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Crohns infliximab

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Stayk838
Stayk838

My 8 year old son was diagnosed in May with Crohn's disease, he was initially put on modulen feeds for ten weeks which had great results but as soon as he started to eat again the problems started. They tried him on azathioprine which made him violently sick vomiting blood And became poorly again so he was put on a course of steroids due to another flare.

The steroids have helped and they tried him 6mp to maintain remission which again he reacted badly too again vomiting, diarrhoea etc. He was supposed to stop the steroids a week ago but hey have kept him on them. I am so worrie as soon as he stops we are back to square one again and I know long term steroids are bad for him. He was in hospital last week due to being in so much pain and they did talk about infliximab. He just doesn't seem to be able to tolerate the immunosuppressants.

0 likes, 7 replies

7 Replies

  • sharon09529
    sharon09529 Stayk838

    Posted

    Hi Stayk838,

    So sorry to hear about your lads problems, I have some questions if that's OK?

    When he is on steroids are you able to monitor what he is eating/able to tolerate? Include drinks (particularly fizzy ones? And fruit juices)

    And when he is off the steroids on immune supressants does he eat/drink same foods?

    could the same foods trigger episodes? Which steroids can help him cope with by controlling inflammation, but the immune ones cant control?

    May be worth keeping food diary if not already doing and check back when he first flares to see if any pattern ( if already doing this please accept apologiesxx)

    Other thing was have they scanned him for a stricture ?

    Must be so worrying for you and hope you get a solution soon.

    • Stayk838
      Stayk838 sharon09529

      Posted

      Hi thanks for the message they haven't scanned him I was hoping they would at the hospital last week but said despite he was in so much pain because it settled and he was "clinically wel" they didn't need to ?? when he came off the modulen we reintroduced food carefully and know certain foods do definitely make him worse including certain fruits fruit juices we stick to water non fatty foods and lactose free milk even though on steroids we are still careful but he seems to complain a lot less of foods upsetting his stomach ?! I find it confusing and am starting food diary iv not had a lot of advice or help re foods but also appreciate everyone is different ! They say he needs immunosuppressants long term but he has reacted badly so far to the aza and 6mp so feeling unsure about what's next especially once he comes off the steroids
    • nannylin
      nannylin Stayk838

      Posted

      So sorry to hear of your young sons problems, it's bad enough developing this condition as an adult but it seems so unfair for s child to have it. I was on an immunosuppressant for a long period with no ill effects and then tried Infliximab which was no help at all. As an adult you accept the risks involved with these drugs but it must be hard to decide with a child so young as he may have to be on and off them for many years. Eventually I was found to have a stricture and had a couple of obstructions so had surgery. Glad to say I have been much better since (5yrs) although my recent routine colonoscopy showed some inflammation at the join in my colon. I wish you and your son well in your quest to find the right treatment for him .
    • Stayk838
      Stayk838 nannylin

      Posted

      Saw his consultant today they are starting him on methotrexate injections has anyone had these before ? I'm concerned about the sickness as he was so sick with the other immunosuppressants but they are going to give him an anti sickness tablet aswell .
    • Bong1968
      Bong1968 Stayk838

      Posted

      Hi. Sorry to hear that your son is having such a rough time.

      I'm surprised at how many different treatments the consultant has tried in such a short time!

      Over the years I have tried most (diagnosed in 1987/88) and have found that steroids worked the best for me.

      It's usually prescribed for me at a reducing 8 week course, starting at 40mg. Unfortunately the symptoms usually crept back again after a while.

      Azathioprine made my hair start to fall out, on the 5th go at Infliximab I got anyphalactic shock, Humira injections did nothing - so I was given Methotrexate injections

      This is another strong drug (a form of chemo) so it's likely to make your son feel nauseous if he is already not tolerating other drugs. They can give Folic Acid on alternate weeks to the injection and this is supposed to help. Then you can have the medication in tablet form. 

      I decided to come off of this drug as It didn't appear to be helping and it was agreed the the operation that I had been putting off for over 20 years was inevitable.

      As for diet, I have found that avoiding too much wheat, yeast and sugar helps during a flare up. It's not an allergy thing but an 'intolerance' to certain foods until things heal a bit.

      A bland diet may well help for a few weeks until things settle for your son.

      He may find goats milk easier to digest too.

      i do hope things improve soon for your son. It's a pretty miserable situation to be in at the moment for him..

      Please send him my love!

      Any questions and I'll be glad to try to help!

    • Stayk838
      Stayk838 Bong1968

      Posted

      Hi thanks for the reply.

      The only thing that seemed to settle his symptoms was the modulen but he gets very fed up of this and actually refuses the drinks now. As soon as we stopped things started to flare up again he has been on steroids now and is coming off them he started at 40mgs and is now down to 20mg reducing them each week. I've never seen him look so well on these and has been fine but our consultant seems to think as soon as we stop them it will start again and therefore he needs a long term treatment to keep things in. Remission. We have a nurse coming out Tuesday to start methotrexate injections but am dreading

      This as he reacted so badly to all of the other immunosuppressants. He will be taking folic acid day before the injection and antisickness tablets in the hope he isn't sick again.

      If these do not work I feel we are running out of options and will only have the infliximab to try which the doctor wanted to keep I case he becomes really ill in the future as he will over time become immune to the drugs and being 8 what do we then do in the future? I read so much about diet but doctors seem to not suggest diet has anything to do with it and I could end up denying him nutrition that is needed for his growth as he still has lots of growing to do and also the steroids long term affect this aswell.

  • stephaney28634
    stephaney28634 Stayk838

    Posted

    Hi, sorry to hear that your son is going through a lot. Hope the influx iamb helps him.
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