My Boy is Incredible!

November 14, 2012January 16, 2021 Claire Parkinson

So he did it!!!

Yesterday was the big day, Little man was all set to take part in a new study for children with autism spectrum disorders & ADHD at Kings college London’s Neuroimaging Centre, Institute of Psychiatry at the Maudsley.

The aim of this study is to investigate the effect of a single acute dose of a serotonin agonist, Fluoxetine, on brain function and functional connectivity during disorder-relevant tasks in children with Attention Deficit Hyperactive Disorder (ADHD) and with high functioning Autism Spectrum Disorder (ASD) This is done by using Functional magnetic resonance imaging (fMRI brain scan) 20 children with ADHD and 20 with high functioning autism will take part in the study All children will need to be aged between 10-17 years and only boys will be participating. Well my little man was one of them 20 boys with high functioning autism. The study will also investigate the brain differences between ADHD and ASD children in brain structure.

We were pretty well prepared for the day ahead when we stepped into our waiting taxi at 8.15am yesterday morning. (I say well prepared this doesn’t include the fact I left my purse and a number of other things indoors) Once we had arrived and met up with the lovely Kaylita Chantiluke, who would be carrying out the research as part of her PhD with the supervision of Dr Anna Smith, Professor Katya Rubia and Prof Murphy. We were shown to a comfortable room where Little man took the pill (either a placebo or fluoxetine) and then practised a number of cognitive games that he would later do in the scanner. It was pretty hard to engage the little dude from the onset, but Kaylita was fantastic with him and got him playing the games. Within just ten minutes of meeting the little man Kaylita asked me if I was sure he didn’t have ADHD on top of his AS. Well, he was bouncing of the walls. I think she was even more shocked on discovering he had only had two hours sleep the night before.

We had a good five hours wait before Little man could be scanned. As well as the cognitive games he practised which were…. a Stop Task, Reversal Task, Temporal Discounting Task and a Working Memory task (N-Back) we also had a ton of paperwork to get through. These were all questioners mainly based on Little mans behaviours in home and at school. I remember filling out a couple of similar ones before Little man had his Aspergers diagnosis when we first went to Camhs. It was crazy to see how different my answers were. I remember when I filled in the first one in 2007, thinking, “Oh his Ok! He doesn’t do that or I haven’t noticed that” How very different it was now… As every single box that highlighted the extent of his problems was ticked.

Just before lunch time we were taken to see the mock (dummy) scanner and Little man was able to lay on it and try it out. He wasn’t able to hear the noises it made due to it being a mock scanner, but he seemed quite confident with the whole thing. After this my life saver of a friend (I love you Donna) came and met up with us and lent me some money for lunch and stuff (Remember I left my purse back at home) With this we all visited the local McDonald’s ‘Very classy”… By the time we got back and stuffed ourselves and warmed our cold hands It was time for the real thing!!

I noticed on the way down to the scanner little man was anxious! How do I know this? Well it was the whole nasty attitude he had suddenly acquired. He always does this when he is worried, frighten or about to enter a new environment. Once there we had a little confusion over if I was able to sit In the scanning room while little man was scanned. This was because of a past operation I had in the past. However we soon got the Ok and off we set.

My God the force of the Magnet inside that room had my hair standing on end. I could tell by Little mans face he was getting worried and to be honest I was too. He was so brave laying down, having all the equipment placed on him. The machine attached to his finger really freaked him out… I sat thinking “Well, how will he cope in the scanner if he can’t cope with the thing on his finger?” Placing the cage type think that has the mirror attached over his face was a bit of a worry. I knew he would be Ok with the closed space but I started to worry about all the other things like the noise and the fact he had so much equipment on as this was already causing him stress. He needed much reassurance and also needed to know how long each scan was. He wore ear plugs and massive earphones and I wore the same. It was hard as I could hear him a few times shouting for me once in the scanner and shouting back he couldn’t hear me. He needed to come out a few times and again needed reassurance. We all told him we could stop but he kept insisting we try again. The noise was so loud that I ended up with a huge headache, that and the magnetic force was the likely cause. I kept thinking If I feel this way he must be going crazy!

Though we were in the scanning room an hour, much of the time little man was outside of the scanner were he required reassurance. We did manage to get a through good images but expecting little man to tolerate the scan for more than a few minutes at a time was too much and though he didn’t want to give up (My little fighter) everyone decided not to put him through anymore (myself included)

We have another one in a month were again he will take the tablet (Either placebo or one acute clinical dose of Fluoxetine, depending on what he had yesterday) and then will try again at the second scan. Little man was unable to do any of the cognitive test while in the scanner but his participation in the study will still help a lot. I have explained to little man he does not have to go through with the second scan… but like the trooper he is his said he wants to.

It was a long day and we didn’t get back into our taxi till gone 5pm. After telling little dude how hugely proud of him I was… I feel fast asleep in the cab. Once home and feed we went to bed for an early night. Sadly Little mans little sister was unwell and up half the night and after a cat nap so was little man!

So here’s my message to my wonderful little man, ” Yesterday you did a really brave thing that will hopefully help lots of children like you! I think you are one incredible boy who I’m proud to call my son” Love mummy.xxx

To read more about this study visit Kings College Institute of Psychiatry webpage.