pyshcological problem with eating and pain - really need some advice

[hamlyn]

DS (4 and half) has a stricture in his duodenum caused by scar tissue from major surgery when he was a newborn baby. This causes him pain and discomfort as food passes from his stomach into his bowel. The pain is more acute when he starts eating. It happens at almost every meal time.

Today at school he didnt want to eat his lunch 'becuase it would make his tummy sore'. The staff (who are fully aware of the problems) encouraged him to try a little, but he threw it on the floor. This is v out of character for him. And since then he has been saying some very worrying things about food. Eg 'I dont need food becuase it will make me ill'. 'Cut me a small piece of bread because a whole slice will make my tummy sore'. (this was at 4pm and he must have been v hungry as he hadnt eaten anyting since 10am.)

I just dont know what to do about this. He is under a children's hospital and I am not worried about how his medical condition is being managed. However the new psychological side to all this worries be very much.

Someone please offer some advice. I dont know where to turn. TIA

is it possible he has now worked out food = pain , and therefore does not want to eat ?

is it possible he is in more pain?

bless him..wish had more practical advice, i;m sure someone else will. ((hugs))

your poor poppet, I have no advice, unfortunately, but a question. is he going to have more ops to do something about the pain? is he facing a lifetime of painful eating? can you give him shakes and the like, is that easier for him to digest?

Oh hamlyn, you poor thing, this is really worrying you isn't it?

You know my suggestion was to see if a drink of milk before his meal with help. Have you given this a go?

Other than that, this is so hard, I am out of my depth. The only thing I can think is that you must get professional help from the hospital when you next go. Get them to address these pyschological issues for you - they are the professionals!

Ds1 is a clever little boy. You need to explain to him calmly that food will not make him ill and that food is necessary for everyone's good health. Have you thought about getting a simple book about how the body works and reading it with him? Maybe that would help him to understand what eating is all about, and it might also help him to understand what is happening inside his own body. Is that worth thinking about?

Some good tips, thanks everyone. I just feel so sad about this atm.

Just been emailing you DG.

i think a book is a very good idea, tbh. this must be so upsetting for both of you, i do hope that the hospital can help...

Quick update. Got DS involved in making tea. Did a v simple pasta dish with salmon, veg and a cheesy sauce. He helped me cook and then he dished up his own small portion. As he took the first mouthful he said that his tummy was full. So I just said 'okay', and carried on eating mine (forcing it down because I really am not ready for my tea at 5pm and am so worried at the moment i have lost my appetite, but I knew I had to do it, for him). But then slowly and gradually he ate his food. Every little bit in his bowl. There was a lot less than he would normally eat but he ate it, nonetheless.

Afterwards he did have a sore tummy, and it is so hard to know what to say to him about why he gets it, becuase there is nothing I can to help, but I feel as though this has been a big hurdle eating this meal. He then had a small yoghurt aftewards!

Thank you everyone's advice. I will certaily try to get a book with pictures, and will call someone at the hospital tomorrow for more advice.

For now I am pleased he has eaten, but I know tomorrow the problems will still be there so we shall see what happens then.

Any more advice gratefully received. Or anyone else who has dealt with health issues relating to food etc, most appreciated. This is a long term health problem and I just need to find a way to cope with it. Thank you.

You have had a success this evening (or late afternoon!) hamlyn, for which you should give yourself a pat on the back. Don't worry too much about what happens tomorrow. If you approach the evening (or late afternoon!) meal in the same way, maybe you will get the same success.

I am wondering though what school are going to do about the problem tomorrow? Was any plan made?

No, no plan was made DG. No one really knows what to do about it, and I was too upset to be able to speak clearly

He's just gone to bed and after he said his prayers he said 'I think I might be too tired for school tomorrow'. He never says things like that. He loves school. He'd go at the weekends if he could. That has really upset me again. This problem is obviously not going to be solved over night

poor DS,,and poor you...can you go into school and talk to the teachers etc..to ensure he is handled with more sensitivity at the moment ?

Dont get me wrong lulu he school were very good and I was plesaed with how they handled it today. But I just dont know what to suggest to them really. I am also worried about tomorrow because I have a hospital appt in the morning myself so someone else is taking him in to school for me....

wow that is one very bright little boy!!!!

nothing much to add other than to reiterate that it kind've makes sense not to eat if in pain so sooner the pain is resolved the better
xx

Is the any advice that the peads can give u? MIL fostered a chinld with gastroscopy )sp?) tube and they were happy to advise and had an eating grop that she attended regularly with him. I know its a slightly different situation but only help i can give (and it bumped the thread!!)

poor you really hope hospital can help
i did read somewhere that kids often complain of tummy ache when they have colds/coughs/minor infections because the glands in their tummies swell - i know your son has more complicated problems but could he perhaps just be a little unwell which is making the everyday problem a bit worse? if this is the case he may be better in a few days?? fingers crossed for you all

thanks for all your ideas. I really appreciate it.

the discomfort DS feels is v real. He had some tests v recently which meant I could see the problems much easier, IYKWIM. The only way to get rid of the problem for good would be to remove the stricture. And I really am not ready for yet more surgery. although it is inevitable at some stage. But we'll cross that bridge when we come to it.

Good idea re the eating group - DS had one of those feeding tubes for a while as baby so I know what you mean there lizbet.

Thanks everyone. It is v nic having people to talk to about this. I am feeling very alone about it all tonight.