Autism and absence epilepsy
Things are currently good with oscars general mood and absences, he’s currently on the correct dose and it just makes life so much easier ,we can function at a reasonable level, no abscences in school for two whole weeks now which is fantastic as I do worry about that when I’m not there , hopefully we complete the term on a high ready for Christmas .
Oscar is medicated for absence epilepsy but not yet diagnosed, he will have another EEG at around 7 years old, like everything it’s never simple , he has had one EEG ,but it failed the lady completing the test said she wasn’t willing to continue as he was so distressed , Brendan had to hold him between his legs while they attached at least 30 electrodes to his head , he had long hair at the time and he had glue all in his hair , he was having waves of fighting then ,Giving up it was heartbreaking but I held my nerve as I really wanted the results, but we were unable to complete, during the test he needed to be calm so they could trace his brain activity however he was so distressed it’s no wonder it failed , and they wouldn’t have gotten a correct reading anyway it was pointless to distress him further .
i feel as parents of children with health issues we get used to being in that got to be cruel to be kind mindframe it’s really hard but needs must , you have to put your sensible head on hold your breath get it done , then deal with it after .
what lead us to exploring if he has abscence epilepsy is ,since a baby he has always had periods of daydreaming / switching off and zoning out and as he grew, in play he would get sidetracked and then head but the floor, he then started running up and down the house crashing into things, it was like a switch ,one minute he was happy and the next completely lost it ,after the anger , which he would attack anyone in his way he would become very emotional , we began keeping a diary of this as it was becoming more and more he seemed unable to concentrate on anything for any length of time without an episode, which he was just so frightened and really violent , he would say sorry a lot, it was absolutely heartbreaking , he then started to cut out things that would cause them, he Used to love colouring and water painting he stoped, he loved movies, he stopped watching them .
Oscar was booked on a corse called attention Autism, which is 6 sessions with three therapists to work on sharing attention , they were really pushing him out of his comfort zone as he was so anti textures, anti sharing , anti anything that wasn’t on his own adgenda basically we started to see progress he was very sensory and very mood lead,
They were very intensive sessions some would end badly , he assaulted the lady one day ripped her glasss off , slapped her round the face , pulled her hair and as she bent down to cover her face he attempted to knee her , I thought my god he’s a ninja!
But again I sat back it’s actually a lot harder than you think, but they ask you to not rescue he must learn I’m not ok ,but that is ok ,work through it ,and realise after ,now I’m ok ,work though those situations rather than being removed from them, he has to work on conflict resolution and adapt his ability to be even remotely flexible in thought , the situation was so intense at the time, I had a support worker in with me reassuring me he’s ok throughout I literally had to sit on my hands!
That whole period from about June -August was very hard for me ,I felt so alone I dealt with difficult oppositional violent behaviour everyday and I didn’t know why!!! and it was coming to a head, I just had to ride the storm get this assessment done , as back then we were gathering evidence with the periods of this behaviour, we just didn’t know what it was, I was convinced he had something very serious like a brain tumour , and that worry eats away at you, he had such a bang to his head when he was a baby and was unconscious for 45 minutes, I will cover it in a separate blog as I don’t feel ready to go there fully yet , it wasn’t until the last session when he lost it so badly, over turn taking !,smashed the room up ,attempted to run through a fire door and really hurt himself, he was running and crashing into things that I stepped in ,as I attempted to calm him down he lost consciousness, and it was witnessed and I felt so relieved ,as there’s nothing worse than trying to explain something your child is doing and you can’t, and it sounds so bad on paper you look like a liar , but now they had seen it they said they were going to get a doctor, and were booking him in for an emergency EEG as they believed he had, had a seizure and so 4 weeks later he did have the EEG ,it did fail but he was put on epilim anyway to see if it would stop these episodes ,and work as a mood stabiliser, as he was presenting with some really anxious worrying behaviour and it was growing , he started epilim on 6/8/16 and didn’t have another abscence until 4/5/17 so it really did work , what happens with brain relaxants is you have to wean on and wean off, so it’s not something you can just start then give up so for me it was a really big deal, I was slowly introducing a dependence for something , we started at 1 ml his suggested dose for his weight was 5.5 ml we have to build up each week, but this stuff was so strong that because he doesn’t eat well we would have to bring back down to 3.5 ml ,if he had a day where he didn’t eat , it was a slow process and it bought it’s worries, but it did stop his abscences and his behaviour , it’s a really tough call to medicate without a diagnosis but the improvements were dramatic and I knew then we were back on track , he had been so unhappy for weeks and it was lovely to see him relax again .
We had kept a diary and videos and when we saw his consultant and she advised he should begin epilim ,and I almost very nearly almost refused just because I was so worried, as without diagnosis but she explained there were no long term side effects in boys for epilim ,and it would be a short term fix until we can find out what is going on .
it is now 2018 we are still on epilim they have said it could be a case of Oscar gets so overloaded that he switches his brain off , however we won’t know until he has his EEG which isn’t yet, so for now he has suspected Absence epilepsy and is medicated and it works which is good enough for me , a couple of times now he has started to have them again, and we have had to amend his dosage as he has grown and gained weight but on the hole it has really improved his wellbeing as he is so much more focused and has confidence in his play and in himself .
Its not nice to think I’m giving him mind altering drugs so young ,but it’s also not nice to think about how frightened he is before and after an abscence as it really hits him sideways 💙 we have now noted some warning signs prior to one, also Oscar will remove his socks and shoes and his ears burn off his head , sometimes just the lobes, sometimes the tops, sometimes half an ear but they burn and swell , I don’t think it affects him but it’s a good indicator for us .
I don’t want to wish oscars life away but I do really want the test so we know what we are dealing with but it’s when he is around 7 years old until then I continue giving him a drug he clearly needs, it’s just not clear why!
Theres a lot of cross diagnosis in Autism I feel lots of things are related and overlap , it keeps you on your toes , I have said this before but Oscar has been like peeling an onion, layer after layer , another possible problem another possible diagnosis but i just kind of think it’s all one of the same , I’m kind of glad I’ve been served them gradually , easing me in gently !!!
Below is an interesting article about the links of abscence epilepsy and autism
This is oscars wars when they burn up