Epilepsy and behaviour

[whoamiiam]

Hi this is my first time posting on here and was wondering if anybody else had any experience of similar issues. Ds is 3 and has absence seizures and have been told has a generalised epilepsy and photosensitivity. He also has developmental delay effecting mainly speech and fine motor skills. We are awaiting MRI scan, lumbar puncture and blood tests next week to see if there one thing causing all.

He is really contented child and sociable but seems to have real trouble controlling his behaviour in some situations such as at play grps, or when quite stimulated. He gets really pinchy but don't think the intention is to hurt but like he just needs to squeeze like doesn't know what to do with himself! But then other times can just get quite aggressive and behaviour goes wild and it corrulates with either frequent or intense absence seizures (appears to have different types) Can be quite taxing when in company of other children and just doesn't seem to respond to communication, discipline, time out etc on this. Has been on sodium valproate since november but may as well be giving him water for all the effect its had as yet, but neurologist awaitinbg tests before changing meds.

Thanks hope I've not waffled. just wondered if any one had experience or advice on any of this!

[whoamiiam]

Just wanted to add have found time outs etc to not be that appropriate also as ds tends to have a seizure when stressed which i do not wish to cause for him and also renders it useless! So can be tricky!

[DisAstrophe]

Hi whoami

ds has absence seizures, global delay and more recently a dx of autism. He is 7 - we've not got to the bottom of why - MRI is clear. We're awaiting geneticist results.

We've been trying to treat the absences for two years but it is tricky. He was on sodium valporate but that didn't work and made him hyper (well even more hyper and distractible than normal . Now on lamitrogine but keep having to up the dose as it works for a few weeks and then the seizures returns.

School feel that the absences are having a profound effect on learning so it is frustrating but as many many people on here have said: epilepsy is a bastard!

My advice is to keep in close contact with the doctor prescribing the medication and report behaviour and any other effects to him/her. It is hard to disentangle what is epilepsy, what is the medication and what is something else altogether.

What is the lumber puncture for? if there anything specific they want to rule in and out.

In terms of behaviour management I think you have to throw out all the normal rules.

If he is not intentionally hurting but just impulsive when experiencing more seizures it is not going to respond to times etc.

Instead you need to just remove him and give him a cuddle in a corner. Tell him off of course but you keep your language very simple and your tone emphatic but low: "no ds, no squeezing"

What motivates your child? Praise, tiggles, food? Identify that then catch him being good and reward him. If he does 1 minute at a playgroup being gentle or at least not touching go and reward him.

keep posting there is a lot of experience here

[whoamiiam]

Hi zzzzz thanks for your response. Will be great to hear from others who've experienced similar things. Am very lucky as ds has a one to one key person at pre school who is very experienced at working with sen children. They find ds's behaviour a little unpredictable too. Say for example he is also super affectionate on flip side and will reach out for cuddles with random children (usually smaller) when we're out sometimes just passing on the street but then suddenly just pinch them in the face or pull a clump of their hair after the cuddle!

I totally agree with you about chucking out usual rules. Also agree think often does need calming in these situations and will try that instead. Have tried getting him squeezy toy but still puts a lot in his mouth so not that many out there that safe for him to have. At home has a flashy tactile and sometiomes just squeezes pillows.

Do use rewards for other things but hadn't really used in that way so will try that

Think sometimes worrying what others think when we're out i know i shouldn't. But think they may think i'm not dealing with it or am making excuses (especially if he has just hurt they're child) Sometimes its not appropriate to start explaining but feel myself wanting to explain ourselves!

As regards treatments hes on the generic sodium valproate (was on epilim but pharmacy gave us this now was told to stick with it). Not completely sure what the lumber puncture is for other than its to check for any abnormalities in the cerebral fluid and there is a condition where the brain doesn't sythesise sugars correctly which can cause seizures that they're checking for.

I phone the epilepsy nurse weekly to change meds dose and discuss behaviour etc. They just take note and all waiting for tests at mo (cancelled once so fingers crossed this week)

Sorry to hear about your ds and trouble with the meds. Yes this epilepsy is a bit of a shape shifter! Can see with ds that they keep changing quality if that makes sense (he looks different as occuring)

Sorry long post. Thanks for advice much appreciate!

[whoamiiam]

Hi Soz disastrophe though those two posts were from same person (can tell Im new here lol). This behaviour is real tough has not been since change in Meds but think got worse not better. Will contact them on Monday i think.

Just had awful morn with behaviour we were out and he just kept goin for other children. Pulled one girls hair very badly. I just don't know what he can't help and wat is deliberate so hard to know what to do then and be consistent. He clearly can't settle in himself this morning even just wii me.

[whoamiiam]

Oh ds does not stop eating and that does calm him bit too. He is constantly hungry which probably doesn't help mood! Think is coming down with cold which may explain wild behaviour this morning. Just don't really know what to do with him when like that!

[whoamiiam]

Don't get me wrong he is the most adorable lovable child and is engaging and funny with alot of great social skills to. But sometimes it appears though the wiring shorts out a little and i just can't communicate with him

[soverytiredofthis]

Hi DD has had epilepsy since 4 months old, now 3 and a 1/2.

We have very unpredictable behaviour, happy one min, hysterical the next. She is becoming more difficult as time goes on. Portage is helping as is speech. We think part of the problem is understanding, language and communication. DD does not speak much and had GDD alongside. Frustration takes over a lot of the time.

We have tried all sorts of drugs, Carbamazepine, Topirimate, Keppra, Sodium Valporate, Lamotrigine, Zonisimide and Clobazam. DD is currently on daily dose of last 4 as not really anything controlling seizures.

DD was definitely worse on Keppra but everything else same sort of behaviour. Up and down, some days better, some worse.

Nice to hear we are not the only ones that have an unpredictable and interesting time!

[DisAstrophe]

whoamiiam

the behaviour sounds very sensory - does it happen more when he is tired and over-stimulated or when he is bored and lively?

If it is the former then maybe skip the parties and playgroups unless he is on good form and can enjoy them.

If it is the latter thenyou could do lots of tickling and deep -pressure squashing under a cushion or wrapped up in a hot dog duvet before braving the outside world. They're are lots of chewy toys you can buy on SN websites - google special needs and sensory toys.

Also sounds like your ds might be enjoying the interesting reactions he gets from the child and you when he scratches and squeezes if the behaviour is increasing now.

Perhaps try to reduce your reaction as much as possible. Just remove him while apologising quietly to hurt child and parents. Then sit with him and be very boring. Repeat as required.

Some children find the rough and tumble of being picked up and wrestled away from the hurt child rewarding as it is a sensory thing. If this is the case then try to do the rough-housing with him before the playgroup.

If this starts working at home then you can ask the nursery to do the same things as you do.

If you think sensory issues are playing a role then maybe buy "the Out of Sync Child - which will give you lots of ideas. You could also ask for a referral to an occupational therapist who can assist with this.

[whoamiiam]

Thanks for responses. Some really interseting things there. Definately agree with some of those points. Think may be interested in the reaction from myself and other chid now and behaviour is worse when tired and over stimulated. Great suggestions i will try with with ds and will look up that book as i feel he has sensory issues.

Definately need to try to stop my own reacting a little. Feel exaxperated sometimes!

SALT has mentioned occupational therapy so interesting you say that. couple of people have asked if ds is dyspraxic and have asked neurologist about that who says he is not rulling anything in or out at the moment. I will inquire to paeditrician about OT though thanks.

Have had masses of SALT over last 18 months and weekly or fornightly and ds has made alot of progress (probably around level of most 2yr olds rather than 3.5) and uses makaton intermitently to aid his communication. Not sure how much can attribute to lack of communication now but that frustration certainly still exists for him particularly with new people and other children.

Am hoping for him to change from the sodium valproate as now on max dose and no less seizures and have certainly heard alot of bad things about it. It is very hard to know what is the natural proggression for ds and what is caused by the medicine. This pinching etc was certainly evident before the meds but maybe not so bad though. I think some seizures are actually worse now than before he started on the medicine, more intense.

As you saying Soverytiredofthis ds has more difficulties becoming more apparant as time goes on.

Really appreciate all this feedback so helpful not spoken to anyone in same boat before!

[DisAstrophe]

I agree with zzzzz that the most important thing is to get back to the consultant about the side effects. If they are not even controlling the absences then what is the point?

Of course you can't take him off medication without medial advice but I would be insisting on a call directly with the consultant asap.

[whoamiiam]

Consultant Will change med after tests but thinks he Will have better idea what to change to after. Doesn't want to leave him medication whilst await tests in case worse.

[DisAstrophe]

Does this mean you got to speak to the consultant rather than the nurses?