Day 24. The journey continues …

Day 24.  The journey continues …

We have now reduced James’ medication to a point where our next step is to be off all medication.  That step will occur from tomorrow.  It’s been a really interesting process to watch.  When James is good he’s fantastic!  When he isn’t he is appalling and often very anxious and teary …. but I must say it’s been nice to see my funloving, giggling, flappy little man re-emerge from the haze he was in.

When he was on this particular medication his flapping almost completely disappeared.  Now as you’d know I adore his flapping.  He flaps the  back of his hair when he’s really happy and/or excited.  I call it ‘unbridled joy’! It’s just beautiful.  I don’t want him to stop flapping – he’s my happy, flappy boy.  He played a trick on me this afternoon and then nearly laughed and flapped his way out into the ether!  I nearly cried, I was so happy to see it!

James really lost his sense of fun on this medication.  He has always been a giggling Gertie.  He’s got a great sense of humour and loves a good joke.  He’s really lost that since he started this last medication.  As he’s been coming off it we’ve seen that little funny person re-emerge.  I have had the joy of listening to him bust himself laughing.  He was in such hysterics laughing at Tom’s antics yesterday morning  that he could barely stand.  Despite the fact that we were late for school, I just enjoyed listening to them both chortling together at their own funniness.

From a young age, James found it quite difficult to wind himself down to sleep.  Many children with ASD struggle with sleep.  Some research indicates that children with Autism tend to have issues with their circadian rhythms.  Issues with melatonin regulation (hormone that regulates the sleep/wake cycle) and anxiety also impact on the child’s ability to sleep well.  Children with Autism are also more likely to suffer from other conditions that may impact upon sleep such as gastro-oesaphagal reflux, sleep apnoea,  night terrors,  and seizure disorders such as epilepsy.  James has taken melatonin to help to sleep since he was about 3.  Since starting this new medication, he has taken melatonin less often.  For him though, I think the melatonin is more effective in helping him off to sleep than his current medication.  The current medication may improve his overall quality of sleep though which is what we may have to experiment with in a week or so.

Over the past few months James’ eye contact has really deteriorated.  His ability to demonstrate affection has also decreased.  He has gained nearly 5 kilograms of weight.  His levels of agitation and anxiety have increased.  The new medication has helped with hyperactivity a lot and it has definitely improved his sleep quality at night but other than that, I can’t see a lot of positives for using this medication.  I thought long and hard about what we should do because we have been on a 5 year merrygoround with medication.  I think it really is time to just wean James off all medication and see what happens.  It’s been a while since we’ve really seen his baseline behaviour and I think it’s important that we see this before starting yet another medication.

I have been picking him up early from school whilst I’m on leave – 12:30pm each day.  This morning started badly with crying and anxiety due to not wanting to go to school.  He was saying, “It’s not peaceful there.  I just want some peace.  It’s noisy and I just get so tired!”  When I dropped him to school I deliberately arrived after the bell (I often do!) so things would be quiet.  By the time he got to the classroom he just flipped a switch and happily went in and chatted with his friends.  So I guess it was no suprise after our moring that today I got a phone call from the school at 11am to say that James was distressed because he didn’t want to go into the hall for the Anzac Day Liturgy at school.  That bloody hall … seriously! That hall is the most reliable measure of James’ anxiety.  If he’ll go inside it – he’s good – if he can’t go in – he’s not OK!  He was reasonably happy when I picked him up at 11am.  This afternoon he’s really exhausted but again, quite settled and happy.  I’m pleased we have the Anzac Day holiday tomorrow and we may even just consider keeping him home on Friday as his last medication drop is tomorrow.  Eek! Medication free for the first time in years!!!

So what are we going to with this little man?  For now,  I’m feeling like perhaps we might even entertain leaving him off medication in the short term.  He is certainly having some issues with attention and anxiety … but I also think he’s old enough now for us to try applying  some interventions to help.  Certainly if it gets unmanageable, we will need to medicate but I’d at least like to give him an opportunity to try and regulate himself.  We shall see. 

Dad has been helping me research into neurobiofeedback.  This technique involves the use of real time EEG in order to illustrate brain activity.  My understanding is that essentially a simple light, or game, or tone is used to indicate when certain brain activity is detected and over time this can help the client to gain control their central nervous system activity and responses.  It aims to change timing and activation patterns in the brain. It creates changes in feedback loops and pathways that make up the brain. This improves brain regulation, which impacts a variety of symptoms. This treatment has been used extensively for ADHD but more recently it’s being used in treating individuals with Autism.  I will certainly investigate this further.  Anyone had good results using this process?

Well … for now, I’m delighting in having back my affectionate, funny, happy flappy little character.  I just adore him and I adore the way he is – his personality, his eccentricities.  I don’t think I’ll ever be comfortable with a medication that changes the essence of who he is because who he is …. in essence … is awesome!!!

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