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09-09-2011, 08:01 AM   #31
Tesscorm
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Great news!!! So glad the Modulen is working for him.
09-09-2011, 10:11 AM   #32
zipster1
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Question?
Any of you guys heard of a drug called AZITHROMYCIN being used as a protocol for crohns?
reason i ask is yorkhill hosp phoned today saying the docs were cinsidering this for Andy ( my son)
As usual any pointers most gratefully appreciated. ;-)
09-09-2011, 10:11 AM   #33
MumofOli
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That is fantastic news!

Well done
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Dx Crohns March 2011

Infliximab Infusion every 8 weeks since July 2013
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Cannot tolerate Azathriopine (Imuran)

09-09-2011, 10:17 AM   #34
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Do you mean Azathriopine?

It's used quite regularly with very good results but unfortunately my son couldn't tolerate it.

There is some excellent information on this forum about this drug?

Bet wishes

Treena x
09-09-2011, 04:57 PM   #35
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Both of my children are on Azathioprine (Imuran). You will also see 6mp in a lot of peoples signatures and this is a very similar drug.

They are called immunosuppressants and like most of the drugs used to treat IBD they list some pretty hairy side effects but scariest ones are also the rarest.

I guess what the doctors are doing is trying to get him into remission via the elemental diet and then maintain remission with medication. If he does go that path they should do what is called a TPMT test and that will determine if he has the enzyme in his liver that is needed to break the Azathioprine down. If he does then his chances of having serious side effects are significantly reduced. Of he doesn't have the enzyme or have it in sufficient quantities they may not use the drug.

If and when it is prescribed he will have regular blood tests to particularly monitor his white cell count and liver function. Any abnormalities in these will flag to the docs that there may be a problem. The blood tests are normally done weekly to start with but over time should pan out to 3 monthly.

Sarah has been on Azathioprine for 5 years now, she is in remission and has had no problems with the drug. Matt has been on it since last December and he is now in remission, following surgery, and has also had no problems with it.

Dusty. xxx
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09-10-2011, 05:17 AM   #36
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There is Azithromycin too. I googled it. It's an anti-biotic sometimes used to treat H. Pylori so I suppose it is possible.
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09-10-2011, 07:41 AM   #37
zipster1
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Thx guys. aftr listn to the answer machine again have worked out that it is Azathioprine so you guys called it right!:-P;-)

Last edited by zipster1; 09-10-2011 at 11:16 AM.
09-10-2011, 04:19 PM   #38
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That's great that he is feeling so much better! Always nice to hear that things are going well.
09-10-2011, 09:41 PM   #39
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I had to go on a 8 week diet of Modulen when I was 14 and I found it easier to drink when it was really cold.My dad tried making ice lollies for me but it was a bit weird...
09-11-2011, 10:54 AM   #40
zipster1
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Put that option to my son too and his reaction was the same!:-)
Sent an e-mail to the IBD nurse/dietician to see if poss to use bottled water rather than having to use boiled water cooled. Will make going away easier as can make the doses up as we need them.
09-11-2011, 12:10 PM   #41
dodie74
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Hi zipster1, my son whos 8 was diagnosed last year with crohns and was put straight on 6mp( after tests to see if he was a good candidate for it) and salofalk, i think azathioprine is the same family as 6mp, immunosuppresants. I was absolutely devastated when he was put on it as the side effects i read just made me cry for days so i called his ibd nurse n she reassured me that the benefits outweigh the risks and she was spot on. touch wood,so far Kian is responding well and his bloods are all good, he is now down to monthly bloods which is good. I see you attend yorkhill with your wee boy, thats where we go also, they have a fab team in there eh. Hope yr son is doing well, take care. xx
09-11-2011, 02:25 PM   #42
zipster1
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Dodie74 thx for your advice and kind words. I think the team @ yorkhill are top quality @ what they do and seem to understand the "BIG WEANS" like me too!!:-P:-):-)
09-11-2011, 06:57 PM   #43
Cinny
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Put that option to my son too and his reaction was the same!:-)
Sent an e-mail to the IBD nurse/dietician to see if poss to use bottled water rather than having to use boiled water cooled. Will make going away easier as can make the doses up as we need them.
I think you cant use normal bottled water.My dietician gave us boxes of litre bottles of hospital water that can be used.Oh yeh also when I went to school I took my modulen in a flask to try and keep it cool.
09-12-2011, 12:47 AM   #44
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Thx Cinny will run that one by the hosp if bottled water(normal) a no-go.;-)
09-12-2011, 03:57 AM   #45
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Lol youre so right Zipster1, i think us parents get ouselves into a worse state than the kids as they just take it in their stride!! how often do you attend yorkhill with your wee man? we are 6monthly at the min so back up december again. keep us posted how the wee fella gettin on, take care. xx
09-12-2011, 08:45 PM   #46
zipster1
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We are bak then start of october which will be end of the 8wk modulen. Then maybe it will be less frquent.Touch wood. thx again for your good thots!;-)
09-13-2011, 05:53 PM   #47
zipster1
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Word back from hosp re: bottled water. you can use it but it doesn't mix as well as cooled boiled water with the modulen!o_Oi
Trip away may be off anyway as weefella havn doubts about enjoying himself but not being able to eat!:-(:-(
09-17-2011, 08:13 AM   #48
zipster1
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I AM SO PROUD OF MY SON!
My son was out with friends lastnight and due to the modulen diet he had to take one dose with him!:-( I have just literally finished having a conversation with about his nite and turns out they all went to McD's and whilst his friends were all munching on stuff he sat and drank his modulen! :-( I have just realised that he's going to be fine whatever comes his way! ;-):-):-) Must get the steel from his mum bcoz i would've folded ny now!!:-P:-):-)
09-17-2011, 08:38 AM   #49
DustyKat
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Woohoo!!! Kudos to your boy!!!

Dusty. xxx
09-17-2011, 04:28 PM   #50
Tesscorm
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Don't they surprise you??? Amazing how strong they are!

There have been a number of occasions since my son's diagnosis that I've swelled with pride at his actions. After all the worry, concern and heartbreak that comes with the diagnosis, these moments mean so very much!
09-17-2011, 06:23 PM   #51
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Ditto Tess! Well said...

Dusty. xxx
09-24-2011, 02:16 PM   #52
zipster1
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Anyone give me an idea on why my son's been asked to go for DEXA scan?
09-24-2011, 03:47 PM   #53
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I guess most folks on here would go for a DEXA scan due to them having been on Prednisone but since your son hasn't been on any steroids it wouldn't be to test his bone density for this reason.

In paediatrics it can be used for other reasons and I can think of two that may be using it for. They may want to gauge his bone density to see if he has suffered any loss from the malabsorption that frequently accompanies CD or they may want to see what effect the elemental nutrition has had on maintaining the skeletal system and his body fat composition. Just my guesses though!

Let us know what you find out.

Dusty. xxx
09-24-2011, 04:46 PM   #54
zipster1
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Thx dusty.;-)
Googled it and all i saw was osteoperosis and then i thot why not ask guys who are in my sons position or have been!
we go to yorkhill on 3rd october so will update afyer.
09-24-2011, 08:14 PM   #55
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Hi Zipster, after my son was on the enteral formula for a month, he was sent for wrist and spine x-rays (but, not DEXA). The doctor explained that it would be compared typical growth charts of other boys his age to determine if his growth had been affected by the Crohns. (Spine x-ray was partly due to recurring back pains but the wrist was specifically for comparison reasons.)
10-04-2011, 12:06 AM   #56
zipster1
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Update.had dexa scan ystdy and then had appntmnt
@ clinic. startn to phase out the modulen from nxt saturday but will be while b4 modulen completely finished tho. re-introduction of foods will commence @ same time. Hosp very pleased with how my son has progressed and we go back in 3 mnth when it will be decided if they will start him on Aza depending on how his bloods wrk out. :-):-):-)
10-04-2011, 12:39 AM   #57
DustyKat
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Thanks for the update zipster!

So happy to hear that things are progressing well, YAY!


Dusty. xxx
10-04-2011, 04:12 AM   #58
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hi zipster1, my son also had the dexa scan at yorkhill not long after he was diagnosed, pleased to say his results were normal. He has never been on steroids but i presume its a routine test they do to check bone growth for their age. hopr yr appointment at yorkhill went well, we are back on 5th of december for ours. xx
10-04-2011, 07:49 AM   #59
zipster1
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Thx dodie74!;-)
here's hoping everythn goes this well gor both our kids from here on in!;-)

scrap that last line. change it to for All Our Kids from here on!:-)
10-16-2011, 11:34 AM   #60
zipster1
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One wk on from modulen faze out/ reintroduction of food. So far so good!;-)
He had mc d ystdy and in his words " MAGIC". Down to 2x200ml each day for as long as he feels he is able to do it.
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