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

[winestein]

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.

hugs to you and him!

may be of little use, but can only say that how ever you put it to him, do it in bits so that he can ask questions to make his own understanding of it better (which may be days or even weeks later) - I have only my own experience, was born with a syndrome affecting my mouth & jaw, I do remember always being aware of it but always getting straight answers to what I asked, and ultimately from the age of around 7 that I was in the "driving seat" to make the important decisions. My condition involved many operations too, that was difficult.... my parents were again pretty straight with me that it would hurt but there were plenty of medicines that would stop it from hurting too much.
The nearest I have had to explaining something to my own childen is that ds1 is severely dyslexic, he was soooo relieved when I explained to him what dyslexia was and that we thought that's why he has so much difficulty reading; also my dd wears orthotic boots and at 3yo she only really understands that they will stop her from falling over and stop her legs and feet from hurting - but the other day I showed her a fairly sciency illustration of the bones of the ankle and foot, told her what her boots were doing to correct "the way her feet and ankles were made", and that it would make them stronger. Since then she has been way better over wearing the boots. Have a good understanding of it yourself, and try to give him as much fact as possible but broken down into tiny bits? Wishing you lots of luck for the future.
And for yourself, come and find the strength of mn to support you through the whole thing.

Hi

How awful for you both I am so sorry you are going through this and I'm not sure how much help I can be but I didn't want to let this go unanswered.

I think you should call a specialist children's hospital like St Ormonds and ask about what is available to help families going through. There may be some specialist children's counsellors who might be able to help with your son's fear of hospitals and treatments.

I really hope some other mnetters with some experience or better ideas come along

Does your local hospital have play therapists on the children's ward? This is the sort of thing they might really be able to help with.

sorry to double post - but have also been through the being held down whilst needles were stuck in me etc, very very distressed, probably the age your ds is now. When someone (a young student doctor, iirc!) showed me what was going to happen, explained it to me calmly and asked me to say when I was ready to have it done, the whole experience became unbelievably tolerable. Let him think he's got some control and some choices - even if in reality he hasn't. The smallest things make a huge difference.

I know about scoliosis and have heard of syringomyelia, but am off to find out a little more about the condition you're dealing with just to cure my own ignorance...

Thanks guys.

I like your phrase of "the way your feet and ankles were made" Gigglewitch. I can adapt that to his head. I appreciate what you say about telling the truth, but I am afraid if I tell him now, it will ruin his birthday and christmas. Every time his head hurts now he cries and says he won't go back to hospital - I've not even mentioned it . Sadly, I have a good understanding of it myself. I really do think ignorance is bliss where I am now (although I really do know what you are saying about the honesty thing - I just wish it wasn't happening).

I have spoken to DS's school headmaster about it, BB, and he says he has access to counselling facilities for children and parents if I don't find it from the NHS. He was sooo lovely.

I know the hospital he attends has play specialists Mrs H. I will ring tomorrow and try to contact them.

Thank you all, again. I feel so... alone, and desperate and sad. And I know I shouldn't as I know there are loads worse things, so I also feel pathetic.

No need to apologise Gigglewitch. I really really understand what you are saying about the honesty thing - and I tried it tirelessly with everything they wanted to do to him in hospital (including putting cream on his hands and putting a plaster over it - even this was a nightmare). I WANT to tell him the truth but I'm scared that if I do I won't see him for dust as I think the truth is his fear IYSWIM.

totally see what you mean. As his mum you definitely know best. And don't let anyone tell you otherwise
How much time have you got to play with atm? Not wanting it to spoil christmas and birthday is a perfectly legitimate reason for postponing it a while. It's got to be the hardest position you're in - I really feel for you.
My ds1 was completely traumatised with the cream and plaster thing to numb his hand for blood tests so things can be off to a bad start from there if that's the way your ds was built. They are resilient little creatures though, and have an incredible understanding if they have to 'get' something complicated.

You sound like you need time to deal with your own feelings before having to support ds, please keep posting here and take every offer of a listening ear in rl.

what my ds1 needs to know, is usually "what day is it happening" and "when is it finished". It appears that for his own processing he has to know the start and finish of it, and if we can tell him that in ten mins that blood test / whatever, will be gone, done, over with, finished - then he's ok. nowhere near happy but at the point where he tells me "well I'll just have to cope with it then" - lol.

I have so many questions I need to ask the nerologist, GW. The infuriating thing is, if we had been told at half term - when they knew - I would have been able to ask all the questions I needed to know as I would have had time to formulate them. As it was, we were allowed to believe he was getting better and then metaphorically took a huge blow last Wednesday.

The main questions would be centred around the time factor. From what I have read and what I can see I don't think there is a huge amount of time. Since the "neck injury" (although we now believe there was potentially no injury, just symptoms of this condition) he has taken a proper downhill slide. Part of me thinks I am paranoid, but I see everything with clear vision now and believe I just wasn't seeing it properly before.

Which unfortunately probably only gives me very little time to talk to him. I will make contact with the play therapists to get their advice, although I will still issue anyone dealing with him medically a bulb of garlic as protection.

Sadly, I have tried the whole "in 2 seconds this will be over thing". Every time it still wasn't over in 2 hours.

I do need to talk to someone - I know. I'm just no good at believing that people want to listen. The lovely head teacher said to me "there is a very good reason that on an airplane the adults are told to put on the life jackets first". I know he is right. I'm just rubbish at asking for help for me, but I have to do it.

am like at the time thing, that they've known for what? a month or more, and not told you anything. Can't think if there's a decent childrens hosp over your way, Birmingham's got one obv, and gt ormond st in london, if you were over in my neck of the woods it would be alder hey in Liverpool.
Looks like play specialists and child psychs would be the way to go, as you've already said. Can't blame you whatsoever for wanting to keep them at arms length, the way you've been treated is pretty shoddy.

The head teacher sounds fantastic, I'm sooo pleased you've got someone on your son's side who's supportive.
Wondering if there's a PALS service at your hospital? They can sometimes help.

My consolation is that the neurosurgeon who will look after DS is the loveliest man, who also has a brilliant way with him. And I also understand from a friend of mine who is a nurse there, that the neurosurgeons are some of the best in the country. I wouldn't want to change his consultant. I would like some questions answered about why we weren't told when they could have told us, but I realise that won't halt the onset of the neurological damage.

What is PALS? I have never heard of it...

now that's fantastic news that you've got the best.

www.pals.nhs.uk/PALS explained here way better than i could, obv! I've had plenty to do with them as i teach children/young adults with special needs, and every time we go near a hospital it has to be organised like a military campaign, as you might imagine - many of the students simply don't understand the concept of 'waiting' let alone in a crowded room with others, we basically use pals to be the go-between to make sure it's all as child-friendly as possible. I may well be barking up the wrong tree and it's not necessarily a great deal of use to you, but a little more info at your fingertips anyway.

How long after christmas is the next scan?

Giggle - I so appreciate your time. I don't think you are barking up the wrong tree at all. I will try and contact them as soon as I can as it sounds great. If you hadn't have said I would never have known - and it seems I can cover all bases: my need to help my son, my need to help myself and my need to convey my dismay at not being told sooner.

Thank you

yr welcome
and don't be daft