Chronic pain and the psychological impact of long term ill health

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DS1 is 6. He was born with a congenital abnormality of his bowel. He leads a normal life and we manage the imapact of this day to day (diet and lifestyle and spec medical monitoring).

More recently he has been suffering severe pain, and we have not yet found any respite. It comes on suddenly and often goes just as suddenly, although the duration varies considerably.

As he is getting older, he is naturally becoming more curious about everything and is starting to become upset and frustrated with his 'differences', which up until fairly recently he accepted as just being part of being him, regardless of whether they were 'normal' or not

I have been wondering this week (mostly n the early hours) how you explain to children as their emotional intelligence is deepening, about their problems and what it all means? especially when you cant explain it yourself? and neither can the medics?

I can offer ds1 no reassurance of respite from pain, nor any comfort for the future. The prognosis is uncertain.

Sometimes DS1 is just a 6 yo boy. Other times he seems to have far more weight on his shoulders than anyone should have to carry.

I wish I had more to offer, my heart goes out to your DS - and to you, its so hard feeling powerless to take burdens away from LOs. Anyway - what I do know is that my neice, who has mild Spina Bifida (which involves some degree of incontinence, leg pain, etc) was probably helped the most as a child by meeting other children with physical problems - mostly more severe than hers, but that she could relate to.

She was probably a year or two older than your ds, at least 7....and I'm sure SB is easier to find support around, thanks to societies and support groups etc. But if it were at all possible, through the hospital maybe, or maybe there are organizations for families dealing with bowel related issues, or chronic pain....?? Meeting and playing with even one or two similar age kids with similar 'differences' could be helpful.

Other than that, I know with whatever issues my kids are struggling with I just try to be honest in answering their questions, and I ask them how they feel about those answers...IME, if they can express how they feel, thats half the battle. Solutions are not as important, iyswim.

Hope someone else has some experience for you!

I agree with Elibean. My dd, who has chronic joint pains, benefitted enormously from contact not only with other children with her disorder, but with other children with health problems. She spent 5 weeks in a clinic last year and was radiant: for the first time she met other children who knew where she was coming from.

My 8yo boy is just beginning to feel the first pains from the same disorder, so is quite angry at the moment. Maybe I need to do the same thing for him: find him someone who will understand.

It is difficult when you can't reassure them about the future.

thank you for posting. I currently do not have any network of support for ds. I dont know how to go about finding one either tbh. I have not found anyone else with the same probs - but I agree that others with 'ailments' could be beneficial to him. I belong to the 'Extra special parents' website, nso maybe I could try to find some contacts via there.

This does feel a terribly lonely business

I will be watching this thred with interest as my DD has long term health problems and has had a hard time of it really. I tried to find books about children who have to be in hospital but only found ones with children who for instance had thier tonsils out then were better. My DD won't ever "get better" from what she has so it wasn't really what I was after but could books be a good way of starting a discussion? We have a great support group for DDs condition and they have a book aimed at children so it may be worth looking for a website more specific to your DSs issues to see if you can get anything similar.

It is a shame there doesn't seem to be a support group for the problems your Ds has, but yes I agree that meeting or talking with others would probably help both of you, I have found it so helpful in our case.

Thank you for posting usedtb. It sounds like you have similar issues to me and my ds.

There is no website nor support group for us unfort.

You dont like in SE London or Kent by any chance do you?

I don't unfortunately! I am in Oxford though so not a million miles away. DD is only two and a half but beginning to understand things like the need for her medicine. She had a short phase of spitting hers out and I had to be really tough and say no if you don't take it you will be very poorly and have to go to hospital (that is the best case scenario tbh!)and she now panics if a bit spills when she is taking it. I feel awful that she has to even think about it all but the reality is she will have to learn to be responsible from a young age.

I have been lucky enough to be able to talk to young adults with her condition and they have made me feel so much better because the ones I spoke to were so well adjusted and casual about it all. Children do cope, I know exactly how you feel though, I feel resentful on DDs behalf that she has to cope.

sounds like things are tough with your dd. I am sending much love to you both., If you ever want to chat off board, do cat me.

DS1 (the boy of this thread is now 6 and has been through quite a bit of medical stuff in his short life. But so has my DS2 - who is 4. They both were born with congenital abnormalities, but different ones, altho the geneticists seem to think they are not connected - but what I am trying to say is, we may not share the same conditions (indeed neither of my DSs have a 'condition' rather a mix of health issues, but I have hada fair amoutn of hospital and medical 'experience'

x

Thanks that would be great. Yes our situations do sound similar, it must be really hard not having definate answers for the issues your Dss have had. DD was diagnosed aged ten days so I only had a short spell of uncertainty, I think it made it easier to know the situation early on in a way although it has sunk in gradually if I am honest. x

The hardest thing is not having any prognosis. He could 'grow out' of the current problmes - or he could develop another blockage and become critical again.

He just woke up - I hope only just a bad dream - but every time my heart leaps and I wonder whether it is a problem. I dont know who you ever get over that fear