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[ruthio27]

Hiya all!

My 11 year old son was diagnosed with crohn's about 18 months ago after a year of weight loss, vomiting and total lehargy. His first symptoms were erythema nudosa which was quite alarming, and when i googled his symptoms i usually came up with far worse things like leukemia! At first crohn's was not even considered because he didn't have diarrhea, but i insisted they tested him for it after a friend said the symptoms were the same as hers. It was a releif in the end to finally get his diagnosis, because we could move on and start dealing with it.

He was initially started on 40mg prednisoline and Mesalazine sachets 3 times a day, and it really worked, suddenly he had energy! I'd forgotten what it was like to have an active child! The steroids were scaled down and after 6 weeks, he came of them and was managed ny the mesalazine alone for the next year or so. Unfortunately in the the last 3 months or so, his energy levels have dropped again and he has become aneaemic and the bruises have come back. We went to see our consultant and he decided that, instead of steroids, this time we should try the Modulen IBD liquid diet for 6 weeks. Charlie has been on this now for four days, and he is absolutely miserable!!! He cant stop thinking about food and has been on the verge of tears daily. He isn't hungry exactly, he is just missing the sensation of food so much! I really don't know what to say to him! He knows it's for the best and could make him well for a good while, and he knows that we cant keep on with the steroids all the time, but it doesn't make it any easier!

Does any one have any advice on how we can get him through this?

We've still got about 35 days to go!!

Thanks for listening!

Ruth

 

[Stleger88]

wow I know what it's like to be young with crohns and its not fun, they tried a all liquid for me and it failed miserably but the doctor was telling and doing everything wrong, what exactly are they giving him? There are alot of triggers for crohns and its difficult to name them all cause its different for every person but I've found that simple sugars, persvatives ( High fructose corn syrup, dextrose) wheats, starches) potatoes, corn etc.) are all really bad triggers for myself and most other people. If there is any place where you and your son can find help it's here So I want to welcome you and if you have any questions just ask and you shall receive the answer

 

[Guest]

hi Ruth & welcome

so sorry to hear what your little boy is having to go through i've never had experience of the modulen diet myself, but there's a thread on it here http://www.crohnsforum.com/showthread.php?t=5364&highlight=modulen

at only 11 years old, it must be very hard for your son to accept he can't eat anything for a whole month! hopefully it will go quickly for him, and he'll see the benefits after.

have you joined NACC? they have a kids advice section.

 

[soupdragon69]

Hey Ruth,

Please tell me you have a good dietitian that is supporting you? She/he should be able to come up with some ideas to help him cope.

Its an extremely tough thing to do for an adult never mind a child of his age who is totally aware of it all.

What I mean is you are very right about the sensation of eating - its a bit like a smoker not knowing what to do with their hands when trying to quit. The difference is you need food to survive. Its normal to become virtually obsessive about certain foods and in some cases dream of them too!

The only way I cope each time I am on Elemental drinks (which I am at the minute) is to take it hour by hour. I use almost a diversonal therapy by thinking of something else I can do to take my mind off it. Something I generally become engrossed in. DVD, good book, hobby that sort of thing. Also that I would be disappointed in myself for quitting when I have put all the work in to date as I look back (even if its only a few days).

The first 4-7 days are the toughest thing he will ever do Ruth. Its hell because you lose fluid (we get approx 70% of our fluid from food) and as a result until you balance out again (I am assuming you had to gradually increase the volume to a certain level) on the drinks you can feel very drained, lethargic, dizzy etc.

Something I will say is that my dietitian told me the first time I was on it for several months that all the dietitians decided to try it for a week so they knew what their patients go through. By the end of day one they had ALL given up! They couldnt cope with the taste, the dizzyness, the fatigue and the NOT EATING!! What does that tell you!

We all need emotional support whilst doing these supplements and the majority dont realise it. As I said before we need food to survive so its nothing like quitting something like alcohol or smoking for instance where you quit and just have to not have it again. Hope that makes sense?

If you havent joined the NACC (which I think is free for kids) give them a ring and see if they can come up with any other ideas.

He sounds a great kid Ruth by understanding the reasons why he cant have steroids etc and that this is better in some respects. Your postive "vibes" can do alot for him. Being understanding but giving him a gentle nudge when needed is a good thing trust me.

You are doing the right thing in trying to find support for him but also you and the rest of your family (if there are more) as you need it too - dont forget that!

Keep asking and posting Ruth we will always listen and try to help ok? You will find a few other parents here also.

Welcome to the forum.

 

[ruthio27]

Thanks all! I've joined both NACC and CICRA and im hoping to get some tips from them. The main problem is being around other kids, because, obviously they just don't get it! My adult friends and family make the effort not to eat in front of him and distract him in other ways,but there is no way that i could or in fact would ask other kids to go without! For once i'm grateful that i don't have any other children so there is no conflict at home at least.

We are gonna keep at it, but i cant say its not tempting just to say sod it! When he's nearly in tears asking just to "lick a bit of ham!" it's soul destroying!

Im gonna go on the slim fast plan though, so at least he will see me living on god awful milkshakes most of the time too!

The main problem with Charlies symptoms are that they are subtle. It's not like he will eat a cheese sandwich and spend half the day on the loo, in fact he suffers from remarkably little diarrhea. He loses weight slowly and becomes very aneamic when he is suffering from a flare up, and vomits maybe every other day. He has also been limping pretty much the whole time. It makes it really hard to pin down what foods exactly are upsetting him.

Anyway, i shall stop ranting now, it's nice to have somewhere like this to get it all off my chest!!

I shall keep you all posted

Ruth

x

 

[Stleger88]

I hope he gets better