Epilepsy

[mwells21]

My 5 year old has been diagnosed with some form of epilepsy (though what we are yet to be told) and hospital taking a 'watch and wait for the next one' approach. This may be fine for them but for me it's terrifying as he has had both absence seizures and a tonic clonic seizure. We have had an abnormal EEG but they have yet to divulge what this may or may not mean in terms of him having epilepsy or the impact on his future development - he is super sharp and a real force of nature so I'm finding it difficult to reconcile the fact there may actually be something wrong with him. My biggest fear is missing a tonic clonic seizure at night (currently he is sleeping with us) and I'm unsure if we should push for a more formal diagnosis and seek a second opinion, any advice please would be most welcome! xx

[Sickandtired14]

I don't have any advice. But hugs

I was petit mal epileptic as a child, only ever had absence seizures. Hope you find out soon, I can imagine the worst part is the not knowing. Don't resign yourself to thinking something is 'wrong' with him, it simply means that from time to time something misfires. I grew out of mine. Haven't been on meds since I was 14.

[adoptmama]

Yes push for a more formal diagnosis/better information. My DD also sleeps with me as she has generalized seizures at night and also simple partial when awake.

Epilepsy - and the meds - can have serious impacts on development e.g. memory worse after seizures etc. If he is having absences at school he will be missing information/suffering from disruption to his learning. You need much more information than you have. I don't think it is acceptable for them to treat you in this way - have they even discussed medication options with you? To say 'wait and see' even though the epilepsy progressed from absence to TC is not acceptable.

Push for much more information from the neurologist and/or demand a second opinion. Epilepsy Action is a very good web site.

PM if you want.

[weirdthing]

Are you waiting to see a paediatric neurologist? If not, you definitely should be.

My DS (now 8) has had nocturnal seizures since birth but despite our constant visits to the GP and twice to paediatrics, he only got a diagnosis when he had his one and only day time seizure (full tonic clonic). He was on epilim which didn't agree with him at all so went onto keppra which has been great (but has to be supplemented with lots of vitamin B or he gets very angry). He is doing very well now and ha been seizure free for 3.6 yrs. We are now letting him outgrow his meds (under a lot of pressure from the paed, I am still not sure about it) to see if he still has epilepsy. Apparently 50% of chidren with epilepsy will outgrow it though it depends on the seizure syndrome too. There is no reason for DS's epilepsy and all his tests have been clear. He was having a seizure literally every other night from birth. Anyway, I just wanted to tell you that your son can have a good life with epilepsy. My son is happy, clever and cute. His epilepsy doesn't bother him in the least. (It has been appalling stressful for me, mind you :) )

In terms of safety, I think you are right to have him sleep with you. We do too. We were recommended to try to video his seizures to aid diagnosis. Also don't let him be near water on his own.

[adoptmama]

weirdthing which Vit B supplement do you use? Looking to give DD B6 supplement for the keppra - not really getting the 'keppra rage' but am definitely seeing her as more prone to outbursts. Keppra is giving good seizure control for us, but I am seeing a detrimental impact on memory in particular :( Looking for liquid B6 rather than capsules or gummies if you can recommend. Also how are you calculating a good dosage of Vit B? Are you going by weight of your DD?

[adoptmama]

sorry - your DS

[weirdthing]

Adoptmama - I used to give him a smaller 'full' vitamin B children-sized one but he is a big boy - 8 but in size 10-11 clothes and a big build, He started to get these rages which were very out of character for him - the colour in his face would change and a redness would rise up over his face - once he threw a plate and smashed it against the wall. He was sobbing that he couldn't control himself. I decided to experiment with giving him more vitamin B - adult dose (just a Tesco vitamin B complex capsule)and sure enough all those weird rages vanished. He still gets cross but just in a normal little boy way and no changes of colour, violence etc. He has done well being seizure free on keppra so I am reluctant to change it at his point. I haven't seen any intellectual changes - DS is very bright.

[weirdthing]

We also give him a one a day fish oil and a magnesium supplement and a child-sized multi-vitamin including vitamin D as I have read up quite a lot on these things and they are all meant to improve brain function.

[adoptmama]

Thanks, yes I am thinking of starting her on fish oil and read about the benefit of B6 being good for the mood swings/rages keppra can cause on one of the epilepsy facebooks groups. She's not good at taking the gummys so looking for a liquid variety of both that don't taste bad - or at least not worse than keppra! DDs dosage was increased quite a lot recently and I am definitely seeing more issues since then :( especially with her memory - she seems to have lost the ability to consistently do things (identify colours, numbers and letters) which she could previously do. She also has problems finding the word she wants when she is speaking and her speech gets stuck and she keeps repeating the first half of her sentence without being able to finish it. Wish the companies that made these meds would re-evaluate their side effects and not be so accepting of their often horrendous impact on a child's development. DD is falling further and further behind her peers and I see no way she will catch up whilst on this medication. Also finding it very hard to make the school understand it is a genuine medication side-effect and stop them writing DD off as 'just a bit below average really.' :(

[weirdthing]

Aw that is so sad :( Mind you, now you mention it, DS gets 'stuck' in the middle of his sentences too. I thought it was just him being particular about which word he wanted to use next. Hmm.

[weirdthing]

I home educate DS now (he would be in Yr 3). I got sick of trying to explain things to his teachers - they just did NOT understand at all. In fact, to be honest, no one bloody well understands :( I have given up trying to explain my worries etc to people as outwardly DS looks fine and therefore I think I am written off as neurotic.

[adoptmama]

yup, if they are not having a TC in front of folk they think 'hey they have no problems'. DD mostly has simple partial (and her generalized seizures are when she is sleeping) and I have lost count of the number of times people have - well-meaningly - commented that at least she doesn't have 'bad' or 'real' seizures.

Seizure is a seizure is a seizure folks. Different types present in different ways but they're all brain seizures.

[Willdoitinaminute]

DS was diagnosed with nocturnal epilepsy last year. He had one witnessed grand mal and diagnosed formally a couple of months later. Like you I was on constant alert at night and became exhausted through lack of good sleep. For a week or two he slept with me but gradually we have returned to normal. He has his own double bed and we place pillows around to act as a bumper. His bed is an old iron bedstead that makes plenty of noise so we would wake rapidly if he started to fit. So far he has had no further grand mals.
As far as medicating, after a lot of research I wasn't keen to medicate unless he was having frequent seizures since the meds are likely to cause more problems with academic progress than the epilepsy in his case. His paediatrician preferred this approach. It depends how confident you are at dealing with the seizures. The seizures do not cause damage to the brain, damage occurs when they sustain physical trauma to their head while seizing.
Although he probably still has abnormal activity throughout the day his teacher is aware of the impact and allows him more time to finish work without making a big deal. In fact she has been great. She has worked out that he is better sat at the front so he doesn't have any visual distraction.
Up till now he has been a high achiever and we didn't want him to become demoralised by the fluctuations in his memory. School have handled it brilliantly. The teaching staff know about the epilepsy and go out of their way to normalise everything. He will be going on a 3 night residential next term and school have no issues with this. The school have a full time matron/nurse who goes with them. I have a good relationship with her and feel confident that they will deal with any problems.
He plays football,rugby,cricket,karate and swims. The only thing he needs one to one supervision is climbing (thankfully he's not keen on climbing) and he can't sleep on a top bunk.
Sorry for the long post but we are now nearly 12mnths on from where you are now. I was so frightened and pessimistic about the future 12 mnths ago but we have accepted he may have further seizures and we will deal with it if it happens. We have been told he will grow out of the type of epilepsy he has, but in the meantime everyone who needs to know is now aware of how to deal with a seizure so that life can be as normal as possible.

[weirdthing]

Willdoitinaminute - do you know about seizure pillows? Also the reason I am in favour of meds is because if they go seizure free for 2+ yrs then they can withdraw from the meds and there is a 50% chance of them being seizure free from that point on. That won't happen if they continue to have seizures. Also, are you not afraid of Sudep? I worry about that a LOT.