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8 year old son diagnosed with crohns

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Stayk838
Stayk838

My son has recently been diagnosed with crohns, he is 8 years old, after suffering from stomach cramps diarrhoea with blood in over the past year. They are wanting to start him on a liquid only diet for 7 weeks using nutritional drinks Modulen. He does not want to be fed through a nasogastric tube and is going to try and drink the liquid. Had anyone's children had to do this. I thought it is a safer option than steroids because of side effects but this is all new to me ??!!!

0 likes, 23 replies

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  • nannylin
    nannylin Stayk838

    Posted

    Hi Stacey I have no experience of liquid diets and I am a mature crohns sufferer who has had steroid, immuno suppressents and surgery so cannot offer you advice for your son. I just wanted to offer hugs to you both. To have this horrid disease at such a young age is awful and I am sure you will have some tough times to go through but there is a lot of new treatments and support out there. I wish you well in getting the help your young man needs.
    • Stayk838
      Stayk838 nannylin

      Posted

      Thank you nannylin it is a lot to take in and makes me feel so helpless even though he has been so brave ! They have spoken to us briefly about steroids and immuno suppressants but waiting to see the doctor this week to find out some more about how they will treat him. I have been trying to find out and read as much information as I can as I know little about Crohns.
    • nannylin
      nannylin Stayk838

      Posted

      In most crohns cases sticking to a bland diet helps. No fruit with pips or seeds (strawberries, black currant etc) no brown bread, brown rice, baked beans etc. Fibre is an enemy to our guts. I also stopped dairy and changed to soya milk. I can eat hard cheese but cooked is a problem as the fat is released (fatty foods are also not good) You will work out what causes a flare. I found steroids amazing except for mood swings and poor sleep but as a short term brilliant. Make sure he takes vitamin supplements as he will not be absorbing nutrients. If you go down the steroid route ask for calcium supplements to protect his teeth and bones (I found this out after the damage had been done). There is a lot of info on the Internet and also a lot of horror stories - beware. Also be prepared for him to feel extra tired at times and I would make his school aware of this too, he is not being lazy.
  • elaine16970
    elaine16970 Stayk838

    Posted

    My son was liquid fed 3x for 8weeks during a spell of 18 months .He was 12 at the time and was allowed to it mixed with nesquick milk shake , he coped really well with it x
    • Stayk838
      Stayk838 elaine16970

      Posted

      Thanks Elaine they said it will be for about 7 weeks, seems a long time but as long as he's not feeling hungry hoping he will be able to do it did it help with your sons crohns ?
    • elaine16970
      elaine16970 Stayk838

      Posted

      He wasn't hungry Stacey I think we took it harder than he did ! It was difficult at meal times and for my younger son who was used to having sweets and things to not rub drews nose in it by eating in front of him, grandparents came in handy at mealtimes lol. It did help with the crohns I have to say, rested his gut and gave it time to heal , we thought it was a one off but he had it 3 times . Drew took it all in his stride x
    • Stayk838
      Stayk838 elaine16970

      Posted

      My son has been so brave and fine about everything like you said iv taken the whole thing worse than him it was bad enough starving him for colonoscopy and endoscopy I felt awful
  • IndieHannah
    IndieHannah Stayk838

    Posted

    Hi Stacey

    Firstly just want to say you are doing the right thing regarding avoiding the steroids. Your son is so young and the long term implications of steroid usage could really affect his development!!

    I have had Crohn's for over twenty years and have managed the disease mainly with the periodic use of Modulen IBD. It is like baby formula, needs to be kept cool and is ok mixed with Nesquick milkshake flavours. I tried the flavours that are prescribed but they are awful!! The formula has a naturally occurring anti-inflammatory which is a bonus and once your son has adjusted to the diet it should give his bowel a complete rest.

    It takes a few days to introduce it but once up to the right amount of calories per day he shouldn't feel hungry. You do have to have regular feeds throughout the day and it can make you grumpy and depresses to be excluded from the usual social activities of meal times. It can be difficult not because you're hungry, more because you miss the pleasure of actually eating.

    I would recommend you get a dietician assigned to work with you for the entire process. They can be a great support and encouragement. Also, when it's time to reintroduce solids they can really help. This is when it's possible to discover trigger foods that might need to be avoided.

    Hope this is of some help. The liquid diet has saved me from steroids, which I have had, and trust me when I say if you can possibly avoid them then do. They are easier meds to take than the diet, but long term the diet is cleaner, safer and far more productive in learning to manage your symptoms. Your son is so young I'm sure he'll cope brilliantly with the right support.

    I wish you the very best and if you need any further information get in touch

    Hannah

    • Stayk838
      Stayk838 IndieHannah

      Posted

      Thank you Hannah as I said it's all new to me so good to hear from people who have been there and tried different treatments as he is so young I really want to steer clear of anything with side effects such as steroids unless absolutely necessary ! X
    • IndieHannah
      IndieHannah Stayk838

      Posted

      My philosophy has always been to use steroids only in hospital emergencies..... They truly are life savers short term.

      Good luck with everything

      H

    • elaine16970
      elaine16970 IndieHannah

      Posted

      I agree indiehannah , my son was really bad when he was young nothing seemed to work he was on 144 tablets a week and this only kept him borderline stable. They put him on steroids at 12 and struggled to get him off them at 13 he became adult steroid dependent that more than the crohns has such an impact of his young life, he became a recluse as he was so self conscious about his looks as he ballooned in weight. At 15 he had a say in his treatment he chose to come of them resulting in a lot of hospital admissions then methotrexate seemed to work for a while , he now has 4 weekly transfusions of infliximab , which is now starting to fail 😢x
    • IndieHannah
      IndieHannah elaine16970

      Posted

      Hi Elaine

      So sorry to hear that your son is having such a tough time. Has he tried the liquid diet option??

      It's tough, but no where near as detrimental to his overall health.... Physically, mentally or emotionally.

      I do hope things improve for him.... And you

  • penny49988
    penny49988 Stayk838

    Posted

    Hello,

    I just wanted you to know I'm thinking of you and I hope that all goes well.

     

  • kay68731
    kay68731 Stayk838

    Posted

    Hi Stacey

    I know how you feel, my 7 year old daughter was diagnosed with Crohns back in April. She is now on her 7th week of Modulen.  I got a Breville Active Blender that has 2 x large and 2 x small sports bottles.  This makes it super quick to whizz the shakes up once a day using Nesquik to flavour and then store in fridge.  She has a lunch bag that I put an ice pack in with a couple of straws and the 2 x small bottles that she takes for school lunch. She has 1 large bottle for breakfast and another for dinner.  Your dietitian will advise you on quantities.  Not once has she ever said she was hungry, her energy now is amazing, her skin has improved so much and her toilet trips are drastically reduced.  In the beginning I also got the straws that had the milkshake balls in to encourage her - I could only find in Waitrose and Aldi that stocked these. She could also have water and a fox's glacier mint as a treat. Basically, this has shown us that she was not absorbing any of the nutrients that she should have been from food so was malnourished and the Modulen has helped restore her system and has given her a chance to hopefully get Crohn's under control.

    • Stayk838
      Stayk838 kay68731

      Posted

      7th week My son has done his first week tomorrow and it has been a struggle he became very upset at the fact he could not eat food and I cannot bring myself to eat or cook around him but as his sister is coming up 2 she is constantly eating. His toileting has reduced dramatically already so hoping his is going to help him and the doctor has advised us 6 full weeks before reintroducing food. Trying to take a day at a time as he loves his food but realises this will make him better. Are you flavouring the shakes I can only find strawberry or raspberry crusha and have been looking for vanilla for a change ?
    • IndieHannah
      IndieHannah Stayk838

      Posted

      Sounds like a brave young man and like it really is helping.

      It is so hard to not be able to eat food and the first time and also the first week in is the toughest..... But it's the safest and in my experience the most effective treatment.

      You can get a whole range of flavourings made specifically to go with the Modulen made by Nestle. But they need to be prescribed by your doctor. They definitely do a vanilla flavour. I've used them but really didn't like them but your son might.

      Other than that Nesquick flavours are lovely with Modulen. Chocolate and banana are great and they aren't full of nasty chemicals.

      Hope this is of help.

      Wishing you all the best of luck and fingers crossed your boy adjusts and copes well with the treatment

      Hannah x

    • Stayk838
      Stayk838 kay68731

      Posted

      Hi Kay was wondering what happened after the modulen diet with your daughter and did it out the crohns into remission ?
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