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Azathioprine for crohns extremely worried for son

Posted , 8 users are following.

Stayk838
Stayk838

My son has been on modulen for 6 weeks now and has to continue for another two weeks. Our consultant had today said we are to start him on Azathioprine. I'm so concerned as he is only 8 years old and as much as I do not want him to have to live with effects of the crohns which at times has been awful I'm so scared of all of the side effects and long term effects of the medication. Also reading on here that you can only take it for so long what happens then? The doctor has reassured me that it is the lesser evil of the two and will enable him to lead a normal life and without it she thinks he will continue to have flare ups and be ill. Part of me wants him to have it but also a big part of me doesn't want to put him at any risk and as much as I know there are risks with every medication the risks such as cancers are really making me panic !!! Has anyone's child been on Azathioprine

1 like, 11 replies

11 Replies

  • sharon09529
    sharon09529 Stayk838

    Posted

    Dear Stayk

    Don't know if this helps but I tried aza but it didn't suit me had back and thigh cramps and some minor breathlessness and fatigue, but I am 51 year old woman and overweight.

    The doseage would of course be appropriate for your little boy, and he would be monitored with regular blood tests, so as long as he doesn't get similar side effects it is worth a try to get him remission from his crohns. I suspect he's facing a long journey and there will be ups and downs, please give him a cuddle from me and good luckB-)

    • Stayk838
      Stayk838 sharon09529

      Posted

      Yes he will be monitored closely just a worry I suppose when it's your child. Fingers crossed he can just keep well for as long as possible . Thank you x
  • helen13731
    helen13731 Stayk838

    Posted

    Hiya Stayk, 

    My daughter Kate is 12, and was diagnosed in May with Crohns, she did 6 weeks on the Modulen, and responded really well to it too. We were then also told she'd have to go on Azathioprine, which, like you, worried us loads too. After speaking to our GP and the IBD nurse, Kate started on Azathioprine 3 weeks ago, and so far is doing ok. She's having weekly blood tests to keep an eye on everything, and altough I'm still not completely comfortable with the possible side effects ( don't think I ever will be!), her maintaing remission, at the moment, outweighs the possible risks. Good luck, whatever decision you make, and hugs for your little boy .xxx.

    • Stayk838
      Stayk838 helen13731

      Posted

      Thank you Helen it helps to hear from people in the same situation. We've started to give him the Azathioprine and yes as you said I don't think I will ever be 100% happy he's taking it but need to look at the bigger picture and hopefully keep things as normal as possible for him. How has your daughter been since reintroducing food did you do this gradually ??
    • helen13731
      helen13731 Stayk838

      Posted

      Hi Stayk, yeah quite gradually, a couple of new foods every day over a few weeks. Found a couple of things that don't seem to agree with her, but she eats almost everything she ate before, plus some foods she's tried since.....the Modulen seemed to give her an incentive to try new things when she can. smile  Just been dealing with her first cold since starting the Azathioprine, which has made me fret a little, but she seems to be fine. It is nice to talk to another parent with a child with Crohns, it's quite scary isn't it? Hope your son does well on the Azathioprine, take care .xxx.
    • Stayk838
      Stayk838 helen13731

      Posted

      Thanks Helen yes it does certainly help to speak somebody else Scott has just over one week left on the modulen and then he can hopefully have some foods we havnt really spoken to the doctor about the reintroduction of food yet. I just think he will be glad to eat anything !! It's been a long 8 weeks. He has his first blood test Friday but yes as you say it does make you fret. Hope your daughter is well x
  • stephaney28634
    stephaney28634 Stayk838

    Posted

    Hi, I am on Azathioprine for cronhs flare up. I know your worries, they would put him on another tablet if these meds don't work. Let me know hiw he gets on.
  • Dunbegger18
    Dunbegger18 Stayk838

    Posted

    Please do not worry, I am on Azithriopine and it is the best move I ever made, as long as he has regular blood tests xxx

  • lynne42182
    lynne42182 Stayk838

    Posted

    Hi

    im really sorry to hear that your son is having such a bad time, flare ups are the worst thing.

    i have used Azathioprine in the past, and the one thing that helped me was to know how I was being looked after by the team in my hospital, were great,they check bloods at least once a fortnight, and I have had other tests as well.

    th biggest problem is that if you don't try it, what will happen if he flares again, steroids? And they are really evil little pills, so it's going to be a case of see what works

  • lilMango
    lilMango Stayk838

    Posted

    Hi StayK838

    My 13 yr old  is presently finishing his 2nd session of 6 week modulen and they have put him on 75mg of Aza, now for nearly 4 weeks.We have had lots of colds at the beginning but a real change in energy levels for the better at the beginning.Recently a few issues with some pain near his pancreas which we are trying to sort out but other than that he is ok.Regular bloods are done and you must go to your GP if anything unusual happens.We were very hesitant aswell of this drug but it does out weigh the massive weight loss and pain.At present we are unsure if this drug is going to work due to issues this week with some marked levels being high.Our ibd nurse is fantastic and we ring anytime.It is so hard when you see your kids struggle with this.I hope this helps and your child gets into remission quick

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