Tag Archives: Brain scan

My Incredible Boy

30 Nov

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.

Mondays Suck!

22 Nov

It’s Monday and in all honesty.. My worse day of the week.

Most mummy’s love the fact the weekends over and the children have a whole week in school a head of them. Me I’m already longing for Friday… I hate nothing more then having to take my son to school on a Monday morning!

I was sat on the sofa early this morning… Bracing myself for the week ahead. What mood would the little guy be in when I wake him this morning. It was one question I think I already knew the answer too!

My daughter got up, washed and dressed… She gave me a loving kiss and a wave good bye when she was collected at 8.30am this morning. No matter what, she leaves with the same wave and a kiss each morning! Now I was faced with yet again the challenge to drag my little guys butt from his (My) bed! It wasn’t like it was my first attempt! No I had been pleading with little man since 7am with no joy what so ever. It always seems to be worse on a Monday, what with the weekend having had an impact on his routine and his need for more sleep… It’s like trying to presuade kids to eat veg!

Eventually we had movement and Little man is getting ready at a snails pace. I’ve stopped trying to feed him before leaving as it’s just never gonna happen and will ultimately cause more problems then needed.

So…. We are done! A lot of screaming, moaning, slamming doors later we are out the door and heading for the school. We go through the whole please be good conversation, before he goes storming off through the gates! I will usually go in with little man and wait in reception for his TA. His still downstairs in the “den” which to you and me means… Little man is still spending mornings isolated from his class and working in the lower building with his one2one. Now behind them gates awaits an array of dangers hence the reason I would normally wait with him for his TA! But this morning I’m feeling like a sack of poo. I’ve already thrown up for England this morning and due to the mornings episodes with little man…. my head is pounding. With this and the fact I’ve left baby with his dad I head back home where once indoors I lay down on the bed with bubba and listen to… Well, Nothing.. The sound of pure silence. With this we both enter the land of nod.

Just over an hour later we are up. Little man needs collecting from school at midday and it’s already 11.50am. “God to say I’m feeling rough is an understatement” But with a quick wash of my face and a drag on the deadly sin.. A cigarette… I’m off again.

On arrival I’m met by little mans TA and told the head wants a word. “It was two good to be true… We haven’t had a “word” for a least two weeks and to be honest I liked it that way” I’m greeted with an upset little man and a angry head. To be honest I just wanna be sick (No really I think I I’m coming down with a lousy bug) Its then I’m informed that little man is to return to school today as his on full time this week. I admit I thought he was still on part time for two days and full time for three days. I’m then told to collect him for lunch and home time earlier then his peers like before, and not to be late as he misbehaves in the time he is waiting for me (yet I am only just informed) Little man is constantly shouting out “When can I be normal and go to my class in the mornings like everybody else?” He was clearly becoming anxious with the whole situation.. Yet the head took us out to reception, chose one chair out the four or five that were there and told little man when he is waiting for me he will sit on that chair and only that chair.

Well thanks for that Mr Head teacher! I just wanna get out of here and go home and be bloody ill. I wasn’t rude and I didn’t make a fuss I just went home feed the little guy and took him back to school again! For what was the point getting upset.. I’ve come to learn me and little guy are the only ones who suffer.

Being the good girl I am…at 3.15pm (well 3.17pm to be precise) I’m off out again collecting little man from school. As I buzz the intercom I notice through the window that he isn’t there “on his allocated chair” “Before I’m buzzed in I just know there is a problem”

A problem there was, and mum was here to sort it out!

“His refusing to leave and a TA has gone into the head teachers office for help” I’m told. I stand there thinking…
“No you really don’t wanna know what I’m thinking!” Another member of staff asks me if I wanna go and see where it is my child is refusing to come out from. “Sounds interesting, don’t you think?” Walking along the corridoor I’m approched by the Deputy head yet I’m completely ignored by his class teacher (no guessing why that is) I’m more concerned for my child right now! I at least wanna know where he is! Little mans class are being lead by his teacher from the hall.. Once the hall is empty the deptuy head points towards a corner filled with PE equipment and soft play items. buried beneath it is my son.

Holding out my hand I asked him to come out. Without further attempt he climbed out and asked me if he was in trouble. Did he seem distress? No, he was fine if anything a little worried! So why was he in there? He told me, because it’s comfortable in there, And everyone was singing… He tells me he was practising for the Christmas play but had become confused at what part he was playing… He said it was nice in there… And lastly he said “I don’t wanna leave the class till home time like everybody else”

There was no word from anyone else for when we turned around to leave the hall I saw it was just us. With this we collected his homework from class and walked round to collect his sister.

Still….. considering today was a horrid Monday… Some Positives did occur…

…We had word from the Sen caseworker at the LEA that they will ask the “special school” that state they cannot meet little mans needs to reconsider. They are also looking into schools in the neighboring boroughs. The Sen case worker is very helpful and has maintained contact with myself throughout Little mans Statutory assessment, and for this I’m most grateful… I don’t think I could of dealt with adding another person to the “unhelpful list”

I also got comfirmation on an appointment for Little mans brain scan as part of the Autism study. This appointment is booked for Monday the 29th November and a second scan on 13th December. The scan is part of the study in diagnosis autism in children and myself and of course little man feel privileged to be a part of it. Though there is one downfall to this study! Little man cannot take his Melatonin for a week (that means as off tonight) Though melatonin seems to have less effect these days, it’s still not going to make our nights any less stressful. He still may sleep late but aleast he does still sleep when taking the medication. Let’s hope it don’t cause to much of a problem.

I also received some pretty awesome news this week in relation to a pending project of mine… In which I will share another time when things are more final.

So… Although like always this Monday sucked! It was those few pieces of good news that kept it bearable.. Now I prepare myself and the little guy for the rest of the week. Here’s hoping for better days then today!

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