Just back from the hospital, ds, 11 months just been diagnosed with epilepsy. Myoclonic seizures. Wat to expect?

[caitlinnjacksmummy]

Hi, I posted a while back thinking my son , 11 months, had some sort of epilepsy, have just had it confirmed, he takes myoclonic seizures, and is to get an mri scan, bn started on medication, but was warned that the fits can change dramatically in a year, I am worried sick, can someone advise me on this please, I am lost

Thanku everyone, am still soo worried about DS, yesterday he never had any episodes, but was very dazed looking for most of the day, and last nite seemed to come alive, this morning he is very alert. I am still slioghtly worried bout brain tumour, but not as worried because I spoke to partners nana, she is partners mum's mum.....so she put my mind at rest, she said that the tumour was caused they think by a severe bang in the head when she was younger and then it grew and grew without anyone knowing, and then they had a family holiday to florida and going on the plane triggered it and she was diagnosed when they came home with cancerous brain tumour, and for 10 years they kept it at bay, with radiotherapy and operating too, and drugs, then it got to point where it grew and grew and could not b controlled anymore....but last nite me and my mum were going thru pics on my phone and came across one wher Jack's rite eye looked strange compared to his left, it was very dark as if there was no light in it, it looked dead, kind of...my mum was like telling me how she read a story in a magazine about the same thing and the child turned out t have a brain tumour... but feel she is scaring me(unknowingly), and she was like " oh i would call the dr" Jack has appointmant next tuesday with consultant, but don't they look for signs of brain tumours and things, like they look in their eyes and stuff? My sister sed if they thought it was anything like that they would have him in and testing him? xxx

The only way of making sure is an MRI. Push for an earlier one. In adults brain tumours cause headaches, slurry speech and coordination issues. Hard to spot in a child.
I read that magazine story too.
It does happen of course, but its extremely rare. Much more likely to be something else.

Yeah thats wat i thot and i am not reading too much into it, no way, my gut feeling is epilepsy and no other reason xxxx Jack does have coordination issues, hardly goes for toys, looks to have something wrong with right arm, hardly uses it at all and finds it very difficult grabbing things and doing things with that hand, left arm not brilliant either tho. He is behind developmentally 2, hardly sitting alone, and he is 11 months, however he is rolling and nearly crawling. And babbling lots now altho nothing really that makes sense xxxx

Hi, well on tue night Jack had really bad seizure nd for 1st time went unconscious for 15 mins, never bn so terrified in all my life, he was rushed to hospital by ambulance, dr doesn't want to increase or change his meds yet as he has only bn on it a week today, but he has appointmant on tues to b reviewed again.......he has emergency meds to use if he has seizure for least 5 mins by back passage(poor little man) and if it doesn't work then have to call an ambulance...am so scared, keep staring at him to see if he is ok, terrible xxxx

Hi Caitlin. I couls shake your docs. Very few people use rectal diazepan now. Ask your GP for oral buccal midazolan. Much easier to give as it goes between the gum and cheek and is absorbed there.
We've done status seizures so many times that we have reached the stage where we stick her on the floor, call 999, order the ambulance and hang up so we can get a bottle/milk/meds/spare clothes etc for the hospital.
dd started on keppra last week and every single myoclonic has stopped

Hi Caitlin, try not to worry too much, i know its hard. My dd is 17 months and was finally diagnosed with epilepsy in the summer, even though we were constantly calling an ambulance because she was having these 'funny turns'. They finally agreed it was epilepsy even though we were told in the beginning that because of her condition (a rare brain disorder) she was 99% likely to develop epilepsy. I think she has every type of epilepsy going, she has ones where her eyes roll and her head twists to one side sometimes screaming out, ones where her eyes roll and her face twitches, sometimes her whole body, other ones that look like shes been startled - think these are infantile spasms - and then she has the big scary clonic tonic ones where we have to call an ambulane as they can last up to an hour. Haven't found a rescue medication that works to bring her out of them, have tried diasepam and midasolam so far, and running out of daily medications to try aswell, think they may start her on the ketogenic diet. Anyone else had any success with this. Sorry this is such a long one.

Hi NMC and loli, thanx for replying, yes it is sooo frightening i thot he was going to die honestly, he had 3 the day he came out hospital, 1 in hospital 2 at home as he was falling asleep, but minor compared to the one when i rang an ambulance, meds not bn changed or increased yet, as he has only bn on them a short time, has appointment at hospital tues where it will b reviewed xxx thats great nmc bout dd myoclonic ones all stopping, wish Jack's would 2 xxxx

its taken 4 years Caitlinn to find the right medication. We're going for the ketogenic diet if her EEG doesn't get better soon.

Wat is the ketogenic diet NMC? xxx 4 years is a long time, very long time, Jack's occur the majority of the time when he is waking from a sleep or about to fall asleep, altho the other nite wen had t get an ambulance he was just out the bath.xxx

The ketogenic diet is high fat/very low carb/low protein and the aim is to put the body into ketosis (starvation). No-one really knows why it works but its only used on intractable epielpsy. You got a long way to go before you get to the intractable stage and hopefully you never will!
Its not easy because the child can't have normal food. They eat cream, fat, cheese and very little else. Everything must be weighed and must be eaten which isn't easy in a toddler.
If dd ends up on it we will have a G-tube put in to make it easier. Her intellect is more important than her stomach.
Did you ask about infantile spasms?

Rite I see. Drastic measures, for drastic times , it is terroble isn't it? I really hop I never get to that stage either.... never mentioned infantile spasms, they have se it is myoclonic seizures and the one he had wen we called an ambulance was a generalized seizure xxx

worth asking because infantile spasms is treated differently and many docs misdiagnose it as myoclonic epilepsy or 'nromal' epilepsy.
It has very specific drugs.

Rite, wat does infantil spasms look like and can they go unconscious with it? xxxx

IS looks like a brief jerk exactly like a myoclonic. Can be one arm or both arms, can be a big crunch or just a tiddly head nod. But usually there's 20-50 in a row and the child is sort of aware between each one but not always,
If you go to youtube there's a number on videos on there of IS. Couple from me as dd's were unbleivably subtle.
I'll see if I can find some.
here Thats classic myo's for IS
www.youtube.com/watch?v=fEgAjCv7VQo quite violent ones.
www.youtube.com/watch?v=Jhv1KfloDO8
dd's very first ones which were one sided only (left arm, head to left, eyes up) which is why they kept saying they weren't IS

God, I
watched them, Jack's aren't as violent,but an arm or leg does come out, but always starts with eyes rolling and he does lip smack at end of 1 Jack does look aware but staring kind of and then his eyes will roll and his arms and legs jump, like wat u do while sleeping then he wioll look normal, then he'll do it again, but as it nears to an end the eye rolling and jumping lessens til it stops, then he just looks completely confused and is dazed for long time after sometimes the whole day xxxxx

Had Jack's appointment yesterday n was told there is a very small chance he will gow out of it so not so ggod and his meds have been doubled t 4 ml mornin n 4ml nite instead of 2ml in morning and 2ml at nite xxxx

hi caitlinn, hope the increase makes a difference to Jack, as nmc says (and she would know better than me) I think it often takes a while to adjust the medications until the seizures are controlled. Ds2 is still having myoclonic seizures every day and has just been started on lamotrigine. The neurologist says that this drug is supposed to be very good with myoclonic seizures, but they are introducing it very gradually, so it will take us about two months to get up to a level which might actually make some difference.

Did they give a reason why he probably won't grow out of it? Sometimes it appears that the medics err on the negative side just so you don't have any false hopes.

Anyway, thinking of you, and hope you don't have too many hospital visits in the near future.

Hey mummypig, thnks for replying, just sed with the type of seizures Jack is having that there is a very small chance he will outgrow itn that he will probably hve it all his life. Jack is on nitrazepam now 4ml in morning and 4ml at night, really praying it makes a difference, he had bad seizure 2 days ago and had to use the rectal diazepam for the first time it is a sin for them isn't it? Wish it was me instead xxxxx

I still suprised he has him on a benzo rather than an AED. Sure benzo's stop seizures but they also caus mental slowing and attention issues..
Lamotrigine can be pretty god with myoclonics. We had ro go up 5mg every 2 weeks when dd started. We're now weaning it cos the myo's came back. She's now on keppra and its fantastic. Not a single jerk for 2 weeks nw!

Excellent i am sooo depressed with it all, it is like living with a little timebomb, poor little man, he has jus had another big one at half past 3 and had t again give him rectal diazepam, I don't think i will ever ever get used t this, do any of u gt any help? Or do you cope ok with it? Well have an appointment again on 27th again and they will put it up to 6nl if still no better at 4ml, I hate this, also got DLA form in post today, does anyone else get dla for their LO's? xxxx

You do get used to it but the first few months are hard. We get DLA for dd and you should be entitled to high rate care with epielpsy - make sure you pick the wosre day to describe and make sure you let them know dd needs care at night too.
How long to you wait to give the diazepam (and ask for buccal midazolan - its given by mouth)?

Do you want to talk? I'm quite happy for you to call me if you need to talk.

Hey that would b good or even to text NMC? I feel so alone a dunno anyone else who has children with this never mind a baby, I think on the form I have described it good and I have made sure I wrote that he needs care during the night too, What is high rate care? Do you also get carers allowance? Yeh the rectal diazepam takes nearly 10 mins to work I feel, WELL he had seizure coming out a sleep at half past 3, well say 3:32pm and then I gave him the rectl diazepam at 3:43 as it started t get much worse but took til 3:53 for it t really show improvment but not completely stop, Do you have to use emergency meds a lot? Wen do u use them, they told me after 5 mins give it then if not out it by 10 mins(am not sure if this means 10 mins after givin rectal diazepam or 10 mins into seizure which would mean 5 mins after giving the diazepam) then t call ambulance, he has told me not t give it again after 10 mins just to call an ambulance, it is all very confusing? I mean sometimes I can tell the severity of seizure is worse than usual or less severe than usual this is kinda how I judge wen to give rectal diazepam? Or is it any kind of seizure lasting 5 mins or more cos Jack's always do, jus don't wanna be having to call an ambulance every 2 mins, cos he has a least 1 seizure every day xxxx

email me on [email protected] and I'll send you my number. Its no problem.

there's two rates of care for 'care' on DLA. Once he reaches 3 there will be high, medium or low mobilty DLA too. Hopefully you wont need it.
Once you get DLA you can apply online for carers allowance. Its on the income of the person who doesn't wok.

Ok mine is [email protected] xxx