- I have got a degree
- I have got a good job which I hold down no problems

I know I'm lucky its well controlled and my only restrictions if you like are that I must have good sleep patterns, and I have chosen not to drink alcohol at all as it messes up how my tablets work.
I would suggest to you, now, to take small steps, don't absorb or try to absorb too much information at once, remember other peoples stories and experiences will differ from yours and that epilepsy can be lived with and be pushed to the background once a good drug regime which works has been established

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