My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Children's health

Please please help with my son's never-ending illness

368 replies

Twunk · 25/07/2013 10:47

I honestly think I am losing the plot. Sad

Brief synopsis

DS2 has just turned 4. He was premature and had all sorts of issues in the first 6 months but has been healthy since then. He was breast fed until he was 3 and had normal run of short illnesses.

June 10th he developed a fever. His throat hurt and muscles ached. The fever lasted about 5 days. He recovered but looked pale and tired.

A week and a half later it came back - much worse. I took him to the doctor because he had a lot of pain in his legs and couldn't walk/stand. He had blood tests and I was called and told to take him to hospital, they thought he had leukaemia. Thankfully after a couple of retests they concluded it wasn't. He got better and started walking after 5-7 days.

One week later he got the fever again, but this lasted 48 hours.

Another week and he got it again. Stopped walking and hasn't done since. He fever lasted about 24 hours. This was the weekend before last. However, he's looked much better and been laughing and playing and crawling about. Eating normally too.

This morning he has another fever. I've made an appointment at the doctor but I am just at my wits' end.

His blood tests showed that it is probably a virus. He's anaemic (blood iron fine). Anyone had/heard of this? Please help I'm close to going crazy.

Thanks

OP posts:
Report
Sparklyfeet · 29/07/2013 11:31

Thinking of you today Twunk and hope the move to the new hospital goes ok. Lots of love x

Report
Cerisier · 29/07/2013 12:32

Thinking of you, Alex and DH and hoping that today goes ok. Sending big hugs over the miles.

Report
Twunk · 29/07/2013 13:13

We're here and it's a great place. Ou room is small but it's fine. There's a Ronald McDonald house should we need it. DS1 is extremely taken with the fabulous rooftop playground and there is a Ronald McDonald House should we need it.

It took my DH, 3 nurses and 3 doctors (2 residents and 1 consultant) to get a canula in - and they put it in his foot in the end Sad so he can't walk again.

Just waiting for blood results and then we're promised explanations etc.

€12 a day for parking, robbing bastards.

OP posts:
Report
Twunk · 29/07/2013 13:13

Repeating myself a bit there

OP posts:
Report
takeaway2 · 29/07/2013 13:24

oh... that description brought back horrible memories of canulas.... :( poor Alex. There's 'magic cream' that helps in numbing the spot where they stick the needle in - have they got that?
www.emla.co.uk/

do they also have weekly parking charges? the parking where we are is horrendous but they have a weekly pass which actually is the same price as a day's parking! you need to get it swapped at reception or something. do ask!

big hugs...

Report
Pozzled · 29/07/2013 13:30

Glad to hear the place is ok, it must have been quite nerve-wracking waiting to transfer there. Still thinking of you all. I hope the test results come through quickly and that you have a chance to go through all your questions and worries with the doctors.

I can't begin to imagine what you're going through, but I remember when DD1 was admitted to hospital as a toddler. It was the waiting around and not really knowing what was happening that was hard to deal with.

Report
Twunk · 29/07/2013 14:29

They said "oh the cardiologist is ready to see him now" and I thought "wtf?!"

Perhaps they should have pointed out it was routine first...

He's on the emergency list for tomorrow which means I cannot plan for when he's going in to theatre.

Still waiting for results.

OP posts:
Report
Twunk · 29/07/2013 14:31

No discount on parking available. Apparently I can move the car to a nearby road once it's evening and leave it there for free.... except my husband is taking it back with him of course.

OP posts:
Report
MsGee · 29/07/2013 14:42

Hi Twunk tis the lady from the other place, stalking you here as promised Grin.

I am so glad you posted on here, some fantastic advice and support. Alex is an amazing boy and as people have said, you both have strength and resilience that you would never imagine. Two weeks ago you could not have imagined still coping with all you've endured this last few days and yet here you are, still going.

Anyway big love from the Gee lot to you and your boys xxx

Report
idiot55 · 29/07/2013 14:45

Thinking of you today, glad you are settled in the new hospital.

Report
Twunk · 29/07/2013 15:02

Aaaaaargh not the Gee woman!

Takeaway - they put something on his skin before the injection but I don't know what. I shall ask.

OP posts:
Report
Twunk · 29/07/2013 15:03

Thanks idiot (that seems rude).

OP posts:
Report
Jemma1111 · 29/07/2013 15:21

Twunk

I'm another who is thinking of you all , Alex sounds a lovely little boy and I wish him all the very best x

Report
MsGee · 29/07/2013 16:00

Twunk I quite like that I am coming to you in stereo with various social media.

Anyway, fingers crossed that the test results are as positive as possible xxx

Report
MrsDeVere · 29/07/2013 16:04

This reply has been deleted

Message withdrawn at poster's request.

Twunk · 29/07/2013 20:09

They've apologized for the oversight.

He's scheduled for the bone marrow removal and lumbar puncture tomorrow. I say scheduled, what I meant was that he is on the emergency list so could be any time from noon.

The doctor is 99% sure it is ALL. I astounded myself, much like I did when he was 4 days old and was on a ventilator and had had seizures, how many questions I asked and how much I took in. Doctor seemed impressed with my knowledge - I've been careful what I look at but obviously I've been reading up. It's better really because their english sometimes needs help.

I'm starting to get used to the "new normal" and am quite comfy in our new room. Alex is sleeping and I am delighted because we have BBC1 and BBC2! Yay.

I even managed to eat most of a meal for the first time since Thursday.

The lovely MissGee has found an English charity in the Netherlands who will help with all this and can even help provide counseling if needed. It's nice to know there are people I can call for advice.

OP posts:
Report
Twunk · 29/07/2013 20:10

MsGee, sorry Blush

OP posts:
Report
MsGee · 29/07/2013 20:18

Good to hear that you have started to eat something - you need to keep your physical health up too. And glad to hear that the new normal is becoming normal. Def try to contact the charity when the time is right.

MissGee ... sounds far too youthful for me, unless its MissGee in a MissHaversham sort of way?

Report
takeaway2 · 29/07/2013 20:18

Oh Twunk, how quickly a new normal set in. hugs

The bone marrow thing,they'll put him under with GA which means no food from now or breakfast time.. And given that its anytime past noon, do be prepared with tantrums when lunch time comes and goes and he doesn't get to eat. Mine totally freaked when he didn't get lunch and well, he was most unimpressed when I told him we were playing a new game of not eating. (He was also 4 when it all happened). When they finally called us at 2ish to go down stairs, he was so excited thinking we were having lunch... Then fell silent when he realized we weren't at the canteen. And then totally flipped when we walked into the Operating theatre and everyone was gowned up and masked up. And the anesthetist had to put the gas mask on him. Hmm

He put up the biggest fight and covered his mouth. And screamed. Then slumped. It was horrible.

It was all over in an hour or just after. I ran to get McDonald's as a treat. And then came back with it. He came round, was grumpy but v hungry. Stuffed his face, then threw up because of the GA. Hmm He was fine afterwards.

Moral of the story, don't let him eat too quickly after he comes round!! Grin

Report
takeaway2 · 29/07/2013 20:21

Yes and it's good to see that you are eating. You do need to keep up your health and well being. Whilst at GOSH we met so many kids on the same ward with cancer (we were on the immunology ward since its shared wit rhuematology) and the rooms were all double chambered to protect the kids etc. their families literally stay there for months. But so many positive stories too.

Report
RandomMess · 29/07/2013 20:23

So sorry to read your news x

Report
marriedinwhiteisback · 29/07/2013 20:29

Fingers and toes crossed. Still with love and prayers.

Report

Don’t want to miss threads like this?

Weekly

Sign up to our weekly round up and get all the best threads sent straight to your inbox!

Log in to update your newsletter preferences.

You've subscribed!

Twunk · 29/07/2013 20:48

Oh takeaway it's that sort of thing I find hard. I'm normally so bloody indulgent. Mind you, he doesn't have much appetite right now so I am hoping that the morning won't be too awful in that way. I know he will freak going to theatre. I am dreading that.

Noted that I won't rush out and buy McDonalds!

MissGee I can see you wearing a crinoline and covered in cobwebs Smile

OP posts:
Report
takeaway2 · 29/07/2013 20:53

Or get two lots of McDonald's!! Save one for when he's done puking!! Grin

Report
Twunk · 29/07/2013 21:02

Buy 2, get bored, eat them both Grin

OP posts:
Report
Please create an account

To comment on this thread you need to create a Mumsnet account.