Newly diagnosed and very frightened!

[Louise*]

Hi, my name is Louise and my son Lewis (14 next month) has been diagnosed with Crohn's.
He began suffering with diarrhoea in July during a family vacation, which has continued ever since. He had an endodcopy on 1st October which showed ulceration and inflamation at various points of his small and large bowel and duodenum. Crohn's was confirmed a couple of days later from the results of his biopsies.
He began Modulen two weeks ago and has made amazing progress with all symptoms pretty much gone, abdominal pain, nausea, diarrhoea (now only occasional loose stools and only going once a day), he has gained 3kg in weight and all looks good.
But now they want him to start taking Azathioprine and I am frightened to death at the prospect! This drug has such a long list of possible side effects a lot of which could be very serious to his health, I really don't know if I am doing the right thing. I am just so full of what ifs.....what if he finished the Modulen in 6 weeks time and was in remission, maybe he would stay in remission without the Aza, but we had chosen to pump him full of this drug which could potentially be so harmful.
I am just so scared for him worried about whether we are doing the right thing.
Any advise and reassurances would be very much appreciated.

 

[Amy2]

My son's dr seems to want to go easy on the drugs.

16 year old son was diagnosed in March, given a 3 day course of steroids, followed by 6 weeks of EEN, which put him into remission and he is still in remission. The only drug he takes is Pentasa 3 xs a day. His weight has gone from 79 lbs to 115. He's been following the SCD since May.

 

[Jmrogers4]

Welcome Louise, sorry you had to find us. My son is 14 diagnosed at 10. I'm glad he is feeling well and doing good on the modulen unfortunately usually once food is reintroduced the symptoms come back which is why a maintenance medicine is put in place.
Yes all the side effects listed are scary but then if you read the side effects of tylenol they are pretty scary as well or even the chances of an accident when they get into a car or play sports yet we let them do these things every day, why because the outcomes far outweigh the risks. That is not to say we have not all struggled with the scary drugs and our precious children but when they are living normally and doing all the things they want to do the drugs become our little miracles.

My son was on Azathioprine for a few years with no side effects and allowed him to be nearly free of symptoms they do regular blood tests to check levels of not only the aza but liver and pancreas to make sure he is processing it well and it is at theraputic levels. There is also a test before hand to see if his body can process it called prometheus TMPT and tests the metabolites needed.

Azathioprine can take a several weeks/months to reach theraputic levels so it is generally started along with the modulen, the idea being once the modulen is done the aza will be at theraputic levels and working.

It can be very overwhelming trying to take it all in and make the right decisions for your son but you have found a wonderful place full of support and able to answer most questions you have. Somebody on here has generally been there, done that.

Offering you lots of hugs and support.

 

[Willowcat05]

Hi Louise,
My son was 12yrs when he was diagnoised he also done 8wks EEN through NG tube he could not drink it and then started azathioprine he has been on aza for 17months with no side affects he has just had his first surgery to remove 35cm of small intestine and 10cm of colon due to strictures and is doing a course of Modulen again. If you choose for your son to go on to Aza he will have weekly bloods done to check everything is okay so if anything changes they will pick it up quickly.:ghug:

 

[Chester31]

Hi Louise,
We have no experience with Aza but I just wanted to offer my support. My son was diagnosed in June (age 14) and had similar symptoms to Lewis - diarrhoea, abdominal cramps etc. He's done 8 weeks on Fortisip and his symptoms have also pretty much gone. His only other medication is Pentasa. He's just had his follow up appointment and, apart from the addition of iron supplements, they're happy to keep him on Pentasa only for now. This forum is fantastic - there is so much information here - and so many people who completely understand what you're going through.

 

[Mehita]

Hi Louise... I've got a 13 year old (dx at 8) who is currently on Azathioprine. I just want to second everything JMRogers said above. The drugs can be scary until you seem them working and you get your child back. We haven't seen any side effects whatsoever and they do monitor blood work regularly, no less than every three months.

Untreated Crohn's is far, far worse than these meds. My son has 10" fewer small intestine because of that.

Keep us posted on what you decide and ask as many questions as you want. We're here for you!

 

[positivemum]

Hi

We have been through the EN diet and done AZA. He was fine on it for 2 years but WBC has dropped too low so now it is Pentasa only for now. Take all the advice you can and trust your instincts. Good luck - AZA worked for us.

 

[kimmidwife]

Welcome Louise,
I am so sorry to hear about your son. It is a tough road but there are tons of people on here whose kids have used aza successfully. I hope the modulen and aza put him quickly into remission and he feels better. I don't have much advice about the drug itself because my daughter was never on it she was on a similar drug called Imuran and she was allergic so that ruled out all those drugs for us. I hope it works well and you don't have any issues. Keep us posted!

 

[CrohnsKidMom]

Hi Louise, and welcome! I can totally relate to your feelings. My 8 yr old son was also dx'd in March. We were given the choice of either 3 mos of prednisone, or 3 mos EEN via NG tube. We chose prednisone and a maintenance drug was started at the same time as it takes awhile to kick in. Aza was the maintenance drug our GI recommended. Like you, I did not want to go that route, but the GI drew me a visual picture of what things may end up looking like if we didn't get him on a good maintenance med. Not pretty. The good folks on this forum were, and are, a wonderful support. As it turned out, my son reacted to the aza and could not continue on it-high fevers and elevated liver enzymes. He is now on methotrexate injections and is in remission. God bless as you make these difficult decisions.

 

[CarolinAlaska]

Hi, my name is Louise and my son Lewis (14 next month) has been diagnosed with Crohn's.
He began suffering with diarrhoea in July during a family vacation, which has continued ever since. He had an endodcopy on 1st October which showed ulceration and inflamation at various points of his small and large bowel and duodenum. Crohn's was confirmed a couple of days later from the results of his biopsies.
He began Modulen two weeks ago and has made amazing progress with all symptoms pretty much gone, abdominal pain, nausea, diarrhoea (now only occasional loose stools and only going once a day), he has gained 3kg in weight and all looks good.
But now they want him to start taking Azathioprine and I am frightened to death at the prospect! This drug has such a long list of possible side effects a lot of which could be very serious to his health, I really don't know if I am doing the right thing. I am just so full of what ifs.....what if he finished the Modulen in 6 weeks time and was in remission, maybe he would stay in remission without the Aza, but we had chosen to pump him full of this drug which could potentially be so harmful.
I am just so scared for him worried about whether we are doing the right thing.
Any advise and reassurances would be very much appreciated.

I totally understand your reservations, but you must realize that the chances of his staying in remission without a maintenance med are very low. We were at exactly the same place you are last spring. We chose the sister drug (6MP), which is essentially the same as AZA. The alternatives look even scarier. I am a little surprised your GI didn't mention the AZA from the beginning and get him started from the get-go (I guess they realize we parents have so much to swallow and accept after diagnosis, that mentioning this little piece would put us in a nut-house in the beginning!) Anyway, it takes about 12 weeks to get it to work in some people, so the sooner it gets started, the better.

The side effect profile looks scary, but the Crohn's child not in remission is even scarier! My daughter hasn't had any major effects from her 6MP, and she is doing better than ever now. The docs watch for these bad effects and the unreversible ones are very rare. Trust your doc - they really are looking out for your son's best interests...

Carol