Ds, 13mnths has severe epilepsy...pls say someone else in same boat..........

[caitlinnjacksmummy]

Hi, my ds,13 mnths is severe epileptic, takes at least 1 seizure a day, usually on going to sleep at night or he will fall asleep and wake approx an hour later and go into a seizure, no control over how bad it will be, he has fallen unconscious twice before, more recently tuesday this week and was rushed to hospital(nothing new there), but he has also now started seizure after bringing him out the bath....and at night time just now he is very hyper active(although visibly obvious he is shattered), but unable to sleep until approx 2am, this is every night just now. Consultant thinks he has sever myoclonic epilepsy, although he has mri this monday, dreading it, consultant also thinks that his brain hasn't developed properly, praying this is not the case....he is behind in development, he is only rolling, and only from about 3 mnths ago picking up toys and passing them from one hand to another, before, he culd not physically even reach for a toy, he cnnot sit up and is very floppy, but Otherwise alert. Consultant thinks lack of development and epilepsy is coming off something else(dread to think wat this means), his seizures can be very bad, and mostly are to be honest, can last up to 40 mins, have rectal diazepam for emergencies, but does not always work and if it does sometimes takes a while, he is also on nitrazepam 4ml morning and night and epilim 3ml morning and night. Anyone help me out with similar case scenario or some support?

Hi there CJM.

DD1 has severe E. I'm not going to be able to give you an "oh it will all be OK" story because it isn't entirely. But her E is more severe than your DS1 so you can't necessarily say.

E (very broadly) seems to fall into 2 groups:

1. the sort that is probably genetic rather than caused by a brain problem. There is a chance they will just grow out of it, and it tends to be controlled by meds fairly easily.
2. the sort that is caused by damage of some sort to the brain. It can be quite a small amount of damage to a specific area, so it doesn't have to mean much, but then again it can be associated with other problems.

MRI will hopefully tell the difference between 1) and 2) and maybe the subtype. They need to know because there are lots of meds and some work better on different types. Though it's still quite trial-and-error. It may also explain some of his other issues though bear in mind if his other symptoms are all motor it may just be that specific area. An issue with MRI though is that some neurological problems cause slow maturation of the brain and an MRI at this age may be inconclusive and you may benefit from doing another one say in a year's time.

Drugswise - as I say, it's trial and error. At worst, DD1 had 108 motor seizures a day, on 3 different meds plus alternating different emergency meds every 2 hours. She would routinely go into status and stop breathing. Her longest seizure was 4 hours. Nothing seemed to be touching it and those were very dark days - the darkest being when the only way to stop the seizures seemed to be to put her in an artificial coma and she had to be blue light transferred to a hospital with better intensive care.

But then we had a miracle: we finally (after months of trial and error) found a combination of meds that got things under control and now her seizures are probably every few days. She's on very high doses but we're very gradually weaning her off some of them.

Developmentally, things are bleak because her underlying problem is complex and affects at least 2/3 of her brain. But as I said, you can have E caused by a relatively small area of damage, or by no damage at all - so you can't really extrapolate.

There are children for whom the drugs don't work at all - there are other solutions such as a special diet (hard work but a cure for some) or surgery (not as scary as it sounds, I've spent a while on paediatric neuro wards and the kids bounce back amazingly).

We've been through a lot but the Epilepsy was definitely the hardest to deal with. It's horrible to watch and the slow process of diagnosis and medication makes you feel so helpless.

I would recommend a specific site for support - the National Society for Epilepsy forums have a quite active parents' forum where there are a lot of other mums and dads in the same boat.

Good luck for the MRI on Monday. It's a lot harder on you than it will be on him.

Thanks so much for yr good advice and educating me a litt more, so scary, just as u replied Jack my DS took big seizure, now the scary thing is that he 2 is now breath holding and going blue and sometimes to point of unconsciousness........it has changed so much and that is the scry thing, I hope u continue to have good luck ....... feel free t drop me a message, my e mail address is [email protected]. Would appreciate someone to talk 2 in a similar situation xx

Hey, thanks for replies, I am particularly upset n weepy today, Jack just seems to be getting worse...epilim is not doing anything for him at all.......when he was put on nitrazepam he was seizure free for 8 days, so at least we saw some kind of improvement, but now seizures have changed again, more severe recently, breath holding and going grey for long periods and blue round mouth, I really thought he was going to die today felt my heart would stop, so hard t deal with, knowing there is nothing I can do 2 help, and obviously still to get mri on monday and just so scared that he will have lots of other problems 2, and of course my true real biggest fear is that he will die

Sorry you're having a rough day CJM.

According to our epilepsy guy, the issue is that the brain is maturing at this age and starting to make more connections between the brain cells. Epilepsy is sort of like a "mexican wave" - if all the cells are well-connected and work together, you will have a more severe seizure. We had exactly this - DD1's seizures started at around 9 months but got out of control around 14 months and we had I guess six harrowing months after that of trying various meds to get control. It's not usual to take that long, but the problem is that so many of the meds take ages to build up to the right dose and then take ages to work that a proper "trial" can take many months and meanwhile things are just getting worse... I know exactly how you are feeling right now. I, too, thought we were going to lose her.

We found Epilim useless on its own at first. They tried adding various things in ones and twos; most ineffective. But, interestingly, she seems to have grown into the Epilim as her brain gets older: now if you reduce the Epilim dose she will get seizures. And of course it's one of the really safe ones so they don't like to withdraw it unless they are absolutely certain it won't work.

Are you in and out of hospital at the moment? Because if he's stopping breathing in seizures that's not a good thing to have to deal with at home - though of course you do, don't you? DD1 used to do this and we would be not just timing the seizures but also timing how long she stopped breathing for - because over a certain time of course you give diazepam but if you give diazepam you ought to go to hospital anyway and that's a whole new nightmare - just the logistics of having a child that age always in hospital who needs to be watched constantly in case they stop breathing. We had 3 of us doing shifts, taking it in turns to sleep.

Have they tried steroids yet? DD1 was on Prednisolone twice in that period. It's another short-term drug, it's not safe to give for longer, but is very effective when it works and might give you a couple of weeks' break while they are working out what to do.

So sorry you're having a difficult time. Thinking of you.

Thanks guys, yeah it is a nightmare, we had good night with him, as recently bn very hyper active at night and shattered but unable to sleep, hospital stays was every week nearly but not bn in to stay for roughly 3 weeks, although ambulance dash on tuesday as he had one and looked very drunk after one eye droopy, so called my mum but as i was on the phone his eyes seeemd to recover, so went out room feeling he was ok, went to get quick wash in case we had 2 go 2 hospital(was still in my jammies), wen I came bk in he was on his side on the living room floor , was unsure if sleeping or not so called his name, no response so began shouting his name(I mean REALLY shouting) and still nothing, so immediately called 999, and wen we went thru his blood sugar was also low(first time this has happened, think it was 3.7)but he recovered to normal self and they sent us home as he has his mri so close and no point putting him into hospital, drugs cannot really be altered or changed cos might need to be changed again after results of mri...also with this seizure Jack breath held for longer than usual, still just 10 secs but very scary, he always did this but much more severe recently, and yesterday was jus continuos which is more of a worry, also have a daughter, 6 and a half so very hard

Hi,

I have a son who is 2.6. He was dx with Infanitle spasms at the age of 5 months andn then Williams syndrome at the age of 8 months.

As soon as the IS started he was started on Prednislone which worked for a short time and in between dx and now he has tried a number of combination of meds. We are so lucky that he has been seizure free for 15 months. I twas vigabtrin and Epilim that worked for us. We have just finished weaning the vigabatrin so he now remains on the epilim.

Epilepsy is shit- I hate it. It was hard as my son started to become aware fo the seizures. Im so grateful that we achieved seizure cntrol but am not naive enough to think that they could return in a different form.

You'll find fantasitc support and advise on here from some very knowledgable people. YOur certainly not alone.

We have a fantastic neuro and I hope you have the same kind of support.

Hi LOurobert, we are just bk from an mri, so worried about wat results will be. First mri, had eeg which showed abnormalities, unsure what yet.....nightmare. Have read many good reports of seizure control with vigabatrin, got appointmebt with consultant tomorro morning so gonna suggest it, cos at the moment not working on nitrazepam and epilim....getting bloods done tomorro(dreading that) and urine sample. Really hope results of mri are good, and that we get it under control, is a major worry just now, seems t b gettn worse.......and wat a shame yr litle boy started realising during a seizure, I 2 recntly have bn wondering if Jack is realising sometimes too

Its a shitty shitty scary time. Im grateful that we managed to get seizure control fairly quickly but so aware that it could come back at any time.

My ds had one MRI which was clear but that was some time ago Im not sure if they are planning to repeat it and Im not sure if its really worth it as my son also has the dx of Williams syndrome. WIlliams syndrome isnt usually assocaited with seizures but we got the double whammy- lucky us!!!

I did alot of reading and reserch and wasnt afriad to question our neuro's thoughts about what meds to try next etc.

Thoughts are with you during this horrible time, remember there is so much knowledge on here particaulrly around seziures, i will always get an answer if I post a query.

Let us know how it goes

Hi all, nice t hear from u all, Jack had mri yesterday and had blood tests today, consultant sed he is worried as jack's head is not growing as it should be? It is growing, but has n't changed loads since he was 5 mnths, which he thinks indicates that brain is not growing propely. We r worried sick...wat the hell does this mean? Can anyone help? Or anyone else bn told this? x

Hi, we get results maybe in few days, but def by 2 weeks, do you think this is something to worry about? What does it meAN? XXXX

Really?! You had mri bk that day?! That is good...you hve made me feel a bit better saying yr dd has understanding and tuff age appropriate....wat he sed was Jacks head smaller than normal which is a worry he sed hasnt chnged all that much since he was 5 mnths old, n this makes him think brain is not growing properly... Jack is severe epileptic and is bit behind, cant sit up, very floppy, but rolling, and now crawling ever so slightly, understands things recognises people, gives kisses etc, so i am somewhat confused, and of course, terrified

Hugs for yr dd...and you of course, it is terrible, consultant says he def doesn't think jack has cerebral palsy, trying hard not to worry, but soo hard and the fact that ghe says he thinks brain is not growing properly......really hope he is wrong, I am hoping he just has a small head, he did sy it is growing but not as well as they would hope...was at my consultant today and he sed mri should b back in few days, if it is he will call me, if not he will see me in 2 weeks for appoinytment xx