Parents of children with epilepsy.. can you come counsel me? (please x)

[SleepyJess]

Hi

I had a couple of threads going on here at the beginning of June started by my friend Elbell and my sister posting under my nickname letting people know where I was and how DS was doing when he has his first ever siezure on 31st May. I don't know if anyone remembers.. I added to the threads when we got out of hospital and everyone was lovely.

Well, after hoping against hope that it was a one off, DS had another this morning .. (despite being on Epilim) and so it looks like it is epilepsy after all. I was wondering if other folk with experience could counsel me a little. I have joined a site I googled.. but it all looks scary.. so I thought I'd come here where I know people..

As some will know, DS (Alex) is 5, has 'dystonic cerebral palsy' (description, not diagnosis) and the first fit was very terrifying and dramatic! I found him fitting alone in his bedroom in the morning.. probably had been doing so for some time as his lung had collapsed!.. and he didn't respond to the rectal diazapam that the paramedics gave.. nor the next lot in A&E. He was eventually given something stronger down his line.. slept all day.. and was put on oral phenotoin which we had to gradually weaned him off and onto Epilim. (Tocut a long story short, re the nightmare hospital stay.. him fighting IVs etc etc.) We were told it may not happen again, but to be aware that any degree of cp-type illness often comes with epilepsy but that it should be controlled with the Epilim.

When it happened again this morning, it was much less dramatic and a bit less scary. I heard him make a slight 'heaving' sound or something at 6am and ran to his room (don't think I have relaxed completely since last time!). He seemed fine.. was sitting inside his gate holding a book, so I scooped him up and carried him to his bed and got in with him. We had a cuddle and I thought he was falling back alseep but as I crept out of bed again, I saw his eyes were open and unfocussed. I sat him up and he was just not 'there' really.. (He is usually very alert once awake.. and off into everything) so I took him to our bed, woke DH up who agreed this was a fit.. or about to become one.. (even though Alex seemed partially 'there' although did not seem to be able to look at us at all.. normally eye contact is his 'thing'.. but he was kind of mumbling about breakfast as he normally would.) He wasn't convulsing, but I rang the ambulance and as I did so the seizure started. The 999 service told me not to give the rectal diazapam until he had fit for 5 mins.. but it was stopping after 4 so he didn't get any at this stage although I wish I had just given it now regardless! Altho he stopped convulsing, he was still 'away with the fairies' and unfocussed.. his eyes seemed to keep trying to focus and then sliding sideways all the time.. different to the first fit when his eyes were just half open and rolled upwards.

The ambulance came and off we went (no sirens this time!) and he was the same in the ambulance.. I kept talking to him.. got a half smile once I think.. I felt he could hear me but couldn't respond. At the hospital they said he needed the rectal diaz. so I gave it to him (to prove to myself I could do it!) but soon went into another proper fit. He was given more.. stopped fitting.. went completely to sleep.

He slept a lot today at the hospital, threw up his lunch, had a slight temperature.. but finally came back to being himself, has some toast and we are now home and he is in bed.

So I guess there is no getting away from it.. this is epilepsy. They have upped the Epilim from 4ml 2 x day to 5ml 2 x day. He had an EEG (normal) and CT scan (normal) at his last admission but still waiting for the MRI. They also today said he had a slight heart murmur! Of all the things Alex has going on.. I have never been told this before despite his many and frequent examinations! They said its highly unlikely to be 'anything' but will do a scan on an outpatient basis 'if we wanted'. (We wanted!)

I suppose really I am posting to ask how you all cope with this epilepsy thing hanging over you. I have lived in fear to some degree since last time.. but now my hopes are dashed off a 'one off'. How likely is the medication to 'work' this time.. or is it really very likely to need juggling and/or having other drugs added to it?

And both these fits have occured upon waking.. and the doc today told me this is quite common.. does any else's child do this?Is it likely to 'only' happen when he wakes, in his case? I am back to sleeping on the floor beside him like I did last time.. even though we have a baby monitor with a screen now!

We haven't even seen an epilepsy nurse yet... she is on holiday for the whole of Aug.. but she kindly (!) gave me over-the-phone instrucs. re the rectal diaz. before she went.

I feel a bit scared and abandoned although am glad to be home and not exactly panicking.

SJ x

[SleepyJess]

Would people mind bumping for me until the 'applicable' people see this? Thanks loads xxxx

[maddiemo]

No advice, but sorry to hear this, SJ.

[Aimsmum]

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[heartinthecountry]

hi sleepyjess - my dd has epilepsy so I know to some extent how you must be feeling. She has a particular type of epilepsy (infantile spasms) which don't look quite as frightening as a tonic clonic type seizure (although are very serious).

She does usually have seizures upon waking - i think that is quite common. It is when the brain is going from a relatively inactive state to active so that triggers the seizures. I slept next to dd for about 6 months after first diagnosed and still do at times when her seizures are worse. She can have seizures out of the blue though (sorry prob not what you want to hear).

I think getting the medication right can take time. But there are lots and lots of different anti-convulsants now and they are getting more sophisticated so I am sure there is every chance you will manage to find the right drug or the right combination. are you under a good epilepsy paed?

as for living in fear - well, I have to say I don't think I will ever really 'get used' to seeing my dd have a seizure. But after 2 years it no longer panics me. You get used to reading the signs and know when the seizure is a big one that you need to deal with and when it will pass. Well done for doing the rectal diazepan - at least now you have done that once you will feel more confident if you need to do it again.

You know that you can get epilepsy alarms? I would imagine you will want to sleep with your ds for a while but there may come a point when you feel more confident about leaving him. An alarm might just give that extra sense of reassurance.

Have you joined epilepsy action? they have a good newsletter with up-to-date info about epilepsy. There was a recent article in it about using oral klonapin as an alternative to rectal diazepan which I am going to ask our consultant about.

It is scary. For a long time I was scared to leave my dd at all. A friend once commented that I never took my eyes off her. But as her seizures have become more controlled and I feel more confident that even if she has a seizure she probably won't need intervention then I now am happy about leaving her. I am sure you will get to that stage.

Feel free to CAT me if you like.

[SleepyJess]

Thank you Bethron and HITC.

I am irrationally panicking now. I am scared to go to bed and scared to sit here looking at him on the monitor. (DH long since gone to bed as we had a v late night and v early morning following by horrid day so both knackered.)

[lynny70]

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[SleepyJess]

Bethron, don't apologise.. you are putting stuff into perspective for me. Thank you x
Lynny your post has made me cry.. (but in a good way.. kinda).. and I don't cry!

[lynny70]

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[nathollyandmatthew]

hello i know how ur feeling my son matthew is 13 months and had his first seizure at 8 weeks old, hes first eeg and ultrasound of his brain was nromal, he then went 7 months tonic clonic seiures free, but would have little shaking episodes where he would stare and then start shaking this only lasted a few seconds, this was diagnosed at chistmas as benign rolandic childhood epilpsy and would need no medciztion or further help

at 8 months old he started having generlaized tonic seizurews again, was admitted had a eeg again which was clear hes also had a ct scan

it is very scarey to see ur child go through these seizures

the medciation has to be right, they may not take the seizures away completly but can reduce them

we have our first app with a nerologist on thursday at greta ormond street

some children r more prone to seizures when they wake or when there alseep and wont have them any other time, matthew has seizures any time of day, not seen him have any when hes asleep so im not sure if he does

if u eer want to talk im here i know how it feels to got hrough this all, we have been in and out of hospital with matthew since he was born, not just for his epilepsy but other probs to

my email addy is [email protected]

i dont think anyone copes with this epilepsy in ur children, u just learn to expect that ur child may have this for life and it is horrid, but take each day at a time,

matthew went 6 weeks seizure free from when they started bad again, then got the siezures very bad again, but now we r on week 4 of no seizures hes on 3.5mlx2 daily of epilpm we have rectual dizepam but been told not to use it yet

i hope all goes well for u, when i see the nerologist if i have any good info i will let u know

also have u considered buying a book on childhood epilpesy we have one and it has relaly helped understand it as we dont get many answers from our local hopsital

take care and im here ok

[dizzy34]

Hi, I know exactly how you feel. My son started having seizures at 6days (we think he had them from birth). He was admitted into alder hey at 6days and four days after that was having upwards of 200 seizures per day.
He is resistant to most anti epileptic meds, most aggravate his condition and substantially increase the seizures. All of his Mris, Cts, ultra sounds, metabolic, chromozone, genetic tests and muscle biopsys have been clear. His eeg is abnormal. He is now on two epilepsy meds, one is not licenced in England and is called stiripentol and the other is keppra. Even these have not stopped his seizures and he can still ahve 100plus on a bad day and up to 20 on a good day. Harry is very unusual though and his condition is very rare. There are only about 14 ish cases in the world and only one other child in England with it. Its called malignant migrating partial epilepsy of infancy.
It took us ages to come to terms with Harrys prognosis. Infact when he was first in hospital and 'epilepsy' was mentioned i thought i could never accept the diagnosis or cope with a child with the condition. Then i came to terms with that and thought , well i can cope with epilepsy but not other special needs. Then after a while, we realsised that Harry wasnt even going to sit up, or indeed hold his head up. He will never say mum or dad and never reach for our hands. He is quadriplegic. His development is assessed as that of an 8 week old baby and future prognosis is poor. We now realise how lucky we are to have Harry and wouldnt swap him for anything. Every one who spends time with him has been changed in some way by him.Never the less, i definatly went through a 'grieving' period where i grieved for the childhood he wasnt going to ahve and for the child i thought i had. Even now if i think too deeply about it it still hurts physically.
It takes a while to get used to when to use rectal diazapam and in the end you will confidently go with your instincts.we dont go to the hospital for Harrys seizures now because he has so many. we have all the equipment at home and its easier for us to cope at home. i ahve some good books if you would like them, they were written by our consultant and have been very useful. a good website is
www.kidsepilepsy.com Harrys story is on there under his name. its good to contact other parents and i have made lots of good friends for support.

I have just re read this email and hope that i dont come accross as a know it all, or that i am preaching. i just remember how lonely i was at the time and how much i wanted to hear off other parents. My email address is [email protected] if you would like the books.

Love Denise

[dizzy34]

Sorry, i just wanted to add that most of Harrys seizures occur when he is going to sleep or waking up. When he was younger they happened any time of the day or night. I think that was because he slept more in the day when he was younger. Even now, the more sleepy he is the more seizures he has. That is the downside of the rectal diazapam for Harry. it makes him drowsy so he has more seizures, so then he needs more diazapam etc, etc. Our hospital has been fantastic and we can contact the consultant by phone whenever we are worried.
Also Harry is now on the ketogenic diet and this has definatly helped him. Have you seen the film 'first do no harm', it is fantastic and based on a true story about a little boy with epilepsy. i have it if you would like to watch it.
Out of all the advice i could give you based on my experience is take every day and every problem as they occur. Try not to think too far ahead to the next problem otherwise you cant get over them. And lastly, read up as much as you can about the condition, medications and side affects, write down any questions and dont be afraid to challenge the docters.

Denise

[Carla]

sleepyjess, someone is going to say ... and I don't blame her for it ... read the whole thread before posting.

Haven't got time to say all I want to, but my last epileptic fit was at age 11. Spent days in GT Ormond Street Hospital, hours with probes stuck on to my head ... but I've never had one since.

It got me off PE, and, if there's a positive in there, that was it for me.

Chin up for you and yours. XXX

[SleepyJess]

Thank you nathollyandmatthew and dizzy and carla. carla.. what do you meaning about reading the whole thread? I am being thick and didn't get that bit!

Lynny I am not too bad today.. I think it is a bit of everything getting to me.. and the epilepsy has just made my brain say 'no! Too much' (there is a lot of stuff going on at the moment.. sister ill etc... and when anything else happens to the kids, I worry more about DS1 who has CF..and the future.. even though he is well, touchwood)

I have joined Epilepsy Action.. altho can't seem to find how to get on their forums yet.. maybe my membership has to be processed first. I would also like to watch that film Dizzy.. but you don't have to send me your copy.. (thanks though)..I will try to get hold of one.

Am trying to psych myself up to sleep in my own bed tonight.. I think having my on the floor next to DS just disturbs us both.. plus the air bed went down (!) AND DS decided to sprinkle blackcurrant over my back at 5am! (I was dreaming it was raining.. !)

Thanks for all the support.. I really appreciate it. I will keep refering back to this thread as there is already lots of good info in it.

SJ x

[Fio2]

I think carla is on about herself, not reading the whole thread first before posting ........

[anniebear]

Ooooooooooohh!!!!!! I also wondered!! lol

[dizzy34]

I was wondering about reading thw whole thread first as well??

SJ- i still sleep with Harry next to me. we are just having an extension built and i will be putting my bed next to his again in it. I dont know if you ever truly relax, i think we have just 'got more used to it'.

Denise

[dizzy34]

Bethron,

Thanks for your comments. I dont feel strong. I dont like posting very often about Harry because i feel as if i am saying he is worse than others. I never know whether to let people know my experience of epilepsy because it is so extreme and so rare, but that is how it is for us. Epilepsy is frightening for everyone isnt it. Harrys seizures only last about 90 secs -3mins, the dangerous thing about his are that sometimes he has one every few minites. What epilepsy does your son have.

Denise

[lynny70]

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