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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

Trazzletoes Thu 01-Aug-13 22:27:26

Twunk welcome to the sudden world where you realise exactly how selfish people can be, unfortunately. Not specifically re: non-vaccination as people have reasons for that usually, but I get proper rage now at people who send their children out without waiting 48 hours post vomit/ diarrhoea. If your DS hasn't had chickenpox and other family members haven't either, you may want to look in to vaccination. DD was offered it on the. NHS here as neither she nor Joe had had it.

I appreciate these aren't imminent worries! But something to perhaps bear in mind for the future.

labtest Thu 01-Aug-13 22:28:57

We didnt get a choice and my daughter was given a portacath which I'm glad about. She has been able to go swimming throughout treatment and I've not had to worry about it being knocked or infected as much as I would with a Hickman. She is allergic to numbing creams but been fine having the port accessed without it.

IwishIwasmoreorganised Thu 01-Aug-13 22:38:03

Just come across this thread.

Alex sounds like a star and like a very loved little boy.

Twunk you sound like you're coping brilliantly on this dreadfully steep learning curve. Do you speak the local lingo or are the Drs able to converse on the technical bits in English?

Lots of love heading your way from South Wales.

Xx

takeaway2 Fri 02-Aug-13 07:21:22

It's amazingly selfish isn't it? DS got his illness after getting chicken pox - now we have to be acutely aware of pox or any other contagious disease like measles etc in the area. Of course we then bumped into some acquaintances who were out in town with a poxy baby in a buggy and got told in a whisper 'oh yes baby has the pox - best not come near...' angry

Hang in there. You and Alex are doing real well.

MrsDeVere Fri 02-Aug-13 10:48:21

lab we were nudged to a port and I have to be honest and say we had a lot if problems with it. We eventually switched and it was so much easier.
But there are pros and cons to both and the port did sound the better option at the time.

I guess it might be a moot point if the hospital tends towards one or the other smile

Twunk Fri 02-Aug-13 13:55:45

Yes MrsDeVere I think we might be "told" which one we're having.

Well I am getting more and more scared. The chemo next week...what can I expect? I know everyone reacts differently...but broadly..?

Twunk Fri 02-Aug-13 13:56:56

iwish my Dutch is truly rubbish blush

MrsDeVere Fri 02-Aug-13 16:29:01

We can all tell you how our children reacted and the likelihood is that You will get differing answers from us all smile

Anti sickness drugs are very good now and are usually given at the same time as the chemo.

As you little lad has been so poorly you might see an improvement in him quite quickly. Sometimes I think it's harder on the 'well' children who are suddenly given drugs that make them feel awful.

There are so many possible side affects its impossible to describe them and some kids get hardly any.

Tiredness, sickness, rashes and spikes in temperature are possibly the most common.

Twunk Fri 02-Aug-13 19:37:34

Thank you! Actually that's the best explanation I've had so far!

I'm worried about infections, I think mostly because the nurses are scaring me. I don't think they realise how clued-up I am.

I tell you what though, I've never known hospital notes read so thoroughly - everyone "new" I speak to seems to know everything I've said, which is a tad unnerving.

Actually Alex is very well now - so well in fact he's walking (he's a touch wobbly) and cycled round the rooftop car park.

Twunk Fri 02-Aug-13 19:40:39

Consultant came in smiling earlier - the cytogenetics are back and they're good - the type is very common in children of Alex's age and it responds well to treatment.

As my brother put it "I'm so glad the doctors are finding this tediously familiar". smile

MrsDeVere Fri 02-Aug-13 20:44:54

That's great news.
Really great smile
The 'infection' thing.....it is very important and is likely to become a rather time consuming part of your new life for a while.
There are strict protocols for children on treatment if they get a fever.
I won't go into detail because things may vary a bit.
But basically if Alex gets a temp above a certain level you will have to bring him into hospital for IV antibiotics (usually at least 3 days)

They start with first line anti bs and in the meantime they attempt to find the site of the infection.
Unless its a line infection it generally remains a mystery and you go home none the wiser smile

You will become almost psychic in your ability to spot the signs of an infection (as well as just being able to look at him and say 'hmmm I reckon your HB is low')

Some parents become very anxious about infection control, others a bit less so. I reckon their kids probably end up with about the same level of infection tbh.

But it can be soothing to clean and 'protect' our kids from germs. It at least feels proactive.

They may have explained neutrophil counts...that is your key.
The lower the count, the more prone to infection and you can generally predict when their counts will drop (due to treatment)

I hope that is not too much info for you, I don't want to overwhelm you. Tell me to shut up if you want grin

Twunk Sat 03-Aug-13 15:43:24

No that's great MrsDv. It's a scary new world. I'm sure I will get used to it but I'm scared of doing something wrong. I have hardly taken either child to the doctor, but as it turns out every time I have taken Alex he has ended up in hospital, so maybe I should learn to trust my judgment.

Not much going on here as it's the weekend. DS1 is playing up, my mum looks bored and Alex is quite well so now also bored. I am bored too. The days just drag. I prefer it to the scary days before though. No pleasing some people.

Mrs Dv I looked at your profile and read about your daughter. She was beautiful - you must be so proud of her. I love your favourite pic of her.

MrsDeVere Sat 03-Aug-13 16:00:02

The boredom! Oh yes.
Very hard with a little one.
It's another thing you will find a way round. Can you knit or crochet? It probably seems bonkers now but a portable hobby will be very useful in the weeks to come smile

Maybe a kind friend will supply Alex with an iPad ;)

Hopefully your little lad will spend most of his time at home and only come back to hospital for treatments.

Lots of kids get through like that.

Yes my Billie was beautiful. smile You are not to worry, teenagers react very differently to this disease than younger children.

If you want to ask me anything I will do my best to answer and there are lots of people here who know about ths stuff.
There is a dedicated thread when you are ready x

Twunk Sat 03-Aug-13 19:01:19

Oh we have iPads aplenty - but the youth of today just don't appreciate the wonderful technology we have. I had to manage with a Commodore 64. And I remember when all this was fields wink

I can almost knit. I am a little careless and keep ending up with longer rows than I started with.....

LoveSewingBee Sat 03-Aug-13 20:34:14

Maybe one way to deal with the boredom is to create some structure (this could equally apply to ds1 and dm ...).

Not sure if this works for you, but one way would be to create a list of possible activities and agree to pick one of the list every morning/afternoon or more or less often. Time to do nothing much is okay too.

Things we tend to have on our list:
- board games (4 in a row or proper board games)
- dvd
- audio cd
- drawing, this could be on the laptop like on several of the websites for kids
- computer game
- lego/play mobile
- reading a story
- jigsaw puzzle (could also be on website)
- playing with cars/trains/favourite toys
- making paper aircraft, little hats, boats etc.
- making a simple mosaic or animal mask or spaghetti/rice/pasta pictures or any other Mr Maker type project
- beads (if no beads are available, you could use pasta and string)
-ds1- making cupcakes or cookies or pizza
- ds1 walk to playground/park, skipping, ball games, bike, maybe that would distract him a little and tire him out a bit.

Not sure if this is of any help at all.

Twunk Sat 03-Aug-13 20:51:37

Actually that is jolly helpful sewingbee - I guess I'd got such in the habit of having a poorly child I've forgotten how to actually do anything else with him. Also, I've been shattered.

Actually today we played with playdoh, which was therapeutic! MsGee has sent a book of things to do, I shall pick one in the morning.

takeaway2 Sat 03-Aug-13 21:07:03

The structure at GOSH saved us from going mad actually. With the 'nursery' split into am and pm sessions so you know there's crafts in the am and say cooking in the pm. And whatever in between (eg blood tests, heart echo etcetc).

We were also lucky in that we could move freely so dh found a park found the corner and frequented that. Even made it to the natural history museum one time! Ate plenty of yo sushi and waitrose ready meals (waitrose the nearest supermarket)!!

Twunk Sat 03-Aug-13 21:22:15

Are you trying to make me jealous?! I miss Waitrose and I'd kill for sushi. wink

takeaway2 Sat 03-Aug-13 21:45:00

Lol. That was about the only 'perk' about being stuck in that part of central London! wink

Trazzletoes Sun 04-Aug-13 09:51:09

Re: the infections... Please don't worry too much. Yes it is scary but for the most part there's nothing you can do about them. The vast majority of any infections he will get will be from bugs he already carries inside him - in his gut or whatever. My Joe is a carrier of c diff (its one of those bugs that's characterised as a superbug like MRSA though I don't understand quite why as an infection is controllable - perhaps because they can't get rid of it completely...) anyway, he's had it 4 times! I think on our ward they average identifying a specific infection in approximately 1 in 5 fevers so you may often not find out what's happening.

We try to take precautions by not taking Joe to soft play or to farms etc but there are plenty of parents that do. Plus all being well Joe's treatment is just over a year.

There's not much point me telling you how he coped with chemo as his drugs/ quantity etc will be totally different.

I hope you are all bearing up ok.

Twunk Sun 04-Aug-13 13:25:50

Yes I must be calm! I will not turn into a mad crazy germ-defeating harridan!

Just seen the doctor and she has put my mind at rest a bit.

lurkerspeaks Sun 04-Aug-13 20:57:28

Seriously think about crochet or needle point. Portable, therapeutic and time consuming.

You are going to spend a lot of time incarcerated.

Thoughts from the frozen north (which is actually sunny today).

MrsDeVere Sun 04-Aug-13 21:12:26

Cross stitch is good too. Very easy and you can do it even if your concentration isn't brilliant.

If you are not a fan of kitties and teddies you can check out my fave
www.subversivecrossstitch.com/

grin

Twunk Sun 04-Aug-13 21:37:17

Subversive cross stitch!! Now that's right down my alley!

I have put a call out for someone to teach me crochet - am useless at learning things from books or YouTube.

DH was very glum earlier, as am I. We identified it as a lack of adrenaline - we've been living off it for over a week and now it has slumped, so have we. I had trouble keeping my eyes open today.

Alex has been a joy though. His appetite is kicking in now, though not out of hand. He has puffed up a bit, nearly all round his middle. He feels much more substantial.

TheSecondComing Sun 04-Aug-13 21:52:55

Message withdrawn at poster's request.

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