Another little update

[Floridatilly]

Originally Posted by Bootrip2

The contrast is a dye injected into her while she has her scan so it highlights, she has scans of her head and back every six months, takes 1-2 hours. It depends on what they are scanning and looking for.
The scans are quite noisy but DD hates having anaesthetic she knows she has to lay still.

Mason will surprise you, as he already has done, as i suppose it is a long term condition he has he will learn to live with it, DD hasnt known anything different, she has had scans since ahe was 1, and is now 11. She has MRIs like most of is have dentist appointments!

Although probably at home at moment, keep school informed too so any thing he needs care wise will be in place for when they fo eventually return to school. X

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Oh my word, bless her, she sounds like a very brave little girl! 🥰

[wdw-wanderer]

A tip I was given for full body MRI scans was to keep eyes closed all the time. If you have any eye masks left over from a Florida trip they might come in useful?

[babbymint]

My son has had many MRIs and also has an issue with cannulas after a bad experience. Hospitals who deal with lots of children are, in my experience, very good at putting kids at ease. Some have a mirror fitting over the head part which looks at a tv screen and they can watch a dvd while in the tube. Or they can have music piped through headphones. You’re allowed in with them and my son likes his leg being stroked. Definitely recommend the magic cream if you haven’t used it before (not sure if it helps really) but the thought of the procedure is usually worse than the reality and the magic cream helps that. You can buy it in a pharmacy, or ask the hospital in advance for some they may let you have it. Apply 40 minutes beforehand…

[TheHughesCrew]

Aaaaargh, just lost a huge long reply 😭

I would go back to the original person who gave the instruction for the new drugs. And try and unpick things from there. Maybe the IBD team can help? And please don't worry about chasing things. Sometimes 1 department will just assume that another department has given you the information for something. Pls do contact PALS, they will help you to piece everything together (and generally have more direct phone numbers than you have!). Don't start anything until you have a firm plan, and you're happy with that plan.

I'm glad Mason has improved so much. It's great to hear he's doing well. Hope he continues to improve xx He WILL get used to the blood tests I'm sure... xx

[returnplanning]

I work in a speciality that prescribes drugs like azathioprine that require regular blood test monitoring. I'm also in one of the UK hotspots (last week we had one of the highest bed occupancies with COVID nationally) - I'm only mentioning that to put it into perspective.

We are still continuing blood tests - the hospital is open, and there were (at least a couple of weeks ago from what patients said community places, but at no time has the hospital stopped doing blood tests for important bloods (rather than the "let's get your cholesterol checked" more routine types of bloods).


Our blood test forms have telephone number and website addresses on for patients to book tests.

As a hospital dr, I would also say that the IBD team at the hospital "ordering the GP to do the bloods" is not very helpful. If the GP surgery doesn't do bloods at the moment, or doesn't do children's bloods, the hospital can order what they like, it won't happen. It's not helpful for anyone involved - you are feeling stuck and adrift, the GP surgery is no doubt feeling stressed and potentially even expecting a complaint (that would be easily batted back, but still takes time to deal with).

There are ways around it - you may need to go to the hospital for bloods, or your IBD team can make some arrangement with your local hospital if Alder Hey are not your local hospital.


I agree that PALS is a sensible suggestion, and not just for complaints, but they can guide people through the processes and will contact the relevant people to answer your queries.


Your GP surgery may know what arrangements have been made locally to continue clinically urgent blood tests, so it is worth asking them this.

Hopefully you can get it sorted soon - it is possible for drugs like this to be started and monitored during a pandemic - my dept have been doing this.

[Floridatilly]

The post has just arrived and added to my frustration. A 10 page information pack on infliximab has arrived. No cover letter, nothing. Its never been mentioned to us or anything. So I have emailed his consultants secretary and left a message on the IBD teams answering machine.

[Floridatilly]

I do not know how to link numerous posts together. But I have read each reply carefully and taken all advice on board! I can not thank you all enough for the advice, help and support. I am blown away by members of the dibb 💗 thank you all so much x x

[Lily8]

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.

[Bootrip2]

Crikey they really are bombarding you with part-information, Azathioprine and Infliximab are both very strong drugs, usually under consultant care - definetly get hold of PaLS , you need it sorting out, especially if friday you were meant to change/commence second stage of treatment. Xxx

[JessBlu]

Can you afford to go private?
I think that’s the route I would be investigating.