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

[magso]

Hang on in there hopefully someone knowledgeable will be along soon!((Hug!))

[magso]

Hang on in there hopefully someone knowledgeable will be along soon!((Hug!))

[needmorecoffee]

Did they give a full diagnosis such as Benign Myoclonoc Epilepsy of childhood? If you have to have epilepsy thats a really good one. Mental abilities not affected and the child generally grows out of it.
But there are various syndromes. Do you know which one?
My daughter had Infantile Spasms which is a serious myoclonic epilepsy.
What drugs have you got?

[yurt1]

I don't have experience of epilepsy but just wanted to say welcome to SN. There are people with experience of myoclonic seizures on here. Do bear in mind when doctors are talking about the future and doom mongering (as they tend to) that they don't have a crystal ball any more than you do, and whilst what they're saying may end up being the case they could also be wrong.

[yurt1]

oh nmc beat me to it anyway

[caitlinnjacksmummy]

Hi appreciate yr comments, I was just told that the seizures were myoclonic, and he has bn put on nitrazepam one 2ml dose twice daily, and to go back in 2 weeks to see if the medication is working. He is to get an mri scan in 1 or 2 months xxxxx

[needmorecoffee]

nitrazepam is not a great drug. Its a benzo, highly addictive and causes sleepiness. Generally works with epilepsy cos its sends the brain to sleep!
There are much better drugs. Epilepsy Action has a great page and there's a website (and email group) ca;;ed 'Parents of kids with Epilepsy' (POKWE)
Is your lad seeing a neuro or a paed who specilises in infant epilepsy?

[caitlinnjacksmummy]

He is a paediatric consultant, sorry took so long to reply, laptop went mad lol, can't seem to take everything in , so much to understand xx

[needmorecoffee]

its a scary time. We've just been told dd's EEG is getting bad again and I feel like screaming. 4 years of epilepsy. I hate it.

[caitlinnjacksmummy]

Aww thats terrible, a am sooo worried, was warned that in a years time he could b a LOT worse , dr sed he could start falling unconscious and full blown jerking, has changed so much since he was born, at first it was little choking episodes as he was waking up, and was told this was reflux(!) then few weeks later he started shakin his head from side to side along with choking, this followed his eyes rolling, took him back, my gp sed they looked like seizures, but consultant again sed REFLUX!!!! Still wasn't happy with this, his seizures soon increased in frequency, and then changed, they only ever happened upon waking, but now he does all this as well as head flopping and looks like when u jump in your sleep and this happens anytime now, not just on waking, I am soo scared to leave him, have daughter,6 too but she is healthy. Have also just had my 3rd miscarriage, consultant sed that if mri shows brain malfunction then this could b reason i have miscarried all these times as well, the babies coul have had brain abnormalities 2, so incredibly worrying, my dd has differnt dad u see, phew!!! Now u have had my ENTIRE life story, sorry for long post xxxx

[needmorecoffee]

docs always give you the doom and gloom but how the epielpsy progresses depends on what sort he has.
If you find the right drug then there's no reason to think he will be having tons of fits. Most kids go months and months between fits.
Have you asked about Infantile Spasms? Most docs never see a case so fail to diagnose it or dx it as reflux then simple myoclonics. IS seizures usually happen after waking with a cluster of 30-40 quick jerks, about 5 seconds or so apart.
DD had Infantile spasms at 3 months and we cured them with vigabatrin and ACTH. She remained on vigabatrin. Then 8 months later she had a full blown status seizure with jerking and drooling that lasted an hour. I called 999 and was completely hysterical. When the ambulance came I couldn't even remember her name!
Then there was a 15 month gap till the next one. Then last year she had a whole bunch. Always during sleep and always going to status and requiring hospital. So last september she had another course of ACTH and was seizure free till 2 weeks ago when she had 3 partial complex seizures (arms up, face twitching, eyes rolling and drooling) that lasted 2-3 mins but she came out of them herself. Now she is on keppra.
Please ask about infantile spasms and see if your doc can give a firm diagnosis. Ask for a refferal to a paediatric neurologist and your area should have a children's epilepsy nurse who will come talk to you.
Is your lad developing normally apart from the seizures? If he is then prognosis is much much better.
What area you in?

[caitlinnjacksmummy]

Hey!! I live in Scotland, where ru? Aww thats a shame for yr wee darlin' too, it's so terrible, whenever Jack does it I cry with pure frustrtion and have found myself begging him to stop ( lot of good that'd do)! Just feel like I am letting him down, his development is very much behind, he will be 11 months on Sat, and he is not sitting unsupported, babbles a bit, actually sed his first word earlier he sed "again" when i was making him laugh, he is such a happy, quiet little thing 2, so unfair.....But sometimes I feel he is awfully quiet, do u feel this with yr dd? Wat age is yr dd? Du have other kids? I am gettn a support worker out to talk to me to help me understand.....and have another appointment in 2 weeks time with the consultant to see how medication is going, so will say something about IS then. All he sed today was that the seizures were myoclonic, myself and my sister showed the dr a video of Jack takin a seizure and he sed this was immensely helpful, his eeg didn't show any episodes, which i was worried about and sed t the nurse wen we went bk to hospital after 24 hours of him being monitored with eeg that i didnt think he had had a bad enough one to catch, but since then they have got a lot worse and much more frequent so could hve been doing with the eeg now instead of then......xxxxx

[trace2]

caitlinnjacksmummy so sorry about your ds! my dd 7 1/2 months still not got dx for sezures, she started with eyes rolling and jerking but now as changed to (we think) some thing to do wi sleep as you say she junps like you said about sleeping but loads which stops her sleeping then shes gets upset, she also shakes her head side to side most of nighs most of nigh!, her eeg was also clear but ive been told they still have sezures even when eeg is clear. but she as been unconcouse twice with hers.

my dd as other problems to though as she gets stuck to side for about 8 hours and she is behind and been put on pysio and i think its making a diffrance now. i think once shes dx maybe i will cope more, but who knows

[trace2]

and got to had nmc as been a big surport to me even though shes got loads on her plate

[caitlinnjacksmummy]

Hi trace2!! Yes it is so hard, knowin we cannot help them is just awful, K have just hd a letter from consultant thru, a day after he has bn diagnosed!! Thats nhs for u eh?! It says Jack's "episodes" were not picked up but the eeg did show abnormalities, and they cannot exclude epilepsy, so.... just basically wat was sed yesterday, but wasn't aware til now that eeg showed abnormalities just thought it hadn't picked up these episodes...but states on the letter that the eeg didn't change wen he took these fits, but back wen he got the eeg done, start of december the fits were nothing like they r now.. they are much worse and have increased in frequency a lot. We also showed the consultant video of Jack takin the type of fits he is now taking, and he was in n o doubt tht he has epilepsy, sed the video was tremndously helpful, we took it on mobile, have u tried this? And obvously with the eeg showing abnormalities this backs up diagnosis, we have to get an MRI done to check why it is happening tho, not looking forward to that cos he will be put out for it, my poor little man, I wish it was me instead, he is only 11 months xxx

[r3dh3d]

My DD1 started having seizures at about 9 months. It is a very scary time, so I sympathise.

In terms of "what to expect"; I'd say:

• eegs often don't take first time. DD1 has a really nasty epilepsy but they didn't catch it on eeg till her third or fourth. Sleep eegs are more reliable, especially if he has seizures more often on sleeping/waking. But they are more hassle to do so you have to push the consultant to get one.

• they're useful because they help pin down exactly the type of epilepsy and this gives them a better guess what drug to use because some work better on some types of E than others. But what drug to use is just guesswork because they just don't know enough to predict it accurately: once he's stabilised on whatever he is on (if it's a benzodiazepine I'd expect that to be a short-term med) then they may try other stuff and then try combinations and some of these meds take a while to kick in anyway. So it's not unusual to take a few goes (six or seven and about nine months in our case) before they find the right meds for him. So don't despair if he's not "cured" right away.

• if you're as far along as getting MRI I think you need to see a neurologist or epileptologist as well as a paediatrician, if you're not already. Epilepsy is complex and poorly understood and a lot of paeds know about treating the easy/simple sorts but if you've got a more "interesting" case you may need more help than that.

Hold tight. (((hugs)))

[caitlinnjacksmummy]

Hi, just wanted to ask everyone's opinion, as u know my son was diagnosed with epilepsy on thursday, but what I am worried about is (and i have just realised this) my partner's mum died 3 years ago of a cancerous brain tumour at age 38, I am now beside myself thinkin thos could be the reason for my ds, epilepsy, so frightened, he is gettn an mri in 1 month or 2, but wat are the chances of this? Does anyone know? Also my partners mum's uncle also died of cancer, unsure if there was tumour or not? I am soooooo worried. Also myself and my partner are 2nd cousins which we only discovered about 6 months after dating, we have bn together now 5 years. Wat do you think? xxxxx

[needmorecoffee]

I would think a brain tumour highly unliekly given all the other things that can cause epielpsy, and there are millions.
But you are starting in the right place, an MRI to see if there are any brain abnormalities like cortical dysplasia, or structural damage. If the MRI is clear they will probably do a genetic/metabolic test to rule out other things.
There are a few epilepsies that start before age 1 such as infantile spasms, Dravets syndrome and benign myoclonic epiepsy of infancy. Make sure you get repeat EEG's. dd's first 2 EEG's showed 'normal' epilepsy with spikes and waves. Her 3rd showed the characteristic hyparrythmia of infantile spasms. Now she's 4 we are having 3 monthly EEG's and treating the EEG rather than waiting for any EEG changes to result in more seizures.

[caitlinnjacksmummy]

Thanks needmorecoffee!! U have out my mind bit more at rest, I really hop t god it's not that....u know loads about this, jack had seizure last nite and nite before, last nite lasted20 mins, was v worrying, so how is your little girl doin just now? Has she had it from birth 2? xx

[needmorecoffee]

20mins!!!! Any seizure lasting longer than 10 needs a emergency rescue med, didn't they tell you that? Either rectal diastat or buccul midazolan (oral)
We administer it after 10 mins and if she doesn't come out of it a second dose and call 999.
dd was born brain damaged so was seizing at birth. Then came 3 months of being ok and she started with myoclonic jerks on waking. This was later dx as infantile spasms. Cured that and then she had one or two status seizures a year till last year when she started myoclonic jerks daily and status seizures once a week. This year its been myoclonics plus complex partials about half an hour after falling alsseep. Pain inna butt.

[caitlinnjacksmummy]

Oh wat a shame, ni the consultant sed that if he ever went unconscious for 5 mins or more then t call an ambulance, that was it, and warned us it could get worse in a years time, he has never fallen unconscious, but his eyes roll, and he jerks sometimes, but as if he is jumping in a sleep type thing and he is not with it, his eyes last nite were still rolling at 20 mins and he def wasn't with it, but his eyes rollong after 20 mins were not nearly as frequent as at the start of seizure but def still rolling, then he fell asleep for around an hour.... its terrible, xxx

[needmorecoffee]

your consultant isn't giving good advice. A prolonged seizure, either where the person doesn't regain consciousness for the entire time or has one seizure after another for more than 10 minutes can be dangerous.
If your child wasn't aware, and therefore conscious, it wasn't good.

[caitlinnjacksmummy]

Yeah that's wat i thot, he is always conscious but not with it for a while after it, it is like he is looking straight thru me xx

[mummypig]

hi sorry coming to this discussion late, sorry to hear about your son caitlinnjacksmummy, my son is 3 1/2 and was diagnosed with epilepsy just before Christmas. He has tonic-clonic seizures, and myoclonic seizures too. His medication seems to be controlling the tonic-clonic seizures as he hasn't had any for about 5 weeks now, and also the myoclonic ones to a certain extent although he still has a few every day. I'm really for you as I know how scary it is when you first find out/get the diagnosis and you have to think it all through before you can get used to what it all might mean.

I also find it very worrying that you said he carried on for 20 mins. How close is your nearest A&E? I'm asking because we took our ds to our nearest one three times before they took any notice and gave him any regular medication. What made them notice was when we told them he had about 20 myoclonic seizures one afternoon, and we were worried he was going to go into another tonic-clonic one. But a few days earlier than that, we were given emergency medication in case his seizure went on for longer than 5 minutes. This was after only the second tonic-clonic seizure that he'd had. So again, 20 minutes is really worrying

... and if he's doing his eye rolling and jerking thing for that long, I wonder if it's actually not a series of myoclonic seizures but may be a different kind of seizure? Anyway, I would definitely call an ambulance sooner rather than later in that situation. I would also get on to whoever you can - consultant's secretary or gp or whoever, and explain that you're really concerned about the epilepsy and you don't think the medications are controlling the seizures. It seems to me that if you don't say anything, they will assume everything is okay until your next appt, and you don't want to be worrying about it for that long.

On the positive side, at least you are getting the MRI and like nmc said that's the first place to start if you're worried about a brain tumour.

I really do remember how worrying it is initially and I am thinking of you. Someone already mentioned Epilepsy Action, which has a really good website with information about the different types of seizures and first-aid advice. Here's a link:
www.epilepsy.org.uk/info/firstaid.html

I also found the National Society for Epilepsy (NSE) website and forum very helpful. They have a special section for parents:
www.epilepsyforum.org.uk/viewforum.php?f=5

hope that helps a little

thinking of you

[michtenstein]

Hi I am also coming in late - i found this when doing a search. Just wanted to let you know that although my dd never had many or as serious sounding seizures as your lo. she wnt onto meds last march and has been virtually free of seizures since then, once the meds where adjusted right and except for colds and temps. I do hope things go well for you. (It is VERY hard in the begining but does seem to get easier as time goes by.)