My 9 year old son oli was diagnosed with crohns then indeterminate colitis in march 2011. I have found it so hard to stand by and feel so helpless when he is in pain and losing blood, he is such a fighter and is determined to get back to playing football for his team and to get back to school full time. I worry he is missing out on so much. He gets frightened by what is happening to him and the way the meds make him feel and he hates it when he cannot make it to the toilet on time. Hopefully we will turn a corner soon!
9 yr old diagnosed in march with crohns/indeterminate colitis
- Thread starter MumofOli
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Help Support Crohn's Disease Forum:
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Dear Mum of Oli,
There must be nothing worse than seeing your child suffer. Feel so sorry for you. There is really nothing I can say to you to make things better. I am happy for you that your son is strong and a fighter and that he has you to help him through when he is having a bad period. I sincerely hope that things pick up soon, he gets in remission and stays there. I wish I could both send you some courage and patience in a bottle but unfortunately that is not possible. Be sure that I will be sending positive thoughts to you and your little son. I am sure we will all be here to support you whenever you feel the need.
There must be nothing worse than seeing your child suffer. Feel so sorry for you. There is really nothing I can say to you to make things better. I am happy for you that your son is strong and a fighter and that he has you to help him through when he is having a bad period. I sincerely hope that things pick up soon, he gets in remission and stays there. I wish I could both send you some courage and patience in a bottle but unfortunately that is not possible. Be sure that I will be sending positive thoughts to you and your little son. I am sure we will all be here to support you whenever you feel the need.
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I was diagnosed when I was around his age, 9 or 10, and I think staying positive is the most important thing. There are more options now so I hope you find something that works wonders for him. I had three rounds of remicade in 1998 and am just now getting back on meds at 27.
Has he been on prednisone? A quick pred taper is usually the first course. In most cases, it will knock out the inflammation then the maintenance meds like the Aza take over. Has Oli been scoped? Just curious why they changed from crohns to indeterminate colitis? Or is the dx both?
Yes he is currently on 15mg of pred (dropping 5mg a week now) and 10mg of omeprazole. He was scoped in March '11 and given diagnosis of chrohns and started on modulen liquid diet for 6 weeks but after 4 days he was rushed into hospital and had to have a blood transfusion. They had the biopsy results which showed colitis - hence indeterminate colitis diagnosis. They stopped liquid diet and prescribed 40mg of pred and was doing fabulously well until Azathropine! But yesterday the consultant lowered dose to 25mg and hopefully we will get back on track.
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I saw your query about the multi-vit. We were told to put our son on a "good" children's multi. Since our kids have absorption problems anyway, it can't hurt to give them the extra vitamins and minerals. How often is Oli having blood drawn?
DustyKat
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Hi Mum and :welcome:
I'm so sorry you had to find your way here but on the upside it is a fab place for support and info!
If you haven't already found it we have a parent's forum here that you may like to browse through...
http://www.crohnsforum.com/forumdisplay.php?f=49
Also make use of the search function on the right hand side of the blue bar.
Did your son have a TPMT test prior to starting Azathioprine?
Keeping my fingers and toes crossed that the Pred and Imuran get your little guy back on track!
Good luck and sending loads of hugs your way...:hug::hug::hug:
Welcome aboard, :sun:
Dusty. xxx
I'm so sorry you had to find your way here but on the upside it is a fab place for support and info!
If you haven't already found it we have a parent's forum here that you may like to browse through...
http://www.crohnsforum.com/forumdisplay.php?f=49
Also make use of the search function on the right hand side of the blue bar.
Did your son have a TPMT test prior to starting Azathioprine?
Keeping my fingers and toes crossed that the Pred and Imuran get your little guy back on track!
Good luck and sending loads of hugs your way...:hug::hug::hug:
Welcome aboard, :sun:
Dusty. xxx
Thanks Dexky for your help on vitamins - it's a minefield out there!
Oli is now on weekly blood tests then down to fortnightly in a couple of weeks, he's not tolerating Azathropine at all at the moment and we are taking one day at a time.
So glad I found this forum, it's amazing!
Oli is now on weekly blood tests then down to fortnightly in a couple of weeks, he's not tolerating Azathropine at all at the moment and we are taking one day at a time.
So glad I found this forum, it's amazing!
