I enter the room to wake Oscar around 8 am a little later than usual , he's laying funny!!!! I panic turn the light on he like like he's not breathing he is I can see he is ,but he's sweaty and grey and unresponsive, I scream out for Brendan he is in the Garden typical!
I carry oscar down stairs feeling like I'm going to have a heart attack, strip is clothes off he's sweating and I just panic!
When I panic, I'm calm and methodical but also absolutely crapping myself ,
Brendan comes in I fill him in ,he's breathing but I can't wake him, his little eyes are rolling ,we just took him straight to the emergency out of hours treatment room, I grabbed his recently prescribed medication ,As he had been having little outbursts we're he didn't know us, he had been prescribed epilim an epilepsy medication, they were not certain but assured us it would stabilise his mood ,as he had been extremely violent during the outbursts and we couldn't find a trigger, the catalyst to him towards being prescribed it was ,during a therapy session where he blacked out, came too ,attacked the lady and then attempted to run through a firedoor! He then headbutted the floor repeatedly really hurting himself, he then would become very upset saying sorry over and over, this mefication really helped him calm ,less episodes, we still had the running up and down frantic and some head butting but not half as bad as it had been.
We got to the emergency center bren ran in ahead we had visited many times suspected broken arm twice and a fair few headbangs in the climbing days! Bren explained Oscar has Autism we dont know why we can't wake him ,he could have had an overdose due to poor diet!!! On his medication, he has Suspected absence epilepsy but we unsure, he was seen by a doctor who was also unsure but then seen by a paramedic who explained the doseage could be too high ,”if he hadn't eaten enough, even though its correct for his weight, new medications can be trail and error, I remember thinking where not specialists there giving us this very strong brain altering medication to administer with no training , being a parent shouldnt make you instantly assumed to know what the heck your doing surely!!!!!!!
Oscar came round slowly while in the emergency center , and ate a breakfast biscuit and Drank, but I was adamant he wasn't having medication that day until I had spoken to his doctor his consultant, I managed to talk to her at 4 pm!!!! Our emergency happened at 7 am but I counted myself lucky she even called me back,She put a different spin on things and explained Oscar could have been having a big seizure on waking perhaps a cluster so therefore as long as he had eaten ,he must have the medication everyday 12 hours apart, even if he hadn't eaten. Which sometimes he doesn't for days! Bit if he hasn't we are to halve the dose, but never skip it, we did give the medication that night a lower dose but I definitely didn't sleep that night, I just kept thinking why him? Autism is hard enough, epilepsy is too much, I just felt so worried, brain chemistry really is terrifying .
We had no issues after this point, managed to get his dosage right and it really helped him we also bought a really good camera for his room as our other one was sound only, we managed to put what had happened down to The unexplained!!!!!as we had to choice it was early days and he was due an EEG?
Fast forward August 2018
Oscar still taking his medication sleeping little better too, more relaxed less episodes/ absences it was the beginning of August and I had booked Oscar tickets to watch Teletubbies local theatre.
On waking I thought I could hear coughing!!!!!! Brendan was away with Orla my daughter at a performance as she's a dancer,
I jumped out if bed really not happy with the noises ran into Oscars room , and found he was being sick ,but also really not with it ,eyes rolling, I screamed for lorcan my son to get me my phone and I rang 111 after the first three questions, she told me she's sending an ambulance, and to keep Oscar with me ,try and keep him conscious he was throwing up brown grains!!!! Of blood in and out of consciousness, the lady stayed on the phone and I had to instruct Lorcan what to do, he was running up and down the stairs each time in his pants, go down and let the dogs out✔️Go down and bring me my mobile charger ✔️go back down and get Oscars medication and open the front door✔️Finally go and put clothes on✔️he did all of this and the crew arrived Oscar started to come round and at check up stage, he did actually attack the paramedic ,and I thanked the lord ,as my little feisty boy was back, not this lifeless little boy who looked terrified laying before me, the ambulance crew were amazing and they stayed with us two hours, happy to not admit him but have us open access should he have another seizure to go straight there.
It was terrifying and just thank God Lorcan was home! Autism and special needs siblings really have to step up sometimes and I will never forget how mature lorcan was in those moments, he reminded calm and did what was asked of him, no time for fear and he asked no questions, once it was all ok we had a big cuddle and later that night once Oscar was in bed we played snakes and ladders, on that occasion the outcome was that they felt Oscar was having cluster seizures, there not sure how long for ,but he was unable to break the cycle as he was in a resting state it was the same as the year before in my ways, if not worse as he was being sick blood, I was assured that if they strain from heaving this can be common to be sick grains of blood, we were then re referred back to the consultant
Last week Oscar was booked into his old nursery. Just to occupy him for a few hours, he was very quiet at waking up time, not really himself but I couldn't put my finger on It, he really wanted to go to ABC that day and the day before on arrival he has shouted out and pointed, ITS THE FUN 💙 he only attends three hours, it's such a good routIne for him in the holidays up and out by 9am ,I usually pick him up at 1230 and he just plays after he's usually very tired, but he hasn't taken a nap Since he was 18 months old, when I collected him I was told he had taken a nap he appeared a bit vacant, I wasn't sure if he has slept that well as he has been getting up at night to read in his cot, so I.picked him up and we put it down to tiredness, although epilepsy is always on my mind you have to rule out everything and unless it happens right in front of you, you just don't know ,so I collect him put him in the car, no babble, no noises just deadpan face, really not himself can't stay awake at all, I then witness a seizure for around 7 seconds he has a drink and we go home ,I'm hoping it's a one off, we got home he ate but very quiet, he then has a longer one for around 15 seconds I thought if he has another I would make a call as I suspected the nursery one was an absence also that totally three! But he didn't have another one and started to comeback to his usual self, loud and bouncy at lunch time which was great, I still watched him closely for the rest of the day , so this time awake but still bluster seizure in August, but recovered much better .
Both times August 2017 and August 2018 followed huge developmental jumps for Oscar the first one he started using gestures, pointing, clapping, waving it really felt like he had learnt all these things months before but because he's in such a structure routine he stores these new amazing things up ,and once his routine eases they almost bottle neck out , the second one he started talking more and more words and reading more and this third time if I’m honest so far he’s just been playing more , more independent actually going away from me playing which is lovely ,but in all ,he is still a bit more eggy than usual, and the free time isn’t resting well with mr Oscar .
But to end this blog now ,my take on this is ,Oscar is kept so busy in a routine that allows him to feel safe, I honestly thinks he absorbs things a long time before he processes them, to be able to actually do them, then once his routine relaxes a little he has a sudden realise of these things which is far to much information in one go causing him to be overloaded, and causes him to have seizures , all three times August 2017, August 2018 and August 2019 there have been pretty scary things around brain chemistry go on, despite medication and each time he has had a big developmental jump , I’m waiting for this years jump💙💙💙💙and hoping we don't have any more seizures anytime soon 💙