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Old 25 Jan 21, 08:40 PM  
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#11
Lindsaymc
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I was started on Azathioprine last year and had to have regular blood tests. I was also told that if I got a sore throat I should stop taking them immediately and contact my consultant.
I would definitely contact either the secretary or PALS. He needs to be monitored closely.
I’m a nurse so I understand the pressures the NHS are under but I have been seen 4 weekly throughout the pandemic (I was diagnosed the day the first lockdown started) and my issues are nowhere near as bad as your sons.
I really hope you get the answers you need.
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Old 25 Jan 21, 09:08 PM  
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Bootrip2
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Also will he have a regular MRI or need one under sedation? If under sedation there is sometimes a bit of a wait.
I hope you get some answers that you need. It must all be very unsettling. X
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Old 25 Jan 21, 09:28 PM  
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Talland 2016
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Originally Posted by EssexSue View Post
We can get blood test appointments if we go on line, I'm amazed Alderhey aren't doing them, or your local hospital.
I thought how well Mason was looking, probably because his lips are normal now, he really is a little sweetie.

Regarding his needle phobia we had the same with our granddaughter but she did get over it, well she had to really. Children's hospitals do generally have a needle specialist, I think poor Mason is missing out on the special treatment he should be getting due to Covid. X
Not all GP surgeries have nurses/ phlebotomist trained to take blood samples from children unfortunately
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Old 25 Jan 21, 10:10 PM  
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Thank you so much 😊 I honestly thought PALS was a complaint department but it actually sounds perfect.
I have such conflicting emotions at the moment, I am so frustrated and disappointed with the communication and care but on the other hand I feel guilty for feeling frustrated because of how difficult it is for the NHS at the moment.

We have emailed his consultants secretary so hopefully she will get back to me. We spoke to the IBD nurse assigned to Mason but he is working from home so can’t see Mason.
He was supposed to be visited by the district nurse last week as the tube was supposed to be changed after 4 weeks but I had to chase that up, then was told it would be fine for the whole 8 weeks. I actually messaged a lovely dibber who deals with these feeding tubes because we was so concerned and she kindly assured me that it was ok.
So I got more information from a kind dibber than his actual consultant/team 🙈
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Old 25 Jan 21, 10:16 PM  
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Floridatilly
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Originally Posted by Lindsaymc View Post
I was started on Azathioprine last year and had to have regular blood tests. I was also told that if I got a sore throat I should stop taking them immediately and contact my consultant.
I would definitely contact either the secretary or PALS. He needs to be monitored closely.
I’m a nurse so I understand the pressures the NHS are under but I have been seen 4 weekly throughout the pandemic (I was diagnosed the day the first lockdown started) and my issues are nowhere near as bad as your sons.
I really hope you get the answers you need.
They haven’t mentioned anything about the Azathioprine. We have just been told he needs to take it. No pro’s and con’s, no signs to look out for like a sore throat etc
The only information on this medication is a warning leaflet warning of risk of cancer, liver failure, kidney failure... basically scary stuff.
I am assuming these are very rare 🤞🏻
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Old 25 Jan 21, 10:22 PM  
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Bootrip2
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You really shouldnt have just been left like this, let alone in middle of a pandemic. I would makes notes of who i have spoken to, when, and what the outcome was.
Good luck going forward. Our childrens Outpatient dept is great getting bloods from kids. DD used to have weekly bloods, usually collected by nurses visiting the house.
DD due to have MRI with contrast next week and so will need a cannula, but she knows all the nurses and luckily trusts them. I’m sure your son will soon be like this too, especially when he gets familiar with who takes his blood. You will soon be an expert on his veins, best ones to use etc, and get handy with the magic cream. X
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Old 25 Jan 21, 10:29 PM  
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Floridatilly
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Originally Posted by EssexSue View Post
We can get blood test appointments if we go on line, I'm amazed Alderhey aren't doing them, or your local hospital.
I thought how well Mason was looking, probably because his lips are normal now, he really is a little sweetie.

Regarding his needle phobia we had the same with our granddaughter but she did get over it, well she had to really. Children's hospitals do generally have a needle specialist, I think poor Mason is missing out on the special treatment he should be getting due to Covid. X
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.
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Old 25 Jan 21, 10:29 PM  
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Just sending a big hug to you and to Mason, thanks for the update he is such a brave boy x
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Old 25 Jan 21, 10:33 PM  
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Floridatilly
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Originally Posted by Bootrip2 View Post
You really shouldnt have just been left like this, let alone in middle of a pandemic. I would makes notes of who i have spoken to, when, and what the outcome was.
Good luck going forward. Our childrens Outpatient dept is great getting bloods from kids. DD used to have weekly bloods, usually collected by nurses visiting the house.
DD due to have MRI with contrast next week and so will need a cannula, but she knows all the nurses and luckily trusts them. I’m sure your son will soon be like this too, especially when he gets familiar with who takes his blood. You will soon be an expert on his veins, best ones to use etc, and get handy with the magic cream. X
I hope she is ok next week x x x
Can I ask what an MRI with contrast is? I don’t know anything about MRI scans really, I assume its like an x ray?
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Old 25 Jan 21, 11:15 PM  
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Bootrip2
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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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