Feeling disparate mum of 10 year old with Crohns...

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Hi - I don't know if anyone can help. My son has been 99% told his illness is Chrons but have to wait another 6 weeks for the endoscopy tests. I don't know how to carry on watching him in pain, night sweats, so tired cant go to school, on toilet so much. He is so young, can't believe they would leave him this long, I know everyone is urgent but just feel so helpess, surely the longer they leave him without treatment the more damage? I am in shock and totally confused by it all?

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  • Posted

    I find if I follow a gluten and dairy free diet and avoid fizzy drinks especially coke and also chocolate my symptoms are far less extreme. You could try this until he is next seen by a doctor, it may not work but it's worth a go. Very sorry to hear that someone so young if suffering, with diet and medication thing will be easier, keep your chin up.
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  • Posted

    Thank you for replying, I have bought all the gluten free foods but it is so hard getting a 10 year old to stick to it, his appetite is not very good and already so underweight. All the on line information seems to be saying such early onset ibd has a poor prognosis, so very frightened of what lies ahead for him. So many of you out there seem to be suffering.
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  • Posted

    Hi

    Its very hard watching you child in pain

    My child has just been diagonsed with

    Oral chrons , orofacial granulonatosis

    At the age of 7 years old. when he gets

    the right medication he will be on the up.

    Dont read things you get on the net it will

    Put your head away. Good luck.

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  • Posted

    Thanks for replying - sorry to hear of another young person needing medical help. Yes the whole thing just really messing with my head with just such a lack of help and info from the doctors so far. I think we will be making a nuisance of ourselves at A & E until they at least start some sort of treatment.
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  • Posted

    I agree, don't try and read up on it on the internet, there are a lot of scaremongers out there. Try keeping a food diary for triggers, I also find very small but frequent meals help. Keeping positive is half the battle. I can't speak from your point of view though, as parents it must be very hard to see your children unwell. Best wishes to you all.
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  • Posted

    I will do my best to keep positive. We have been such a lucky family so far with good health and have always taken care of ourselves with healthy food and exercise but some illnesses just don't care. I will keep a food diary too. Thank you everyone, I have never used a forum like this before but it helps not feeling quite so alone.
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  • Posted

    I have not heard of some of these things. It sounds like everyone is so different and it is going to be a big learning curve with a rocky road ahead. At least when you are an adult you can make diet changes for yourself but to make such changes to a child who just wants to be like his friends is going to be difficult. Thank you for info.
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  • Posted

    My brother and his family are on the gaps diet. My nieces have weird

    allergies to food. One of his girls, every gets fruit as a dessert and loves it. And if you

    offer her candy she says no because it makes her rash she says.

    If your son understands the reality of his affliction. I'm sure his new diet will become

    less of an issue for him.

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  • Posted

    I am hopeful the dieticians will also help with issues once the diagnosis and extent of disease is confirmed and hopefully my son will manage better, he is a lovely, bright and happy character and I think this will carry him through whatever lies ahead. Thank you all for taking the time to reply.

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  • Posted

    I agree with a lot of what has been said here, diet and attitude are very important. Have had uc for 30 years and am currently using herbs and vitamins to keep myself in check. Just suffered an obstruction this weekend, first one in 2 years....soooo upsetting. After years of fretting about loose BMs I am finding now that I am getting backed up. Any advice?
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  • Posted

    My heart goes out to you and your child. Watch his diet, mushy foods pass better. I have found avacodos and bananas helpful. I also use a number of herbs and vitamins, vitamin d being of utmost importance. Also, lots of fluids. There is a product called sedacrohn that I got online and it stops my loose BMs within hours. I would talk to them about their dosage recommendations as he is so young.
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  • Posted

    Lots of information available on the Crohn's and Colitis UL website, section dedicated to children, good luck
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