Is medicating masking ?
Oscar takes a couple of medications both prescribed by his consultant one is Aliamemazine tartrate and the other is sodium valproate ( epilim) he wasn’t given both at the same time ,this has been a slow process, aliamemazine was prescribed as he had trouble sleeping , he would stay awake all night singing just unable to switch off, this happened from around when he turned one he would then during the day be very unmanageable and very unhappy , this drug is an antistermine and has a calming effect , and no long term side effects , it also improved his mood , he quickly developed a good sleep routine too, but I was always mindful to medicate just because he was so small, but with no long term affects in mind and everybody was getting sleep so we gave it a go , within two weeks he had made vast improvements, we went from having a child who was very unhappy all the time, unsettled , head banging , constantly wanted me but would then fight me as he didn’t want me near him , he was in a very anxious state but now three years on we rely on this as he needs to sleep to function , I was anti melatonin which is what your body produces to allow you to be tired and sleep, children with autism do not produce this so ,some are given melatonin to help them sleep , personally I wasn’t desperate enough to give Oscar this , I have read stories about long term side effects and depression in long term use , Plus I always worry about him being sick in the night so it wasn’t for us , but everyone’s different it’s personal preference .
About a year after this time Oscar started to get used to this medication and it started having a less effect , it made us question why we were giving it to him , we had a short break! Let’s just say it reminded us why he takes it , we had reverted back to nightwaking or falling asleep at 430 am and very unpredictable behaviour during the day , violence and self harm it was very distressing for him , myself and his siblings so we recalculated the dose with his consultant and continued , around this time Oscar was having more and more absence episodes we began keeping a diary of these and videos, he would literally switch off mid play for a few seconds , but then be very upset afterwards and confused but mostly violent and head banging with lots of running , he doesn’t know who we are it’s terrifing to watch, and heartbreaking to think how frightened he is in those moments , he had an EEG awake but it failed the lady completing it felt he was too distressed , my husband was struggling to hold onto him and was covered in scratches it was terrible , with no results the consultant felt she was from watching the videos ,and reading the diary and reports from the other professionals that had witnessed them also that, Oscar could have absence epilepsy where his brain switches to another Chanel and his facial recognition will go ,so he’s not sure where he is , she suggested Oscar take sodium valproate to stabilise his mood and hopefully stop the seizures , they did stop for a year and he was happy , it was very hard to get his dose right in the beginning as he’s a poor eater and we did have one overdose incident !! However we do still take this and we check his weight regularly to make sure the dose is correct .
we have been told recently that Oscar can have another EEG asleep to hopefully find out if he has this , as his mum it’s not an easy thing to medicate especially without diagnosis , but then again it does work and has no side effects from long term use for boys , it can cause fertility problems in girls .
we have also been told recently that they won’t really be able to fully diagnose absence epilepsy until Oscar is 7 but there is a chance he could have ADD ( attention deficit disorder) which can have absences and similar behaviour this would be a sensory processing issue , so now I’m just feeling like we must continue with the medications as they work for him as we can’t know yet , I really feel for other parents making these similar decsisions for their children also it’s very hard.
The fears are for me , what if it isn’t medical what if it’s behavioural and in fact we are masking it not dealing with it , many of his peers are really coming on with processing he is too but I do let a lot go due to absences as I know he doesn’t feel ok .
i most defiantly do not want a 15 year old hitting out and heatbutting as autism is lifelong ! It’s a very hard one I think the next two years will tell .
As Oscar is a terrible eater he chooses a sensory diet of crispy crunchy foods none cooked , until recently ( chips) I worry about his vitamins so I supplement he takes well kid syrup, omega three fish oils , Echinacea, biocult probiotic, calcium liquid, for me puts my mind at rest he’s not lacking in anything it’s not a replacement for food but it’s better than nothing .
Oscar has all his suplimemts in his juice spread out at certain times , he’s so used to there being something in his drink if there is not he gives it back !
i keep all my medicines and supplements well out of oscars reach in a lockable cabinet , having a child that takes controlled medication can make travelling hard work I always carry a doctors letter with me ,to prove they are oscars and take double the amount I need ,in separate cases they are unopened bottles and not in hand luggage this ensures we get to our holiday and have what we need .
lots of parents that have children had added health worries on top of autism, as lots of diagnosis overlap it comes with the territory , ours are unknown for now and you can’t live worrying all the time you have to suppress it and carry on as we are 💙 everyday wake up and keep going as I’ve learned first hand there’s always another parent with a bigger mountain to climb 💙