Help needed in explaining medical things to a nearly 5 year old, please.

[winestein]

Apologies but I have copied this from my thread in children's health - I'm really not sure where to put it, but figured that there might be some children on this board who have had operations and am seeking some advice:

My son (4.11) has just been diagnosed with a marked Chiari deformation (type 1) of his brain with associated syringomyelia and possible scoliosis.

Aside from the absolute shock I find myself in, I need to find a way to talk to my son about it and I have no idea how. I feel absolutely helpless.

He was hospitalised for the whole of half term for what was supposed to be a neck injury - not one person told us about the malformation (other than a subtle hint that something else was amiss) until this Wednesday gone - but that's an aside. My problem is that he developed an absolute terror of the hospital, of taking medicines (flatly refused anything other than calpol) and was generally extremely unco-operative. Due to his age (and non-cooperation!) he had to be sedated for a CT scan and have a GA for an MRI. He was out of his mind when the GA came and we had to hold him down whilst in the end they had to use gas as opposed to a needle in then hand.

My immediate problem is that he needs to go for another MRI after Christmas. Is there any way I can help him overcome is fears? How can I tell him?

My other problem is helping him understand why he is in pain and the subsequent horrific operation and helping him with the pain from that. How do I explain why all this is happening to him?

Are there books out there? I'm clueless and desperate and would very much appreciate someone's advice.

You poor thing! How awful for you and your son. Very scary and distressing.

I don't know anything about the condition itself but I think you really need to speak to as many of the health care professionals involved in your son's care and ask for advice about how you can prepare him for his next MRI and what they are going to do to help. This must happen fairly often with children and they won't be taken by surprise this time as they now he's worried about it.

If you don't get any help there, I would speak to your GP and or HV and ask them to assist you. Hospitals should have strategies to deal with these sort of problems in young children and you shouldn't be left to worry about this alone. The whole thing is worrying enough for you.

As for the pain and operation issue, again I would ask for help and guidance on this but if you need to explain anything immediately, keep it simple, tell him that there is lots of help and kind people in hospital and you could look at some books on Amazon for him.

I had a quick look and noticed they had a Little Princess book www.amazon.co.uk/exec/obidos/ASIN/0862649684/thewordpool

and an Usborne book

www.amazon.co.uk/Going-Hospital-Usborne-First-Experiences/dp/0746066589/ref=pd_sim_b_ 1

But they have lots of others.

Anyway, I'm sure others are better placed to give better advice than me but I just wanted to send you some thoughts in case they help.

Take care

Thank you Debs. Your thoughts and advice are very much appreciated

I will have a look at the books. Thank you again.

HAve to go out now so a quick relpy. GA for an MRI is normal, my 4 year old has that, they need to be still so its easier and less frightening that way. HAve sympathy for gas and needle dilema also, I have found, after lots of experience, that the gas is the less frightening way to go for my son. That is subjective though and still very frightening. My son has been in and out of hops regulary although only once overnight all the other have been day ops which makes it easier, but I still talk it thorough again and again with him.
Ask to see a play therapist, they should have one on site, demand to see them soon so that you son can have sessions before his next MRI, we have not used them ourselfves but heard v good things about them.

Will try to come back later when I'be picked up DS2.

Thanks HM. Funnily enough I have just been on the phone to a HV talking about the problem and she was going to try to get in touch with a Play Therapist. Cross fingers.

I am having increasing trouble getting his pain killers down him. He starts to shake and says he is scared and more often than not will refuse to take it. I managed to get him to take it by "magicking" a pack of go-go's per day previously, but it seems like an expensive, and probably counter-productive way in the long term.

Any ideas on this front?

Hmm, I've had a CT and MRI scan when I was 6/7 years old (I'm visually impaired). What helped was they were planned procedures and we got loads of stuff in the post from the hospital (GOSH) that I could read, so I understood.

When I was 14, I had a squint corrected, and had to have drops for 28 days after, 4 times a day. Sadly, I'd been traumatized by a doctor holding my eyes open and forcing drops in so was really scared of them! So my mum said, "I'd never intentionally hurt you, I'm your mum" and found that if she put the drops in the corner of my eye, I could blink them in.

So, try telling him, that you're trying to help him, by giving him the medicine, and try and explain everything as much as possible. Keep it age appropriate, but say for an MRI, that you want to see some pictures of his brain so he needs to go to have them taken? Sorry, I've not got kids but can only go on personal experiences.

Lollipop - that's lovely of you to add your personal experience - you don't have to apologise for not having kids... We all have our reasons for finding this place

I did try the whole "pictures" thing for the last one, but unfortunately he was already traumatised. He is also traumatised by them mixing sedative into his Calpol so it looked the same, but tasted vile. (I know they had no option, but I am left with the consequences).

I feel I have found a bit of a lifeline tonight by discovering that all of his (much beloved, each and every one) hundreds of teddies are poorly and they all need medicine. He seems really happy talking about them and I think I have found the thing I can use (that should have probably been staring me in the face form the start!)

Can you remember anything else your mum did to help??

Wow! What a scary time for you all - I guess it has been quite a journey to get to where you are now.

My daughter also had syringomyelia (plus a few other things) but in the lower area of her spinal cord and hers was detected shortly after birth. She had her surgery done at 5 weeks old, and luckily everything has been fine since then (she's now 6 yrs). Because she was so young, we obviously didn't have the extra problems you have with helping your son cope with the fear etc.

Which hospital is he under and where will he go for the surgery? We are under Great Ormond Street and they have just been fab. She has had to have further procedures like MRIs done fairly regularly and they always send really detailed leaflets with info for children too. If you look at the GOSH website, there is a section with info on lots of different procedures and aspects of medical care that is very suitable for parents and children to look through - I wonder if there is anything there that might be useful for you to use with your son? The teddy route might be the way to go - it's certainly not unusual for teddies to go along to the hospital too and to have lots of things done to them - a lot depends on how child friendly your medical crew are.

Wishing you lots of luck!

Thanks Nuru He's at the QMC in Nottingham, which is supposed to excel at neurosurgery from what I understand. It's interesting what you say about all the leaflets etc as I feel I have almost had to fight for what I have so far (still nothing tangible!) I will have a look at the GOSH website. My partner was there in the 70's.

His upcoming MRI is to check the bottom end of his spine... and yes, we have had a proper journey... if you re familiar with Alton Towers, feels like a ride on Rita, linked to Oblivion.

Can I ask what the condition is your daughter suffers from at the base of the spine? I know it probably sounds odd, but I feel like we have been somehow cheated, psychologically speaking, in not knowing he had a birth defect for this long - and then it suddenly having such a marked impact on all of our lives.

Good to hear you're in good hands surgically at QMC. I think a few others have mentioned play therapists - definitely worth pushing for.

Dd1 had a tethered spinal cord - basically the bottom of the spinal cord is supposed to 'float free' but hers was stuck down. There were lots of fatty deposits that had to be stripped off the spinal cord as well as the syringomelia. The only reason it was detected was because she had a skin tag at the bottom of her back which was seen at birth and the investigations went from there.

You're right, it was horribly traumatic at the time, but looking back we're really thankful it was all detected then and operated on straight away. I have since heard that it in most cases, it lies undetected until around the age of 4 years when the symptoms begin to manifest themselves. I guess, just be thankful that you've had such a great time with your son up until now, and when this is all over and you get the luxury of hindsight, you'll hopefully see it as just a blip (albeit a horrible one) in his little life. I know that doesn't help now, but you will get through it

I'm just amazed that no play specialist came to see your ds before the last hosp intervention. Its usually standard in a childrens ward for the play specialist to see him before any procedure to ask what help you want, imo.

Yes, GA for MRI is usual, thats how we've had MRI, but for our last CT scan I had to hold a very wriggly child still - wasn't very good so they will not repeat that again unless they absolutely have to, but will do any scans while dd is sedated for some other thing.

Winestein, sorry, forgot to add:

Hope it all goes well next time!

Wow Nuru. It must have been terribly stressful for you. I recall my 5 week old being terribly stressful... with no health worries/surgery and the like to deal with. I hope your daughter continues to do well I have started to realise I have been lucky (in a particular way) to not have had problems to face until now.

Thanks MeltedMars. I am stunned too! Particularly as he was on a children's ward which should be more than familiar with the issues he had IMO. I'm just grateful I have been made aware of the Play Specialists now and have opened up the communication channels already for the upcoming MRI.

Thanks for the support

winestein - sounds awful and very challenging. I don't have any experience of this, but have you thought about getting one of those 'people' puppets, who could be the 'doctor' and a toy doctors kit? You could role play with him, with him being the dr to start with, then when he's confortable with that, change it so you/puppet are the dr. We always call medicine 'better juice' with our boy, and have found star charts/or an incentive like a square of chocolate to be good (not for the teeth tho!). I agree a play therapist would be a good idea, and maybe some of the books on going to the hospital - I think Usborne do a good range. The otehr thing you could do is make him a little hospital/or buy one, so that he can do play round that. I think if children are familiar with something, then it makes it less scary IYSWIM.

I would talk in terms of your son having a baddy or a poorly in his head that the doctors are going to fix so that he doesn't have to take his medicine any more (if that's the case ) You could even use a broken car analogy and say the doctors are like mechanics for your body.

My DS has ASD, and has to have things explained simply - this works really well for him.

I hope the operation is successful and your DS is OK.

That's really helpful Derkins - car mechanics and in general the workings of things really interest him so it might be a key.

Honestly, I feel so rubbish that I can't work all this out for myself, but I can't think straight.

winestein I'm sorry I don't have anything really useful to contribute right now except obviously to make everyone aware of his fears.

You have helped me greatly with advice on something else so I wish you loads of luck and a good outcome and wanted to let you know you are both in my thoughts.

I have namechanged right now because we are stuck in hospital with our own nightmare so I really do feel for you

what has helped one of the siblings was role play, we turned a teddy into the sick sibling tucked them on the sofa to watch TV and gave them a bottle might be something in that.

If GOSH website has stuff might be worth looking at other childrens hospital websites as well in UK and elsewhere, there is on in Philadelphia called CHOP but I've only looked at limited stuff on their site

best wishes

Oh you poor, poor things. What an absolutely ghastly thing. I have no advice, but tons of sympathy.

Thanks Jux. He developed full symptoms of swine flu tonight too. Happy happy, joy joy!

Thanks Ohdear.... I think roleplay is fab and have only just realised my son has been doing it for years since I started it as a way to try and help him through this. (I used to be so artistic and imaginative, I swear!) I feel for you, especially as you have needed to namechange - I am sort of doing that in real life as it is so hard to talk about. I know how it feels to internalise things and be outwardly strong but if you need to chat there is always my "contact poster" button. And I do mean that X

I'm OK as long as no one tries to be nice to me
If they do I am guaranteed to cry
hysterically
all over them
for ages

I discovered half the hospital baby toys today under the bed of a very loud 4 year old
quite why his Mother is keeping them there I don't know

Winestein, sorry for not replying sooner

My mum and gran are both nurses, and were just 100% honest with me. But I always found it helped me, even at that age, to know as much as I could about a situation.

Bad form on the mixing sedative bit! Mine were given via a thing in my hand, and that was painless going in as they numbed the skin first.

If I remember, the MRI machine, was linked via microphone. The techs could talk to me, and if I'd needed to, I could've talked back, say if I'd started getting upset.

Might be worth asking, if he will be awake, if you can use that talkback system, so he can hear your voice? I'm sure some machines also have CD/DVD players linked in. The ones I went in didn't, but I've heard some do.

The worst bit for me, was with my MRI, they injected something into my arm halfway through which stung like hell! And the sound of building work they played to let me know they were taking pictures wasn't the nicest of noise but probably better than just hearing the machine!

Oh, I know exactly what you mean.
People being nice chips away at the defences. Once one little tear finds a way out that's it. Last week I was in DS's headmaster's office and he was being absolutely lovely. I was sat there, basically gurning and repeating "happy face" whilst attempting to fix a grin (undoubtedly manic looking) and pointing at it. It stopped me crying, anyway! (He's just having me sectioned instead).

(Pssst... do what I do when a ridiculous amount of toys get squirrelled. Take whatever you want and walk off saying "just using this for a bit" or wait until she isn't there and grab a handful ;-)

Ds got diagnosed with swine-flu yesterday evening. Look at my happy face! Look at it!!

Cross posts lollipop!

Yes, I have started being totally honest with him whenever medicine is concerned. Hopefully he will stop shaking and saying he is scared soon, poor mite. I keep telling him mummy would always tell him if the medicine is nasty and am teaching him to swallow quickly, followed by a sip of water to rinse out.

Unfortunately he was beside himself with the numbing cream and usually the plaster thing that they stick over it. Despite 2 efforts, no one got a needle in his hands. His screams could be heard in the next city. I have no idea why he has this kind of reaction to intervention, but I would say it is certainly marked.

Due to his reaction to the X-ray which was prior to the CT scan (which didn't happen due to his reaction, until he was sedated) we realise the only option for him is the GA for MRI. No WAY would he willingly go in it. We're stuck with it (or rather, he is!)

I'm sitting here giggling at your description of you in the heads office

There is some sort of cold spray the older children around me keep getting offered maybe that would help? I'll see if I can find out the name. I'm guessing it's quicker so less time to get worked up

Mine's a tiny baby (well a chubby) one actually so no cream just pin 'em down and ignore the screams!!

Yeah, yeah... laugh it up baby!

I shall ask about the cold spray. What happened with your little chubster to be stuck in hospital?

Morning Winestein, my 5.5 year old son had to have GA a few months ago and he is terrified of needles (having had so many).

They used numbing cream on the back of his hand, they apply the cream, cover it with a big plaster and leave it on for about 1 hour before. When the needle was inserted, a book was read which acted as a barrier, so he couldnt see. He didnt feel or see a thing.

They also had a very nice lady who come round before and showed him pictures and demonstrated on a teddy. This wasnt that helpful and a bit too abstract for him, he didnt realise she meant this was going to happen to him. Sometimes ignorance is bliss!

He had the cold spray about 4 days ago, it wasnt much use, he screamed the place down.