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

(369 Posts)
Twunk Thu 25-Jul-13 10:47:03

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

Caster8 Fri 26-Jul-13 18:35:57

So so sorry.
I will pray for you all if that is ok? Hope you are not offended by me writing that?

Do you have friends/family to come and support you at this time?

mrsdinklage Fri 26-Jul-13 18:42:14

Twunk - I am so sorry, hugs and prayers for you all.

Badvoc Fri 26-Jul-13 18:47:07

So sorry op.
Sending love x

MoreThanWords Fri 26-Jul-13 18:51:21

Sending you love, strength and positive thoughts to get through this x I assume treatment will start immediately.

Thinking of you x

Kveta Fri 26-Jul-13 18:54:04

Oh no twunk sad hope it is a very treatable one, and they have a plan lined up soon.

xx

Twunk Fri 26-Jul-13 19:05:15

Thanks everyone - DH Is here and they're letting us stay in a room all together tonight. We're in a "local" hospital and will be moved to Utrecht for treatment - but I wish we could stay here as they're so lovely (just don't have the facilities) and it's 5 minutes drive from our house.

All my friends are away on holiday! It is the end of the first week of the school holidays and they've all gone. The ones I would ask for help from anyway.

I called my parents earlier - they're at my sisters in SW France - I assumed they'd come straight here but they've not been in touch. Understandably they were very shocked.

My sister is also on holiday (mum and dad are looking after their house). Don't know about my brother. PIL have just moved to bloody Japan! for a year.

All in all we can rely on each other for now. sad

Twunk Fri 26-Jul-13 19:06:58

I'm an atheist but not offended by prayers or good vibes. Thank you.

They know they have it early and think it's the most common type. We find out Monday.

permaquandry Fri 26-Jul-13 19:18:34

Twunk, I'm so sorry for you, DH and especially your DS. I wish him huge strength and get well wishes.

I can't understand how it's taken so many attempts and tests to diagnose. I hope it's because it is very early days and completely treatable.

If you need your parents to come, tell them. They may just not know what to do and are waiting to do whatever you want them to do.

Will be thinking of you.

mummylin Fri 26-Jul-13 19:18:46

So sorry you are having to go through this, wishing your son the best possible outcome.

Freesia2013 Fri 26-Jul-13 19:18:59

Try to be positive as at least the doctors know what it is now, sending you best wishes and hope for your boy xx

ghosteditor Fri 26-Jul-13 19:25:14

Twunk, I don't know you, but I'm wishing you and your son all the strength in the world, and speedy treatment and healing.

When you're ready do start a thread for support - there are a lot of wise and kind mamas here.

Big hugs. brew

TabithaMcKitten Fri 26-Jul-13 19:26:07

When I read your posts I immediately thought of leukaemia, but saw he had had tests previously for it so i didn't post. I'm so sorry that this has happened, but I am 18 months on from the horrible day you are having today and can promise you that you will get through it. My son was diagnosed with ALL in January 2012 at the age of 3 and the feeling upon diagnosis is indescribable. It is very unfair that this has happened, but you will amaze yourself with your ability to cope and your son's bravery and resilience will astound you. At times you will feel like you will never be happy again, but we are actually happier than ever believe it or not!

Leukaemia is cancer research's success story - the treatment is amazing. When my son was diagnosed the consultant described it as 'life threatening if nothing is done, but we know how to cure it and we will'.

If you have any questions at all, no matter how silly or scary you may think they are, please message me and I would be glad to help. I am wishing you and your family all the very best xxxx

orangepudding Fri 26-Jul-13 19:26:13

Twunk, I'm so sorry to hear your son is so unwell. I hope he makes a full recovery and some of your family are available to give you the support you need.

PseudoBadger Fri 26-Jul-13 19:30:10

Oh I'm so sorry. Your poor boy sad I'm thinking of you all xx

AIMGA Fri 26-Jul-13 19:31:57

ALL my thoughts are with you Twunk xx

StillSlightlyCrumpled Fri 26-Jul-13 19:32:18

Oh Twunk, what a dreadful shock for you all sad.

Tabitha that was such a lovely post & I hope your DS is doing well.

Twunk adding a hand to hold and positive thoughts for you and your family x

Pozzled Fri 26-Jul-13 19:39:06

Twunk, so sorry to hear your news. Thinking of you and sending positive vibes and wishes for your DD.

Sticklebug Fri 26-Jul-13 19:44:18

Sending hugs and posiive vibes across the miles. Will also pray for you and your boy.

Caught early, leukemia has a really good prognosis. Try not to look online - you only hear the bad news stories....

Twunk Fri 26-Jul-13 19:45:32

Tabitha you have just made me cry (yet again). Thank you for posting such encouraging news. I'm about to tell DH what the Dr said. Yes this must be very early stages - though he has anaemia his platelets are fine (plus results were clearly inconclusive 3 weeks ago).

I am scared about the treatment and poor Alex (I feel happier naming him) suffering. I wish I could take it for him - I'm hard I went through a syntocin induced labour with no pain relief ffs!

This is so fucking scary.

Quangle Fri 26-Jul-13 19:53:34

Oh twunk. I'm so sorry to read this. Thank goodness you persisted in seeking tests. I can't imagine how you are feeling but I know there's amazing support and advice on here. Thinking of you and DS.

TabithaMcKitten Fri 26-Jul-13 19:54:09

Sorry for making you cry! Honestly, soon this will feel like 'just' a blip - it sounds flippant, but it's true. My little boy is the picture of health right now - he starts school in September and enjoys going to nursery, gymnastics lessons and playing with his big brother and dog. Nobody would know he had anything going on. I was also told that it was picked up early - he had probably had it for a couple of weeks, if that. In a way it made it harder to cope with the shock of the diagnosis as he was not unwell in any way, I can imagine that having clear test results would have made this seem even more unreal.

Another bizarre thing I will say is that he is a 'good' age to get it - he will adjust to your new normal really quickly and will get you all through this journey. My oldest child was also 5 when his brother was diagnosed so if you've got any questions about that too just shout!

You sound strong and positive already which is wonderful x x

Poppins27 Fri 26-Jul-13 19:55:16

Twunk I couldn't possibly see this thread and not send my biggest best wishes to you and will keep everything crossed that Alex is feeling better soon. I have no experience of this or words of wisdom to offer, just an understanding as a mum of how helpless I imagine you feel right now. Sending positive & healthy thoughts in abundance in your direction xx

youarewinning Fri 26-Jul-13 20:01:29

Oh no - I'm so sorry your going through this. Sending lot's of hugs your way.

I'm glad you followed your instinct and kept going to dr even though the news is not good.

Twunk Fri 26-Jul-13 20:03:12

We're all lined up - DS1 is playing with the hospital bed he's chuffed to be sleeping in, and Alex is lying next to me in a cot. We're watching Cars2 on repeat.

I'm trying to stop myself thinking. I'm going to be spending a lot of time online I think....

I've only read the MacMillan site so as to get a nice kind view of what happens next. It was actually reassuring as i was just told "2 years" by the doctor. I will stay away from the rest of the Internet (other than MN and Facebook!).

Alex is supposed to be starting school in September. I feel bad I was looking forward to some time alone.

God knows if I'll sleep tonight, only had about an hour last night because Alex was poorly. At least now he has a slightly higher dose of paracetamol plus also diclofenac to ease his discomfort.

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