Could this be DS first seizure?

[fnm]

Hello everyone, I dont post much but do read regular. Im just after a little advice.

Bit of background history, DS was diagnosed with a rare disorder last year, schizencephaly. He is now 2.6mth and doing great, he is right hemiplegic, speech lang delayed but overall hes doing fab. With his condition most suffer with seizures but so far nothing has happened - until last night.

DS always wakes in the night, never slept through ect, always wakes crying. midway through the night we bring him with us. Last night he woke in our bed about 4ish crying quite loud, he appeared to be stuck like he couldnt get up so DH picked him up and his right arm was shaking, it only lasted about 10 secs but kind of scared us, we put him back on the bed but he seemed drained and couldnt even sit up to get a drink. After a few mins all seemed ok and today hes been fine.
Sorry its a little long but i just wanted to know what you all think. I thought maybe it could be a bit of cramp but arm was really shaking and especially with him seeming so lathargic after has got me worried.
Also where do i go from here, do i need to report it to his pead, at what point do they do tests if they do anything at all?

Thanks for reading.

Its quite common for wee ones to be exhausted after a seizure. Did you notice anything else unusual about your DS while it was happening.

The best thing to do is write as much down as you can remember - what was happening before the possible seizure, how long it lasted, what DS did and how long it took him to come back to normal.

Usually I think they were do very little if no more episodes occur but once more than one happens they are likely to considering EEGs and usually an MRI too.

Keep a note of any further potential seizures and if possible record them on a phone/camera if you can.

Sure others will be along with better advice.

Thanks for replying loflo, i spoke to ds lead professional today who gave me the same advice as you. So thank you. She was contacting ds consultant for me but doubt they will do anyhting just yet, just have to keep everything crossed no more seizures come along.

Just to update really - got back from hospital today. Since sunday ds has had 4 drop seizures and 2 tonic clonic, they have given him sodium valproate so just go to see how it goes, not had any since yesterday but im really not feeling very brave. How on earth do you all cope with the seizures?

hi fnm

not got any experience of seizures -my ds has other health and developmental issues. Just wanted to pass on my sympathy and offer you a virtual glass of wine.

Thank you very much crunchyside, thats very nice of you, just all doesnt seem quite real at the mo. Cheers back to you, but with my real full glass of wine, its well needed

Hi fnm

Just wanted to send you and DS a hug. My DGS fitted badly at birth and in his first year had several weeks of vacant episodes (60 a day) which appears to have stopped for a year now (touching wood as I say this). My heart absolutely goes out to you. We live in terror of epilepsy, and his cerebral palsy is nothing we cant deal with in comparison. I hope the meds bring the siezures under control. Most siezure disorders are controlled with medication so pray this is the case with DS, but I too don't know how anyone copes.

Thanks beammeup, completley agree with you, cp and everything else that comes with it i can handle but seizures are the worst things in the world. I do hope they can control them but as his condition is rare and severe as in amount of damage the consultant told us its going to be very hard to treat. Makes me feel physicaly sick, just dont know how to cope with it at all. Hes just woke up, dont know whats woke him up, mabe hes a little scared or somethings going to happen. this is bloody horrible!!!

My poor daughter had a wobbly do lately with palpitations etc. Thankfully GP today said was anxiety following distressing 2 years. She says its the fitting thats constantly at the back of her mind causing such worry. Just the thought of them coming back is so distressing, I cant bear to think how this must be for you. DGS is nearly 2. Arent they so vulnerable and helpless? Its our need to protect them and not being able to stop the nastiness that hurts so much. My DD is getting counselling, its worth looking into for yourself too as you will need to be strong. There is a long way to go and lots of different meds to try so dont give up hope. You will get other mums here who have similar problems, and I hope they can give you good solid advice.

XXX

Oh fnm I am sorry to hear your news. Once DS started on meds his seizures stopped but the speed and intensity of them was really scary before they started being controlled.

Has getting an EEG/MRI done been mentioned to you?

I have a really good guide I could email to you if it would help?

Take care,

loflo

Hi loflo, hes seems to be ok at the mo he only had one drop seizure this morning. But on a few occasions today hes let out a loud cry as if somethings hurting him. when i asked him if it hurts hes said yes and touched his head so im not sure whats going on there.
We have a epilepsey nurse visiting in 2 wks, he is booked in for a eeg on tues and the consultant said although we have his previous mri more may nedd to be done in the future but not yet.
Id love it if you could email me the guide, any info i can get my hands on at the mo is great, its all a whole new world to me.

No problem fnm - I don't have CAT so if you drop me a mail to [email protected] I will mail you back.

Hi fnm my ds2 has epilepsy and I know how scary it is, especially at the start. It was the reason I came on the SN board in the first place and I have found it a great place to stay, especially as ds2 has other behavioural/sensory-related issues which people with NT kids just don't appreciate (not least the incontinence).

Keeping a seizure diary is a good idea because then you have specific answers to the questions all the doctors will ask you. I started off with a separate diary to record his seizures, but then bought myself one of the diaries made by Organised Mum and I use three of the columns just for ds2. (Currently as he's not having seizures I record his energy levels, incontinence and general behaviour.) No-one else will be keeping notes for you - even when ds2 was in hospital the doctors and nurses didn't seem to care that he was having loads of seizures - so they don't really have a measure of how well the medication is working and will go by what you are saying. (That's my experience, anyway.)

I do hope the sodium valproate works for your ds. Liquid is probably better at his age but be aware as he gets older that there are tablet forms too, without the colouring and without artificial sweeteners. My ds2 has done better on these than on the liquid form. I still think it's counter-productve to put colourings known to cause hyperactive behaviour into medicine for children who already have enough going on in their brains.

Anyway ds2 started on sodium valproate (and briefly clobazam as he was still having lots of tonic clonics while the valproate was being ramped up). But he also had lots of myoclonic seizures (we call them his 'little jerks'). Those only went with the addition of lamotrigine, which made him extremely tired when it was being introduced, and had to be ramped up slowly. We were very lucky to be able to control his seizures with the first two drugs we tried. At the moment he's completely weaned off the valproate so he's only on lamotrigine. It was a difficult time when he was still having daily seizures, and once they were under the control there was the worry about what the AEDs were doing to his behaviour and cognitive ability. That's why I have been keen to wean him off the valproate, in particular. But he was seizure free for over 2 years before we started this.

I found the NSE (National Society for Epilepsy) and Epilepsy Action websites were very useful and I still go on the NSE forum from time-to-time. It's not as busy as this one, so if you post a message and only get a few replies, don't think everyone is ignoring you, it might just be that they haven't visited the site for a while.

I remember when ds2 was having regular seizures they really wiped him out, and also he kept complaining of his eyes hurting. One of the most sympathetic people we saw at that time was actually the radiologist doing his EEG, who pointed out that his head was probably hurting a lot after all the seizures, a bit like a bad migraine. So when your son is indicating that his head hurts it might be similar.

I'm glad you have an epilepsy nurse visiting - this provision seems to vary so much around the country and we were never offered anything apart from infrequent appointments with a paediatrician.

Anyway thinking of you, and I have CAT so please feel free to contact me outside of Mumsnet if you want.

Thank you so very much highfibrediet for sharing your experience with me i found it very useful. Its really good to know whats to be expected.

What and how do i CAT? mine is enabled but ive never used ot before.

Hi again fnm, the problem is no medic can tell you what is to be expected as they don't really know how it will pan out in your child's case. Plus they seem to deal only with the medical side of things, not the care side (although hopefully the nurse will help a little with that). And they are very loath to make any specific predictions either... However sites like this one and the NSE forum do help parents to recognise the similarities in their experiences.

If you want to CAT me there's a link under Membership at the bottom of each page: click on 'contact a Mumsnetter' and put my talk name in, then a short message, and it should come into my e-mail account.

By the way, I googled schizencephaly last night and noticed that children often have hydrocephalus and have to have a shunt to drain the fluid - my adopted sister had hydrocephalus so although I haven't experienced it from a mum's point of view I do vaguely remember it as a sibling. (She had epilepsy too.)

Hi fnm - I have sent you an email.

Hi just another update, things havnt been going too well, yesterday ds had 3 more drops, each time followed by full seizures, got discharged from hospital this morning, they have put his meds up and given me a prescription for midazolam incase they last longer than 5min. they are were now coming thick and fast and more violent. he hasnt had any today though.
I feel emotionaly exhausted, its the most horrific thing ive been through. Those who deal with this on a day to day basis, gosh i cant even imagine how you go through it but no doubt it will come to me soon.
Thank you loflo, will try and go through it at some point and will try and get in touch with highfibrediet soon, so far ds doesnt have hydrocephalus but its the only thing he doesnt have, its something im also expecting to come my way at sometime or another. Sorry for waffling on, just feeling sorry for ourselves at the moment.
Just one thing, when ds has his seizures he cries really loudly, like hes in pain. its horrible, all the docs tell me is doesnt feel anything but does anyone know if it does hurt them, im thinking hes having really bad headaches or something.

Crying out can be from the seizure expelling air from the lungs.

I've recently been diagnosed with epilepsy, and I definitely feel sore after a t/c

Hey fnm - sorry to hear things haven't improved - headaches are common after a seizure - DS used to slap his head.

It is exhausting and its really hard - hope you have some idea when eeg is going to happen?

Try and rest yourself too and eat something even if its a banana or an oatcake to keep you going.

Thoughts are with you - its really shite.

Take care,

flo

Hi fn. Sorry things aren't going too well at the moment for your DS. DS1 has epilepsy too,and whilst things are pretty good at the moment, I know just how bloody awful it can be. Finding the right meds for children is very much an art and you may well find that you are chopping and changing all over the place. Hopefully you'll find the right one soon. It's good that you have been given the emergency meds - they somehow "forgot" to suggest it to us until 18 months down the line and a first incident of status.

Again, please do contact me if you want any more info etc.

Snowmash - hope you are feeling ok and that your seizures are under control??

fnm: really sorry that things haven't picked up yet...finding the right meds definitely seems to be an art unfortunately :( It's ok to feel sorry for yourselves...thinking of the whole family. Your ds may be able to tell when they're coming on when he gets older (depends what sort). I hope that they get the meds sorted soon - really good that you've got access to an epilepsy nurse, as they can be good support and a way of fast tracking your concerns to the consultant.

fatzak: Thanks for asking...not really under control, but better than when I was losing bits of most days/weeks (turns out my neuro condition/drugs were masking it, together with my longheld assumptions like my PEG was pulling, which is actually an aura apparently ).

I'm told to have patience and that my memory/head should improve once they get the meds right (they think my memory is bad because I'm still seizing).

I should feel lucky because I have open access to neurosurg/neuro, so I got all the tests quickly (7 days in hosp), but it was a big shock...and the lack of consent/control to the bits I do remember was not fun (and aspects were surreal - scan under GA resulted in teddy bear ECG stickies and blue teddy bear cotside bumpers, and when I asked about risk I was told I needed it because I'd failed having one awake...). I think if specialist nurses I knew hadn't been coming to see me too, it would have been much harder to deal with.

Epi internet forums seem ok as long as I don't mention the rest of my issues, as then people do the 'poor you' or 'how do you do it?', which doesn't help...which is a shame as it's how it relates to everything else that I'm trying to sort out (and can't find other adults who need scans under GA/have other significant neuro conditions).

Also worried about them taking away my power chair if I have a secondary generalised(???) in the day, and concerned about effect on dc (SS don't need an excuse). :(

I know that it must be much harder when it's your dc though...

snowmash, fnm, so sorry to hear things are difficult at the moment. Fingers crossed both of you get the seizures under control sooner rather than later.

Fingers crossed from here too Snowmash and FNM. Really hope they can get meds sorted out which may help very soon.