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10-16-2011, 01:03 PM   #61
SilverLady
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Hey!
I'm late to the game I'm afraid!!
I just want to say congratulations;
And I hope everything stays as planned!

Well Done!
10-17-2011, 04:54 AM   #62
DustyKat
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Thanks for the update!!!

It's so fab to hear that things are going so well! Long may it continue!.

Dusty. xxx
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10-29-2011, 05:24 PM   #63
zipster1
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When my son was put on modulen my wife and my sister-in-law started a fund in a tin. Tonight we all went to my sons favourite restaraunt and had a slap-up meal. The look on my sons face through-out the meal was worth it. He was laghing and joking with me and my bro-in-law, it was good to see.:-);-)
10-29-2011, 07:08 PM   #64
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Oh wow, that is priceless!!! How fab for you all...


Dusty. xxx
11-14-2011, 02:45 AM   #65
zipster1
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Modulen no-more!:-)
My son kept up with minimum dose of modulen for full month after he had to and i am so proud of him for doing so with no coaxing from me or his mum!;-):-)
So far so good with regard to flare-ups! ( Prob just jinxed it by posting it!:-(:-P but thought would update the thread)
11-15-2011, 01:20 AM   #66
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Woohoo! Good on him!

I hope the good times last and last and last!...

Thinking of you,
Dusty. xxx
11-15-2011, 08:49 AM   #67
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Great news! Sending wishes that he continues to feel well for a long, long time!!!
12-25-2011, 05:31 AM   #68
zipster1
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Sorry not been on for while!
Run up to festive season was hectic both @ wrk and at home!:-)
Andy doing great. Nothing nrw since last post but thats a positive isn't it?

Hope all is good with the rest of you.


MERRY XMAS AND HAVE A GREAT NEWYEAR.
12-25-2011, 03:49 PM   #69
DustyKat
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Nothing nrw since last post but thats a positive isn't it?
It surely is!

Thanks so much for the update hun and may the good times just keep rolling on!

Dusty. xxx
01-16-2012, 01:06 PM   #70
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first follow-uo apmnt just been done today. Doc were very pleased with wee-fellas progress and have gave us next apmnt for 6 mnts from now!:-) Also gave us cautionary warning that his system just gettn back to normal so attentiion still needed. like we didn't know that eh!!:-P;-):-)
We were asked as a family if we would participate in a clinical research program to try and help in the understanding/treatment of crohns etc. No brainer there! Bloods taken from all 3 of us for testing.
01-16-2012, 11:20 PM   #71
DustyKat
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Thanks for the update zipster!

It's so fab to hear that things have been going well, YAY! May it keep on keeping on!...

Keep us posted!


Dusty. xxx
01-17-2012, 03:08 AM   #72
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Hello zipster,

It was great to hear your good news. I think it helps us all to see positive news - thank you. And I hope all continues well.

best wishes,
LilyRose
01-18-2012, 11:28 PM   #73
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So glad to hear he's doing well!!! Great way to start of the year!!
02-01-2012, 02:11 AM   #74
zipster1
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Hosp called ystdy and told us that wee-fellas inflamation markers were still too high from results of last bloods taken. Recomend him going on Azarthioprine. Will leave us for couple days to think it over. Is this a good thing or bad thing? Apparently the Ibd nurse told my wife a flare-up looked likely soon so this is a preventative step right?
Thankin you in advance
;-):-)
02-01-2012, 06:26 AM   #75
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Aza is a very common maintenance med that seems to be the first stop for many. There are several formulations of it. Mercaptopurine(6mp) and Imuran are two that you'll see commonly used on here. My son was on 6mp for about 1.5 years w/o any negative side effects. It failed to maintain remission for him but I was sorry to see it go. He had no issues with it and it's just a pill once a day. I hope it works for your little guy!
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02-01-2012, 11:31 AM   #76
Tesscorm
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My son may be in a similar position. EN treatment (6 weeks formula only, June - July) was used to induce remission in him and has been used as a maintenance treatment (1/2 dose of formula plus all foods, no meds) since then. However, his two previous blood tests have shown gradually increasing inflammation markers. At his apptmt last week, tests were rerun and his GI is suggesting that he may have to repeat the 6 week exclusive period and then begin methotrexate. Haven't heard back from hospital yet, so not really sure where we stand.

Not sure what the benefits or side effects are of azathioprine vs. methotrexate??? Or why one would be suggested opposed to the other??

There is a subforum under Treatment for azathioprine: tp://www.crohnsforum.com/forumdisplay.php?f=64

Good luck, let us know how it goes for your son.
02-01-2012, 02:41 PM   #77
zipster1
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Don't think he could do another round of modulen and aftr the last time i don't think i could either!:-P:-)
Thx again guys for all the help. This site has been a true godsend to me and mine!;-)
02-01-2012, 03:33 PM   #78
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It certainly sounds like they are trying to nip in the bud before he does flare. Azathioprine is used as a maintenance medication and I would think they have suggested it to you now as it does take at least three months to become fully therapeutic. If you do go down this path ensure they do a TPMT test first, that will indicate if your boy has the enzyme necessary to break down the drug by the liver. Also ensure they do regular blood tests, starting out weekly for a month or two, then forthnightly for a couple months, then monthly, eventually they pan out to 3 monthly but don't leave it any longer than that.

Both of my children are on Azathioprine as a maintenance med following surgery. Neither have had side effects and both are in remission.

Does your son have Crohn's in his ileum (small bowel)? If so has he had bloods done for B12, Iron Stores, Folate and Vitamin D?

Dusty. xxx
02-03-2012, 04:10 PM   #79
zipster1
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Small bowel dusty.
Picked up his tabs today. 75mg for 7 days then one 50mg tab 3 times daily.
Trying to get his head round it right now.:-(
02-03-2012, 04:49 PM   #80
DustyKat
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Okay, I would have the blood tests for B12, Iron Stores, Folate and Vitamin done when he next has bloods drawn.

Hmmm, that seems a odd regime. How much does your son weigh?

I understand mate...

Dusty. xxx
02-03-2012, 06:13 PM   #81
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Not sure of weight dusty. Average for a 14 yr old i suppose, 10-11st'ish!
Why an odd regime?
02-03-2012, 06:34 PM   #82
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Well that would fit with the 150mg then. Imuran is normally calculated at 2-2.5mg per kilo.

They would normally start you at 50mg and see if you tolerate it okay but I guess half dose wouldn't make that much difference. Then you take the full amount as a single. My children have had no issue with it but quite a few people here take it before bed as it causes them some nausea, that way they sleep through it.

Dusty. xxx
02-03-2012, 06:58 PM   #83
zipster1
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Thx for clearing that up dusty. For sec there i was worried. I have a work-mate who's son has had crohns for good few years but his wife is the one who deals with all the hosp and stuff. When i mentioned aza the first thing he did was call her on his mobile then hand it to me!:-)
I now have my very own live helpline according to peter's wife. She said anytime i feel need to talk/ask questions etc feel free. Good thing for me is i also hav u guys for my latenite queries!!:-P;-)
As i have said in numerous posts b4 this THANK YOU ALL for your support, help and shoulders to lean on in these last 5 mths! ;-)
02-03-2012, 07:10 PM   #84
DustyKat
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Vey bad form on my part! Sorry about that.

That is great that you have that support!

I hope all goes well for your boy. Keep us posted on how he goes with the Aza. Good luck!

Dusty. xxx
02-04-2012, 08:55 AM   #85
zipster1
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Been corrected by my wife.
It's not 50mg 3 times a day it's 3x50mg all at once so you were right about that dusty. ;-):-P
02-05-2012, 06:12 AM   #86
Dexky
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you were right about that dusty. ;-):-P
Hmmmph, go figure!
02-24-2012, 02:28 AM   #87
zipster1
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Bloods coming back looking ok. 150mg aza for the forseeable so fingers crossed!:-P
I know i keep saying it but you guys have been the voice of reason in an otherwise CRAZY world! ;-);-)
02-24-2012, 02:34 AM   #88
DustyKat
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Fingers and everything else are crossed!

Thanks for the update zipster, it's so fab to hear all is going well and long may it continue that way!...

Dusty. xxx
04-03-2012, 01:47 PM   #89
zipster1
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Wee update.
son has started getting a rash on his hands. Doctor has put this down to his aza and says he is poss photo-sensitive. Now prescribed hydrocortison cream snd a 50+ factor suncream. We have been in contact with IBD nurse and she says doc looks as tho he has hamdle on it!
Anyone heard of this? Found post on the aza forum and hav posted there too.
thx in advance
04-04-2012, 08:01 AM   #90
DustyKat
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Hey zipster,

My two haven't had issues with rashes and Aza but I have read of others here that have developed rashes when exposed to the sun. Certainly photosensitivity can be a side effect and the doc may well be on the right track. If so the treatment makes sense.

Good luck and let us know how he gets on.

Dusty. xxx
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