epilepsy

[LittleOrangeDog]

Hi

I am new to the site and am looking for other parents of children with epilepsy for advice / support. My DS is 3.9 and has started having seizures. He had one fit a few weeks ago which was the scariest moment of my life ? his body went rigid and he fitted for 2 mins before falling unconscious. We called an ambulance and went into A&E who said it was probably one those things ? apparently lots of people have one off fits.

After that he?s been having lots of little seizures several times a day so we ended up back in A&E a week later. The little seizures only last for a second or two and vary from looking vacant to suddenly dropping to the floor or very short full body spasms. To be honest I wouldn?t have recognised them as seizures before all this started, I just thought he was being a bit clumsy, but my MIL insisted we went to A&E and got it checked out. We were then admitted to the children?s ward for a week where they monitored him and worked out that he was having an average of 10 a day. He?s now been started on Epillim and they have dropped to around 5 a day. His dosage will double after a week and then hopefully they will be gone.

However I also have concerns around his medication. I realise he needs to be on some medication, but am concerned about the long term effects on his development of being permanently medicated and wondered if anyone has any experience of this? DS has always been ahead developmentally. Since he started on the drugs his behaviour has got weirder and more difficult, although the seizures seem to have got less. This morning he had a 5 minute conversation with someone who wasn?t in the room ? answering questions and chatting just as if someone was there, which really freaked me out. He is also more hyper, defiant and very very hungry, which for a boy who was always hard to feed is very out of character.

I am aware that it is all very scary for him so the defiance may be fear. He is definitely sick of being watched all the time and keeps trying to walk up the stairs by himself ? something I had no problem letting him do a few weeks ago, but now I am afraid he will have a drop attack on the stairs so we are holding his hand (or trying to) as he goes up and down the stairs. I have also moved his booster seat into the front passenger seat of the car so I can watch him whilst I drive, and when he saw it was still in the front this morning he said ?oh I?m still sick?. It breaks my heart as it must be so confusing for him and I am really worried it will affect his confidence.

The hospital have been great, we are being referred for an eeg, mri and have an appointment with an epilepsy consultant in 6 weeks and in the meantime I just have to watch him and monitor his behaviour. However I really don?t know what I?m looking for. I?ve called the helplines for the epilepsy society and epilepsy action, and they were helpful, but they aren?t medically trained so can?t give me any real answers. Basically it all seems a bit woolly and ?everyone reacts differently? so you just have to wait and see. So I wondered if anyone else was going through this, or has been before and what your experiences are?

Thanks x

Hi there I have had epilepsy since childhood and been on nearly every medication going with side effects ranging from pyschotic episodes to wright gain to weight loss to insomnia. With epilim I put on a lot of weight and when they increased the medication I became quite spacey and tired. Tiredness is a major side effect of nearly all epilepsy meds.
It may be his dosage is too high so worth talking to his consultant , at 30 yrs old I have only just now got my seizures under control and found a medication (topamax) that doesn't cause me awful side effects so it really can be trial and error.

Also as he's so young other things to look into is stuff like the ketogenic diet which has good effect on kids.
Good luck

Sorry just noticed you said his hunger has increased that will be due to the epilim which is why the drug causes weight gain as it increases the appeitite so its something to keep your eye on.

My DS is 5 and was diagnosed with epilepsy at 3.5 and some of your experience sounds very familiar. For us it was totally 'out of the blue', he was developmentally fine and very rarely ill and it all came on very suddenly and aggressively. DS has absences, myoclonic and drop attacks but never had a tonic-clonic seizure (although we're warned it's possible). We've been through side effects to all of the drugs he's had, we were in hospital this week with more - but for each one the medication was fine until the dose was increased to a point his body couldn't tolerate. He's now on 3 drugs and his myoclonic and drop attacks have been under control for about a year, he still has absences and his appetite is terrible!

In our experience DS does have periods of odd, quite manic behaviour when he's started a new medication. He's had plenty of those today! And although he can sometimes be anxious about things to do with his epilepsy (his co-ordination isn't always that great so he finds some PE lessons a bit of a trial for example) he is still making good progress at school and is able to do pretty much everything his friends do. This has taken some time and a lot of medication but it has worked. The 'trial and error' nature of his drug therapy is the hardest thing, we're constantly fiddling with doses of medication to try and improve things and it's hard to know sometimes whether it's doing any good.
We've come a long way in the past couple of years with brilliant support from hospital and from DS' school - it was all very sudden and frightening in the early days of his diagnosis and what you're experiencing now is very very difficult. I have no idea if this is helpful or reassuring in any way, although I do mean it to be!

My Dad had epilepsy all his life and dealing with the drugs is the most challenging aspect. Once they find a drug and dosage that works things will be easier. One drug worked for him for 25 years but then it started to become toxic in his system, I don't know why. After that he had problems settling on one which suppressed the seizures but didn't have bad side effects.
He led a completely normal life, had a good career as an academic, no one knew he had epilepsy apart from his family. (there was a stigma attached to it in the past)