Another little update

[Floridatilly]

I just thought I would post another update on Mason, my brave little man 💪🏻
Appointments and getting information is so difficult at the moment. All appointments have been cancelled because Alder Hey childrens hospital have adult patients due covid and over run regular hospital.
We got a call to say we had to collect a prescription up from Alder Hey for Azathioprine to start immediately and to have an x ray whilst there and told that he MUST have weekly blood tests for 4 weeks then every two weeks then monthly, eventually moving to every 3 months if everything is ok. I queried when and where he would get these bloods done and told he would get back to me.
We was originally told that by his consultant that he would see Mason a week before his modulen feeds finish so that he could assess if he needed an extra two weeks on the feed and what medication to start and when. Mason would also have a MRI scan before starting this medication.
Non of this has happened. We had another phone call on to say he should start the weaning process off the modulen this coming Friday and they emailed us the instructions, amount of food v amount of feeds over a 14 day period.
When we collected the prescription up from adler hey the pharmacist was reluctant because our lack of information we had been given and the fact that Mason had not been seen. She actually told is to contact PALS. She stressed the importance of the blood tests and the MRI scan so rang the IBD team up herself and they told her that they would instruct our local GP to do the blood tests and they will try to organise a MRI scan.
Roll on a couple of hours and my doctors ring saying Alder Hey are demanding these blood tests but they do not do blood tests at our surgery. So now I have to chase up where and when he will get these blood tests.
We haven’t been given any proper information regarding this immune suppressant drug apart from a leaflet that was given us with loads of warnings on it.
I understand the NHS is overwhelmed at the moment so I am trying to not be frustrated but the lack of communication is shocking, its us chasing them constantly.
I have not been a happy bunny today but at least Mason is a little trooper 👍🏻
I am dreading the blood tests because he gets totally hysterical, kicking, punching and screaming. This is due to a very bad experience last year 😓

[Floridatilly]

Just to add, we wouldn’t get in touch with PALS, complain etc. The NHS is so stretched at the moment without me moaning 🙈

[Stitch & Smudge]

Chase everything and everyone. Yes, the nhs is under pressure but so are you. Your family is your priority, do everything you can for it. Others won’t think twice about it. Sending love and wishes.

[duchy]

PALs aren’t just there to be complained to , they can also be a conduit to highlighting communication issues between departments which is probably why the pharmacist suggested it if they are seeing this too often.

[Talland 2016]

PALS may be able to help with the liaising of information as to what service is to do what with the planned treatment for Mason.
They don’t only deal with complaints but can help to get the information that you need so it may want to contact them for the liaison part they can offer

I think Duchy and I must have been replying at the same time

[Disney_time]

Time to make a friend of the consultant's PA. Keep phoning them and specifically ask that messages are passed to the consultant about not being able to get a plan for blood tests, and more importantly who reviews the result and how and when you will receive each result (in case of needing a dose adjustment) Is there an IBD nurse specialist? At the very least your DS needs a telephone or video consultation before starting azathioprine.

Bless him. He is putting up with such a lot.

[meboo]

Please get in touch with PALS. You could even say you don’t wish to make a formal complaint but you need help to sort out the conflicting messages. They are there to help you navigate the complications and liaise with various departments for you do you get one straight answer. I’m amazed your Gp doesn’t do bloods ! What would happen if you needed a blood test ? When my DD was on immunosuppressant we could choose to go to children’s hospital or GP for bloods. I’d have to phone the results from the surgery to to specialist nurse at the hospital / the Gp nurse literally just had to take the bloods and provide me with the results. The hospital specified which results they needed. My DD’s drug could have affected her liver and it is a condition of having it that the regular bloods get done. Like yours they became less frequent once the consultant was happy that it appeared her body could cope with the drug but she still needed monthly testing. You’re going an amazing job in a tricky time, but don’t feel you should have to sort medical things out that you have been told Mason needs.

[Bootrip2]

Do you have email address of the supervising consultant? Or paediatrician? It doesnt seem very good to have left you with so little information when you are mid way through treatment plan. Im not sure how it works with kids but usually adults are on a shared care agreement with a GP/hospital of meds need regular blood tests.
Do you have support of a nurse team at all?

[EssexSue]

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

[jobelly]

I’m so sorry to read all this, obviously a lot has happened since the last time we spoke. You and Mason are having an awful time of it and I hope it gets better soon.