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Old 26 Jan 21, 12:17 PM  
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Originally Posted by Lily8 View Post
I don't want to alarm you but if he does begin treatment with azathioprine, please also watch out for any 'new' upper abdominal pain. Appx 2% of patients will experience pancreatitis as a side effect and unfortunately I was one of them. In suspected cases of pancreatitis it's important to test for both elevated amylase and lipase as the former may not stay elevated for long.

I've also been treated with Infliximab for a while. It was nothing short than a miracle treatment for me (until it stopped working quite as well). There's quite an arsenal of treatments now for IBD so hopefully one of those proves right for Mason!

As for bloods, I think most phlebotomy clinics don't do bloods for under 16 so it's really best if you can ask the IBD team to order the bloods to be done at Alder Hey.

Stay positive and keep doing your best to ask lots of questions and challenge the system if you feel your boy's medical care is falling short of reasonable standard and expectations.
I have just read the ten page information pack on infliximab and I am quite honestly in a panic, my chest feels like it’s going to explode.
Surely this medication is only if the Azathioprine doesn’t work? He won’t have them both? No one has mentioned infusions or anything, I have never heard of this drug. I was told that if the Azathioprine wasn’t suitable he would go on mercaptopurine. I am so confused.
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Old 26 Jan 21, 12:19 PM  
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Originally Posted by Lily8 View Post
I don't want to alarm you but if he does begin treatment with azathioprine, please also watch out for any 'new' upper abdominal pain. Appx 2% of patients will experience pancreatitis as a side effect and unfortunately I was one of them. In suspected cases of pancreatitis it's important to test for both elevated amylase and lipase as the former may not stay elevated for long.

I've also been treated with Infliximab for a while. It was nothing short than a miracle treatment for me (until it stopped working quite as well). There's quite an arsenal of treatments now for IBD so hopefully one of those proves right for Mason!

As for bloods, I think most phlebotomy clinics don't do bloods for under 16 so it's really best if you can ask the IBD team to order the bloods to be done at Alder Hey.

Stay positive and keep doing your best to ask lots of questions and challenge the system if you feel your boy's medical care is falling short of reasonable standard and expectations.
They haven’t said to look out for anything. I feel like I am at my wits end this morning. If there is anything else I should watch out for?
Thank you x
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Old 26 Jan 21, 12:22 PM  
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Originally Posted by JessBlu View Post
Can you afford to go private?
I think that’s the route I would be investigating.
We did look into this in November but was told that only his initial appointment would be quicker because a lot of private hospitals are being used to operate etc on NHS staff to help the load of covid. This was a constant in Manchester that also works at Manchester children’s hospital where my niece works.
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Old 26 Jan 21, 12:30 PM  
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Originally Posted by Floridatilly View Post
I have just read the ten page information pack on infliximab and I am quite honestly in a panic, my chest feels like it’s going to explode.
Surely this medication is only if the Azathioprine doesn’t work? He won’t have them both? No one has mentioned infusions or anything, I have never heard of this drug. I was told that if the Azathioprine wasn’t suitable he would go on mercaptopurine. I am so confused.
Please don't panic. Infliximab is administered via an infusion, on a slow drip, at regular intervals. This is done on an outpatient basis at hospital. I know the leaflets and the long list of potential side effects are super scary but I can honestly say, from personal experience, that this treatment can be life changing. It may well be the case that they are just introducing you to some of the possible treatments, that Mason may - or may not - need down the line.


Originally Posted by Floridatilly View Post
They haven’t said to look out for anything. I feel like I am at my wits end this morning. If there is anything else I should watch out for?
Thank you x
That's all I can think of but as you already know he will need regular blood tests to spot any issues. I know many people for whom Azathioprine worked very well, keeping them in years-long remission, with little or no side effects. Mason could well be one of them!
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Old 26 Jan 21, 01:12 PM  
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Extra prayers for your brave little man from now until he is fully recovered,I cannot say I know how you feel,nobody knows what you're going through,but have faith.May God bless you both.
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Old 26 Jan 21, 01:19 PM  
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It’s a lot to take on board and you need to speak to someone professional before you can do anything. There must be something you can do, sending love to you and Mason and hope you get it all sorted and get some answers xx
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Old 26 Jan 21, 01:24 PM  
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Originally Posted by Floridatilly View Post
Alder Hey will do them but would rather not 🤷 So instructed our GP to do them, my GP was not happy with the email they received. If I get no joy at our local health centre tomorrow we will have to go to Alder Hey. Unfortunately Mason, like your granddaughter, will have to get used to the blood tests even if it costs us lots of new lego sets 👍🏻👍🏻
Mason does look great bless him, looking at him you would never know what’s going on inside. He gets wiped out really easily but it’s early days yet I suppose.
Hi FT, I was just looking at the Linacre Centre website as my dd needs a blood test and noticed this
"Please also note that we do not take blood from children under the age of 12. Appointments for children under the age of 12 are available by ringing Platt Bridge Paediatric Clinic on 01942 481345 or 01942 481151."
You will probably be able to get Mason tested there rather than travelling all the way back to Alder Hey xx
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Old 26 Jan 21, 02:56 PM  
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Originally Posted by marypoppins38 View Post
Hi FT, I was just looking at the Linacre Centre website as my dd needs a blood test and noticed this
"Please also note that we do not take blood from children under the age of 12. Appointments for children under the age of 12 are available by ringing Platt Bridge Paediatric Clinic on 01942 481345 or 01942 481151."
You will probably be able to get Mason tested there rather than travelling all the way back to Alder Hey xx
Thank you, that would certainly be a lot closer 🤞🏻 We don’t mind the travel if needed but Mason doesn’t like the 2 hour round trip 😬
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Old 26 Jan 21, 03:01 PM  
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The IBD guy has just returned my call (and email) I don’t think he is very happy with me and all my questions 😓
He said that Mason’s consultant told him to send me the information pack. He said it could be in case the Azathioprine doesn’t agree with Mason or it could be used as well as the Azathioprine. He stated that he and his colleague have over 400 patients to deal with so unfortunately Mason is not the number 1 concern.
I feel like I have been told off. I don’t mean to pester I am just worried.
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Old 26 Jan 21, 03:23 PM  
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Originally Posted by Floridatilly View Post
The IBD guy has just returned my call (and email) I don’t think he is very happy with me and all my questions 😓
He said that Mason’s consultant told him to send me the information pack. He said it could be in case the Azathioprine doesn’t agree with Mason or it could be used as well as the Azathioprine. He stated that he and his colleague have over 400 patients to deal with so unfortunately Mason is not the number 1 concern.
I feel like I have been told off. I don’t mean to pester I am just worried.
Mehh ignore his attitude, did you get the answers you needed? Incidentally I once saw the same consultant privately as I had previously seen at a NHS clinic Iand I had to check it was the same bloke he was so different.

Edited at 03:25 PM.
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