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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

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Twunk · 27/07/2013 08:57

I know it's rare that induction therapy doesn't work but that's currently taking up all my thoughts. That and the treatment he's going to have. I need a time machine Sad

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hairylittlegoblin · 27/07/2013 08:58

Thank goodness you trusted your instructs and sought a diagnosis so carefully.

Alex is very blessed to have a mum like you who knows him so well and knows when things aren't right. You will be so valuable to him when the treatment starts and he needs someone who can make it a little better (not that you're not doing that now but ou know what I mean).

Praying for you all.

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TabithaMcKitten · 27/07/2013 09:09

The beauty of ALL is that they know what to do to cure it and have an answer and plan for everything. Our leukaemia specialist nurse told us that they don't really have good and bad results, more good and 'less good'.

Still thinking of you and your lovely boy xx

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Twunk · 27/07/2013 09:52

Thanks tabitha xx

Survival rates keep going through my head. I can't stop it.

DH broke down this morning - his dad called (he's living in Japan). It's rare he actually misses his dad, but we could do with his logic and calmness right now.

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Willabywallaby · 27/07/2013 10:21

I'm so sorry to read about this, you and all your family are in my thoughts.

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EatYourCrusts · 27/07/2013 16:54

I started reading this thinking it sounds quite like my DD who also has had night sweats and fevers, couldn't walk, pain in limbs, also she's had swollen lymph nodes, drastic weight loss, tired all the time.
I will take her back to the doctor on Monday. They did some blood tests to rule out lymphoma (which scared me of course), and said it was probably a lingering virus with post viral arthritis, but maybe I need to ask for more tests.

Twunk, so sorry your news has been so worrying. I will be thinking about you and Alex. Good luck. Flowers

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SolomanDaisy · 27/07/2013 19:50

I'm so sorry, I read the thread hoping that it would be good news. Have you got support in the Netherlands? If there's anything a stranger can help with, please let me know.

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Queenmarigold · 27/07/2013 20:07

How are you today? How's your little boy? Thinking of you - and him x

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NervyWervy · 27/07/2013 20:31

Thinking of you Twunk, and wishing Alex all the best. Be kind to yourself and do whatever you can to make life that tiny bit easier for a while. What a great mum you are for persevering with getting an answer. X

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Twunk · 27/07/2013 21:28

QueenMarigold we are okay today. We're in a kind of limbo because I know we're going to the hospital in Utrecht on Monday and it will all get serious.

I'll try and add a couple of photos to my profile - if I can do that on my phone.

Alex has eaten no less than 4 sprinkles sandwiches (whole rounds), a cake and a fun size smarties box today. His diet is largely chocolate based which is fine as long as he has calories I don't care.

My parents are coming next week - I hadn't heard from them but they were discussing what to do and looking into flights. I called mum and spoke to her - she said she and dad would take it in turns to come and look after us all. I'm 38 but I still need my mum Sad

Alex has had a blood transfusion and is much the better for it. What is very sad for me is that he cannot bear to be hugged. He's such a tactile child who loves hugs and kisses but it's so painful for him. He's beginning to understand we're going to have to stay in hospital for a while.

He's drinking lots of milk - his favourite drink. The nurse had to get some from another ward! All good calories though Smile

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Twunk · 27/07/2013 21:42

Solomon - so many of my friends are away on holiday at the moment, but generally I do have a big support network - I'm a member of a club through which I know many people plus the parents at DS1's school are brilliant. I know a few families in my neighbourhood too.

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Twunk · 27/07/2013 21:44

Eatyourcrusts - they would have looked for leukaemic cells as a matter of course, but as you can see from Alex he got at least 3 false negatives so go back to your GP at least for reassurance. I hope your DD makes a swift recovery xx

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Vajazzler · 27/07/2013 21:53

I never know what to say on threads like these but have a hug (()) thinking of you and your family x

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AlwaysWashing · 27/07/2013 21:59

How is it you can feel so deeply for someone you have never and will never know I wonder. I'm fighting back tears for you and your boy Twunk.
They're so, so precious and then something like this happens and you wonder how you will ever be able to draw breath again. My DS1 had meningitis and I thought in the first hours of diagnosis that I would shatter into a million pieces - we later found after all the nastier tests that it was viral and we breathed again but it was enough to know that I would never be the same again. I am sending you wishes of immense strength so you will be able to carry you and your family through this, to get your boy well again.
I sincerely hope that the treatment goes well and Alex will be fit and well as soon as possible. X

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Trazzletoes · 27/07/2013 22:07

Hi twunk massive hugs from yet another mum who understands, to a degree, what you are going through.

You will get through this.

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LegoAcupuncture · 27/07/2013 22:14

So sorry to here this. Sending positive vibes for your whole family.

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CoteDAzur · 27/07/2013 22:16

So sorry you are going through this, Twunk Sad

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DaPrincessBride · 27/07/2013 22:16

I just wanted to send you all hugs and prayers that Alex is fit and well soon. With all the love and care he is clearly getting, he is in the best possible hands x

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5madthings · 27/07/2013 22:24

So.sorry to hear this, thinking of you all and sending love and strength xxxx

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Twunk · 27/07/2013 22:39

I've tried to add pictures but it turned them all through 90 degrees! Wft?

Thanks all. I've lurked on mumsnet (posting occasionally with different usernames) for 5 years and have never needed to post before all this started, but the response I've had is just amazing.

Alex is STILL playing with his bed...it's 11.40pm. Right, time to get tough

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mummylin2495 · 28/07/2013 00:49

He is a cute little boy and I hope he recovers as quick as possible. Good on you on chasing up a diagnosis. Wishing you well.

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Apileofballyhoo · 28/07/2013 01:02

Just adding good wishes and prayers. You sound like a lovely Mum. It must have been the most terrible shock.

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Apileofballyhoo · 28/07/2013 01:08

It sounds like you have a lovely supportive family too. I really will be praying for all of you and especially little Alex, for a speedy recovery and that he won't have pain.

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ShiftyFades · 28/07/2013 05:08

Here's my hand, squeeze it when you need to. I'm so sorry you are going through this. Alex is lucky to have you there fighting for him.
I'll be thinking of you all and I hope your mum and dad arrive shortly xx

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ShiftyFades · 28/07/2013 05:08

Here's my hand, squeeze it when you need to. I'm so sorry you are going through this. Alex is lucky to have you there fighting for him.
I'll be thinking of you all and I hope your mum and dad arrive shortly xx

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