Can anyone help in dealing with young daughter terrified to go to hospital for her treatment?

[Anastazia]

Hi I am new to the site & seeking help from parents of children with similar problem. My daughter is 4 3/4 years old been suffering with JRA for 3 years. She has had 5 visits to hospital for steroid injections to ankles and knee so far but the main issue is how traumatised she gets when we are there. Now she is a bit older she knows what to expect and it sends her into a frenzy. She screamed the place down and refused magic cream, she refused pre-meds so we had to trick her and put them in some juice but it still wasn't enough to calm her down and in the end they had to force the needle in her using freeze spray so they could give her the general. The whole day was more if a nightmare than usual and we don't know what to do next time she needs to go in as we know she will freak out. I worry its affecting her mentally and hope anyone else has experienced similar with their children and can offer any advice?

[jo100]

I feel for you. I am a paediatric nurse and my son had juvenile arthritis as a toddler. I can only recommend that you phone the ward to discuss this. They should have a team if hospital play specialists who can help. Thinking of you and hope this helps. X Jo

[Anastazia in reply to jo100]

Hi thanks for coming back to me, we tried that last time it didn't work at all unfortunately ! They are now talking about referring her to child psychologist but I think that might be a bit extreme. We know next time she won't even drink the juice with the pre-meds in do other than forcing her to havd magic cream etc we don't know what else to try. The hospital staff are really good and they don't want to force it on her as this obviously makes it worse for next time. Thanks for your thoughts though its good to know we're not alone in this!

[hamble99b]

Oh poor love! I'll have a think and get back to you. my first thoughts are maybe they can give you something o have the night before that will help her to be calmer all day..

sandra.

[Anastazia in reply to hamble99b]

Thanks Sandra any help appreciated! Not thought about giving her something thd night before, good idea we might speak to the ward about that for next time. Thanks again x

[jo100]

Don't be scared to see psychologist. I would advise you to take any help you are offered. Good luck. Take care. X

[Anastazia in reply to jo100]

Thanks Jo yes it might be worth considering psychologist ; will let you know how we get on, fingers crossed she might be in remission for a while she was for 18 months at one point. Thanks x

[Hidden]

I know it's not the same, but do you know anyone with diabetes who has to inject every day? Years ago a friend of mine was going through the same sort of scenario with her son, so I go my husband's cousin to spend some time with him, each time he would inject in front of the child and discussed why he had to do it, explaining it hurt like someone pinched him. My husband's cousin had had to do this from an early age himself and knew how frightening my friends child felt and was very happy to try and help him get over it.

Like I said I know it's not the same but thought I would mention it to you. Hope you find a solution that suits you soon.

[Anastazia in reply to Hidden]

Hi don't think we do, but its s good idea that maybe we can still use in some way. Thanks for the response!

[Hidden]

My daughter used to get pretty distraught when we or her had to go to the doctors, last time she needed to go we made her feel special before she went because she was going and she got a reward afterwards. We used sweets and a cuddle toy.

[Anastazia in reply to Hidden]

Unfortunately we have tried this and all amounts of bribery - didn't work. Thanks do much for your comments though, really appreciate them.

[helixhelix]

I had TB as a small child, about same age as your daughter, and had to have an injection every day (well maybe it wasn't everyday, but that's what my memory says it was!) and a nurse appeared each morning to do it. Not surprisingly I really hate injections now, but what sticks strongly in my mind 50 years later is how angry I was at everyone saying it wouldn't hurt, or was just a little pinprick, or would only last a second etc etc, when I KNEW it was going to hurt! Not sure that this helps at all, but I do have a strong memory of hating people trying to jolly me on. Polly

[watson3]

Hello

I agree you could ask for some medication to take prior to admission.

Also you could ask if you could put the cream on in advance at home, as long as it is covered wgtgta transparent dressing it will be fine.

Older children are always a good diversion too. So an older cousin etc may be of help.

Good luck

Carole

[Anastazia in reply to watson3]

Thanks for the tip we'll definitely ask about giving magic cream at home, thanks so much for your comments!

[earthwitch]

I know that often young children get really confused about what is going on. It can really help to have story books that explain it in a way they can understand and make it just part of ordinary life. You could try contacting various arthritis organisations and seeing if they have any booklets suitable for your age child. If the child starts being able to understand it better, then it makes it easier for them to talk about it too, and the panic can lessen quite a lot. I'm fairly new in the UK, but I have seen that kind of material in other countries and in the UK for other disorders (like the coeliac "me and my tummy" book), so I am sure at least one of the arthritis organisations here would have it,

Apart from that, I think the play therapists would be worth continuing to work with, and if there is a child psychologist who works as part of the rheumatology team then that would be good too (though I'd be more cautious if it was a more general child psychologist who didn't understand the rheumatology treatments she was getting).

[earthwitch]

The other thing I'd wonder about is whether steroid injections are actually the only treatment available to her. Is it worth talking to the doctor (without her there) about ALL the treatment options, rather than just the one that the rheumatologist wants her to have? If she is that traumatised by it, it might be worth at least discussing with the rheumatologist a compromise of not quite as good treatment, but one that would be easier to administer.

[Anastazia in reply to earthwitch]

Hi thanks a lot for all your comments it's all worth trying so I appreciate it, thanks!

[bpeal1]

Hello

Can I suggest you call the NRAS helpline 0800 298 7650. NRAS are focusing JRA a lot at the moment. They might have some ideas to help you and can probably put you in touch with other parents in a similar situation.

It must be so upsetting to see you daughter so stressed. I hope you get some support soon.

Becky

[cherry2]

Hi, oh i do feel for you and your daughter. Have you tried doing the magic cream yourself for her at home? If she is terrified of the actual cream its self, start by having a bit of a game yourself with some harmless cream eg thick moisturiser, putting blobs on yourself / each other and then add in covering with cling film, then doing alot of squashing and squishing- maybe on a plastic dolly too, get really messy and have fun. Do it at random times and dont mention hospital and magic cream, take it slowly. When she gets used to that you could then get a script from your gp for the magic cream and apply it yourself- or she could maybe do it before you go. You may be able to talk to her about different sorts of magic cream- eg sun cream that she has on which works its magic to stop the sun making her red and sore, mummys magic cream to stop her wrinkles, or magic cream used on cuts, babys bottoms .

But do also speak to ward staff and explain your anxieties. Hope thats helpfull, x

[Anastazia in reply to cherry2]

Hi Cherry thanks for the advice, much appreciated

[tiger]

Hi, it must awful for you to see your daughter going through this. Can you speak to the ward team and play therapists about perhaps her meeting other children of a similar age who have got the same condition, especially if they are coping with the situation. Perhaps by playing and talking to these children she will see that others are having the same thing and they can all be 'brave' together. Perhaps in a childs mind if they see a friend having the same thing so can they. Wendy x

[Anastazia in reply to tiger]

Thanks Wendy will certainly try that!

[Tinwoman2]

I used to have my bloods taken when I was little, but I don't remember being scared. I do remember that the nurses used to draw a bunny on my band-aids and that helped & I loved them & showed it off proudly. I also got a sucker or candy afterwards.

Good luck,

Christine

[SarahKate-NRAS]

Hi Anastazia

It sounds as if you've had some very useful suggestions. As Becky mentioned we are currently evaluating how best NRAS can get involved and add to the existing services already provided for children with arthritis. In the meantime there are two organisations that may be able to offer you further advice on this.

The Childrens Chronic Arthritis Association: ccaa.org.uk/

Arthritis Care's Young People department: arthritiscare.org.uk/Living...

Kind regards

Sarah Kate

NRAS

[Anastazia in reply to SarahKate-NRAS]

Hi Sarah, many thanks for the advice and websites, will have a look. Much appreciated.