The Boy and the Hospital Visit

526px-MRI-Philips

Not many people enjoy a trip to the hospital but for those on the autistic spectrum – especially children – it can be traumatic.

Hospitals are a sensory minefield for autistic children due to loud noises, smells and harsh lighting. It’s an onslaught on the senses alongside the anxiety of the reason they’re there in the first place so visits can be challenging for children and their parents. On top of that the tea and coffee is often of the vending variety – therefore crap.

We came to be in hospital because The Boy has been having nose bleeds and headaches with the headaches steadily getting worse so his GP referred him to a pediatrician who he saw this week.

First off he was weighed and measured and I can officially state that he is 4 foot 2 inches tall. He’s only six years old and he’s almost as tall as me! *gasp* He’s always been bigger than the average bear height-wise and this has always confused people into thinking he’s older than he is. Of course, Hedwig the owl also had to be weighed and measured and she’s 26 cm’s tall and 0.3 kg – in-case you were wondering.

Then it was in to see the pediatrician. The Boy entertained himself by turning the taps on and off while she wrote down his history. Then she examined him as best as you can examine a child with ASD but he allowed her to listen to his heart on condition that she listened to Hedwig’s too, which she did.

She informed us that headaches in children are common and she thinks his are migraines. Apparently a child is more likely to have migraines if a parent has them and in our case, that’s me.

Due to his age (and the fact that the headaches have been increasing) she wants him to have an MRI scan which can be a bit lengthy but is completely safe. However, knowing how The Boy struggles to keep still at the best of times – I can see this being a huge challenge for him.

I had an MRI scan when he was born. They whipped him out of my tummy and whizzed me off to the MRI room and that’s all I remember because I was completely trollied on morphine so I slept through the entire thing but I’m hoping that it will be of some comfort to my son to know that I’ve had one. Obviously, I won’t tell him about the ‘being trollied’ bit.

After the pediatrician had done her stuff a play worker took us into a side room (aka baby change) to explain to The Boy in child friendly terms what would happen but anxiety was threatening to overwhelm him. He was making more owl noises than human ones (a sure sign of distress) but she understood that it was unwise to go any further at this stage. We came away knowing that we will be contacted in a few weeks with an appointment for the scan but we can make arrangements to see the scanner beforehand if we wish to.

The Boy isn’t going to be sedated because the pediatrician has found that sedation often has the reverse effect on ASD children and apparently they go a bit ‘loopy’. I’m not finding a lot of evidence for this to be honest and I feel that it will be too big a challenge for him to keep still so we are going to get another opinion on whether or not he should be sedated.

In the meantime, there are lots of things we can do to prepare him for the scan in order to keep his anxiety to a minimum.

Books

Reading books about hospital visits will give him knowledge of what to expect as much of the anxiety is fear of the unknown so I am trying to find stories which feature an MRI scan.

Videos

Youtube has videos specifically for children and MRI scans, with or without sedation. We intend to show these to him over the coming weeks and then he will know exactly what to expect.

Playing

I thought it would be an idea to do some practice runs maybe using a big cardboard box that I can make into a scanning machine and we can practice him lying still, Hedwig too!

Social Stories

Using social stories is a great way of introducing new social situations to the child. We are hoping his teachers will work with us as well so that they can address any anxiety he has about the scan when he’s at school.

Keeping it positive

It’s important to talk about hospitals and staff in a positive manner. Me? I hate hospitals. They smell all disenfectanty and stuff and they conjure up memories I wish I didn’t have but I know that I can’t afford for The Boy to see my discomfort, so I do what I’ve done all my life and pretend I’m OK.

The Bribe

We know this will be a massive deal for our son so we’re going to promise him a trip to the Lego store after the scan has been done. Yes, it’s a bribe but it’s also a strategy because he needs incentives to do even the basic stuff and this goes way beyond anything he can comprehend. Nothing he has experienced in his six years comes close to this, not even what he went through during the autism assessment. It’s a big deal and if he manages to go through with it all, I will be so proud of him.

Hedwig

Where The Boy goes, so does his feathered friend and both got a sticker for being brave at the hospital.

Well done The Boy and well done Hedwig.

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Have you have been through this with your child? If so, any advice would be appreciated.

 

Sons, Sand & Sauvignon

Image Credit

“MRI-Philips” by Jan Ainali – Own work. Licensed under CC BY 3.0 via Commons

25 thoughts on “The Boy and the Hospital Visit

  1. My godson has an mri every 6 months because when he was 7 he had a brain haemorrhage and they found a tumour. He is now nearly 18 and they still unsettle him. He always thibjs its going to come back. It did once, but they got rid of it again. He has always been given a general anaesthetic, but he isn’t ASD. Sorry, probably no help!

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    • Blimey, I’m so sorry to hear that, Lovely. That must be incredibly tough on him and the family. I think we will probably get a second opinion on the sedative as we just can’t see how they will get him into the blimmin thing without it.

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  2. Tracy, what a worry for you all. I’ve had 4 MRI’s and they are not nice even for an adult. I literally shook for ages after the 1st one but now I know what to expect. It’s such a worry, not only having the procedure but then waiting for the *all clear*. I’m such a bad friend as I didn’t know thus was even happening to little (well very tall) man. The only positive thing is that he’s in a happy place wearing his ear defenders but apart from that it seems such a huge hurdle it’s a nightmare. Obviously the paediatrician must know what she is talking about BUT I would have thought the best option would have been for it to happen when he is away with the fairies having a lovely dream about Hedwig and her friends. Hopefully 1 of your followers will of had first hand knowledge of a very young child having an MRI and that they can offer you helpful advice. All I can offer is being a friend on the end of a text……that’s really not very helpful, sorry!
    What a stressful time in your life, remember…….I love you xxxxx

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    • Aww thank you dear lady. That’s the thing see – I’ve had an MRI but can’t remember it because I was out off me face on drugs lol. And you are not a bad friend at all!! It’s more about me being forgetful and menopausal lol
      This morning I called John Nettles, Jim Nettles for goodness sake lol. I know you are there if I need you and vice-versa. Big lufs Xxxx

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  3. What a worry for you. Your paediatrician sounds great, that always helps. Sounds like you’re well organised for preparing your son, but I guess the uncertainty of how he’ll be on the day must be a real concern for you. I’m not sure about the sedation, would have thought it would help but your consultant must have her reasons. I think I’ve heard of something about autistic children becoming agitated as they recover from sedation… But please don’t take my word for it
    Take a flask of your own coffee with you xx

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  4. If you can do a whole practice run that’s at easy pace, seeing the machine and getting a reward I guess. Social story is a great idea also a visual timetable with removable items for the day might work especially if it’s got the treat at the end. Your boy sounds more like our eldest who would work well with these ideas. Our youngest with ASD too didn’t have a clue what was going on. Sedation was a nightmare for us so I’m glad you don’t have to do it. If that changes we’ve been through it too… Read this afterwards xxx. Good luck, sounds like you’ve got good plans. http://rainbowsaretoobeautiful.blogspot.com/2016/01/i-dont-know-how-you-do-it.html

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  5. What a thing to go through. This is one of my biggest worries with our son as he hates hospitals and they cause so much distress. I think you have a great plan and I really hope it works for you. I have no idea how we would keep our little guy still. I really wish you lots of luck #spectrumsunday

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  6. Sounds to me like you and the Doctor are doing all that you can to keep the boy informed and in a manner that he can understand. A sedative sounds like it should do the trick, although when they gave my son a Valium for a dentist appointment it made him high as a kite! Hope it all goes well for you both xx

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  7. LOL at the ‘being trollied’, sorry!! Great ideas re preparation though; I know YouTube would help massively if my girl had to do this. Am still not confident she could either, but fingers crossed she doesn’t develop headaches any time soon (she doesn’t ever take any medicine, which is a worry in itself!) xx

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  8. Oh my goodness! I don’t envy you at all. I had an MRI last year – only on my hip so my head was partially out and I hated it! My daughter was due to have one and I didn’t even dare tell her. I would have been happy for her to be sedated to take away some of the fear, but luckily it was cancelled at the last minute as she got better. The videos and everything sound like a really good idea – I guess it’s about as much familiarisation as you can manage!

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  9. Hi lovely. You are doing all the right things in preparing your little man. N had to have a general anaesthetic couple of weeks ago for tooth out, two fillings and various other scrapings (!) and I took her for a tour of the ward few days before and got her to sit in the waiting area as apps rarely run on time do they? But on that note I stressed to staff that she would need to go straight through when we arrived. No waiting while her anxiety levels raised to ‘bolting for the door levels’ and in the event she coped amazingly. Staff were great (apart from the elderly nurse who said “was she born brain damaged”?) *gritted teeth and smiled* In the event N was amazing and I know this is about S not N but I hope that you get just as lovely a result. I’ve never felt more proud. Here’s to bribes/rewards and a successful visit for you! Xx

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    • Thanks Lovely, That was so out of order for the nurse to say that, elderly or not. You did well to grit your teeth and smile. I think I’d have gone off on one. Good to hear N coped. Hopefully The Boy will amaze us too. Xxx

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  10. What a tough situation to be in but your plans to help him cope with the MRI sound great. Wish I could offer some advice but I’ve not been through an MRI at all (closest I’ve been is seeing them on ‘House’ which I don’t really think counts!) I’ve heard they’re very loud though but I’m sure you’re preparing yourself for all eventualities. Good luck and I’m thinking of you. xx

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  11. We’ve had sedation when Jude has had teeth removed and it’s always done the trick. It’s never a nice experience, but once the sedation takes hold it has lasted as long as needed. The wake up can be a bit confusing, but last time they used an anti-anxiety medicine too which really calmed him down and stayed happy even after waking up with a mouth full of blood!
    Good luck, I’m sure with all the preparation you’re doing it will go well 🙂

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