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AIBU?

To be worried

511 replies

nobullshitallowed · 22/03/2017 13:19

Sorry I'm posting for traffic, have already started a thread and had barely any replies. Not sure what I'm looking for really, a handhold or people who have been through similar.

Around 6-7 weeks ago, my ds aged 6 suddenly started complaining of hip/joint aches and pains. I put it down to growing pains.

3 weeks ago he went really lethargic, he sleeps 6-6.30 so is having enough sleep. His teachers started commenting that he was tired in school, told he has gone from a really happy active boy to quite irritable.

Managed to get him into the doctors, who checked him over, went through quite a lot with him. He's now urgently requested that he have full bloods done. And referred him urgently to a children's hospital.

He then told asked me what I thought they would be testing for, I have been googling and each time it comes up with leukaemia . So I told asked my doctor that. He said that was a big worry and it's why he is referring him so quickly. He said the way my son has explained the pain and pointed it out it rules out other causes.

He's at hospital next Thursday, and I'm bloody terrified. Feel awful for not taking it seriously at first. I honestly just thought growing pains.

My other ds 3 is diagnosed epileptic, I'm petrified for what's to come for ds 6 now

Would be grateful for anyone who has been through similar to reply.

Thanks for reading sorry if it's all mumbled I just feel so numb and not really explaining myself properly.

OP posts:

Report

fuzzyfozzy · 01/04/2017 23:41

TBH me neither

nobullshitallowed · 01/04/2017 22:48

Sorry to hear that @fuzzyfozzy, I'm. Not sure how to pm only how to reply to them. Xx

OP posts:

fuzzyfozzy · 01/04/2017 14:55

Hi. I've just been diagnosed with the same. Pm me if I can help.

Mcchickenbb41 · 30/03/2017 23:02

Ok I was faced with a load of information recently. I sat down with pad and paper and made notes of the most relevant. It helped me. One step at a time op it's been a bloody hard week

nobullshitallowed · 30/03/2017 22:56

D is fine, fed up with the needles and hospitals. I'm a bit overwhelmed with the information. Just need to get my head around it all x

OP posts:

Mcchickenbb41 · 30/03/2017 22:39

Glad you finally found out what was wrong. That's half the battle. How are you both feeling ? X

Stuffofawesome · 30/03/2017 22:15

My dad had that op. Lived a long and productive life. Beat wishes to you all

Rescuepuppydaft2 · 30/03/2017 21:54

Ah that makes sense and also explains his tiredness and bruising, hopefully they have some idea of how they want to proceed treatment wise!
www.nhs.uk/conditions/polycythaemia/Pages/Introduction.aspx

nobullshitallowed · 30/03/2017 21:14

D has got Polycythaemia. Also had/had an infection in his joints. He's had iv antibiotics again today. And bloods taken after so will see when the bloods get back tomorrow if the infection is gone I think.

Haven't got much understanding on polycythaemia yet. Got some reading material to get on with though x

OP posts:

TheDogsEatingCaptainAmerica · 30/03/2017 20:34

Just read this thread. What an amazing Mum you are. I wish all the best for you both, Dylan sounds like an absolute sweetheart

PovertyJetset · 30/03/2017 20:22

You're both so brilliant. Hope all
Was ok today and you felt supported and the hospital was patient with both of you.

WellErrr · 30/03/2017 17:23

Hope he's feeling better soon. What did they say it is?

2017SoFarSoGood · 30/03/2017 17:11

Dylan is all set for whatever happens (happened?) today - good plan! Heres a and to keep him company.

We are all here to help you OP, someone is bound to have good information to help you get through this. Just keep us posted as you get clearer on what's happening.

picklemepopcorn · 30/03/2017 14:16

I'm glad the hospital is being supportive. Hopefully things will get a bit clearer.

Aimtomisbehave · 30/03/2017 11:37

Sorry you're going through all this with your son - you both are so brave!
I can't help with any medical stuff but With regards to knitting - I've just learnt to knit in the last couple of months and you tube is such a useful mine of information! I found it really helped to actually see the stitches in order to learn them, especially if you struggle to remember the bit you've just read i the book whilst looking at the pictures and looking at what you are doing! I just found it easier to see the tutorial and try and copy what the screen is showing.
to you and your amazing family

Stuffofawesome · 30/03/2017 11:22

Thinking of you today.

Penfold007 · 30/03/2017 11:20

Good luck today Dylan x

Marilynsbigsister · 30/03/2017 10:49

OP - this is one hell of a thing to go through on your own . Why has your DH not taken some time off to support you and Dylan ? Hope today goes well .

myoriginal3 · 30/03/2017 10:22

Aw bless him. Hopefully you can gain a better understanding of his diagnosis today.

MadisonAvenue · 30/03/2017 10:00

Really hope you get some answers today OP. Your boy is so brave, I see he has his numbing cream on! My boys have had lots of blood tests and it was only at their most recent appointments in children's out patients that a numbing spray was used and they found it so much better.

Mcchickenbb41 · 30/03/2017 09:57

That's heartbreaking what you just shared with us. Keep posting op especially when you find out what it is as there will be someone on here that will have dealt with the same. And the rest of us can offer support on the way. Your doing a great job x

Stripeyblanket · 30/03/2017 08:56

Sorry it's still ongoing. Your DS sounds like he is being a little superstar! What do they think it is?

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nobullshitallowed · 30/03/2017 08:09

We are more prepared for bloods today though

To be worried

OP posts:

nobullshitallowed · 30/03/2017 08:00

We are back in hospital today.

Got another blood test today and talk with the specialist. I'm hoping to get some answers today, I'm a bit confused with his diagnosis as it doesn't actually explain why he's having the abnormal blood results.

He's also woken up this morning with bruising, he's not fallen or anything like that. Hopefully after today I will have a better understanding.

It may just be me not understanding which I hope it is, I will add this part of back story so you can understand why I have a few problems with gaining an understanding of things.
When I was a baby, I was abused by my parents and sustained a head injury, it now causes problems with my memory and my ability to take in information. The hospital understand this and print everything out for me so I can read it in my own time, to help me gain a better understanding.

I've written down all my questions and have gone through all the information the hospital have given me, hopefully it's all sorted out today.

Thankyou again for all your continued support xx

OP posts:

Dairymilkmuncher · 29/03/2017 21:13

Ah I'm so happy for you and Dylan, OP he sounds lovely and I want some of that cake waaaaaa big hugs to you both hope you get some good sleep and he has a speedy recovery xx

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