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Original poster

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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Are your children’s vaccines up to date?
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Original poster
Twunk · 31/07/2013 17:17

goinginsane thank you so much. I have several people sending magazines and all sorts at the moment. I think we're going to be swamped!

OP posts:
Original poster
Twunk · 31/07/2013 17:21

Frisky the line (not sure what type yet) goes in on Day 15. I don't know why then particularly but I wasn't able to ask questions yesterday, just too overwhelmed after a terrible day with no sleep and a long wait for results. I think they're just trying to limit information in these first few days so we don't get overload.

OP posts:
MsGee · 31/07/2013 17:52

Glad your folks are there, thinking of you xxx

takeaway2 · 31/07/2013 20:52

Great to hear the lymphocytes are down 50%. It's good that its reacting so quickly.

For DS it was amazing that his first bloods post meds was back down to near normal. The info sheet and all of google told us that it would take 6-12 weeks. Fingers crossed they will start reducing his meds at our next consult in October ...

You try and get some rest. You need it... Thanks

ChickenLickenSticken · 31/07/2013 22:08

Such a lot to take in in such little time. You are doing a grand job by the sounds of it. Be sure to continue to let that steam off, I hope the release helps even a little.

Original poster
Twunk · 01/08/2013 11:29

The "proper doctor" confirmed the blood tests were good. She even smiled Smile

OP posts:
Nocakeformeplease · 01/08/2013 12:20

Fantastic news Twunk Smile

MsGee · 01/08/2013 13:24

That is great news! Small steps to beating this. Well done to you and the very strong and brave Alex xx

TabithaMcKitten · 01/08/2013 15:37

Brilliant news about his bloods! And look how far you have come in just a few short days - you are learning the leukaemia lingo already Smile

Do you know if you will be given an option of what central line he has? Have they given you any idea of what the treatment protocol entails yet?

Lots of love to you and your super little Alex xxx

Original poster
Twunk · 01/08/2013 18:02

No idea re central line! I've heard of a Hickman line (he was meant to have one at 4 days old but they failed to get it in) but that's all.

OP posts:
Original poster
Twunk · 01/08/2013 18:04

Oh man I wrote a whole big post that has gone... Maybe it will suddenly appear.

OP posts:
marriedinwhiteisback · 01/08/2013 18:42

So pleased Twunk. Am on hols - this is one of the few threads I'm checking. Phew - have just welled up for you.

Trazzletoes · 01/08/2013 19:00

Twunk a Hickman line is a type of central line - it mostly hangs outside the body. The other one they use here is a port which is, I think, completely internal.

Original poster
Twunk · 01/08/2013 20:06

Hello Trazzletoes and Marriedinwhite! Lying in my hospital bed and about to watch Sleb MChef as we have BBC1! Smile

Alex had a lovely day with his brother and also grandparents.

The junior doctor wished she'd videoed the brothers earlier - they were so cute - she said they should be on YouTube. Alex is taking a lot of medicines and DS1 was encouraging him so sweetly - more to the point Alex was listening. Everyone thinks they're adorable if only they knew

Saw the consultant and I'm understanding the treatment a tiny bit better. Chemo starts Tuesday Sad

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MrsDeVere · 01/08/2013 21:04

This reply has been deleted

Message withdrawn at poster's request.

Trazzletoes · 01/08/2013 21:39

I think there are advantages and disadvantages to both really. I would have chosen a port for Joe so he could swim etc (though we haven't had time to even think about going swimming!!!) but he hates the Amla cream and plaster they put on so glad he ended up with a Hickman line after all. But have seen plenty of kids with both and as I said both have good points and bad points.

Starting chemo is scary but once its started, you're on the way - the body can attack the cancer. I know it's easy enough to say you should stay positive and desperately hard to do so, but you can get through this.

TabithaMcKitten · 01/08/2013 21:42

We were given a choice which felt insane given that we were still so shocked that our supposedly healthy boy was so poorly. We spoke to another parent and chose a portacath in the end and I am very pleased we did to be honest. He has never been a big fan of having it accessed and had to be held down for it for many months, but it was all quickly forgotten and the advantages have far outweighed this. The risk of infection is lower than with a hickman line and when it isn't accessed he can be a 'normal' boy and go swimming and have baths and showers etc.

Trazzletoes · 01/08/2013 21:55

Just to clarify: you can still bath with a Hickman line Grin but it has to be held out the way and kept dry, either manually or we sling Joe's behind his back in his wiggly bag.

TabithaMcKitten · 01/08/2013 22:06

Yes, sorry! I meant deep splashy baths that flood the bathroom (standard here!)

Original poster
Twunk · 01/08/2013 22:06

Alex (bless him) has acquired a bit of a reputation after needing 7 people to get blood from him on the first day. He has got tiny veins and it was bloody hard. DH came out needing a Wine

So they might think the Hickman better...

I have to ask them a couple of things and I'm going to write them here as it will go in (I wrote them on a piece of paper and still forget) 1) why do they not treat boys for longer like they do in the UK? 2) my friend keeps going on about protecting his bones from osteoporosis - is this something for which I should have concern?

I still need a nice pretty notebook...

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Original poster
Twunk · 01/08/2013 22:07

Thanks for the info by the way! I feel much clearer on it.

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TabithaMcKitten · 01/08/2013 22:07

I also meant to add that his treatment is for over three years and now he goes four weeks between needing to be accessed so it works out better here Smile

Original poster
Twunk · 01/08/2013 22:10

The depth of bath is not the problem in our house, it's more the bath mate. Methinks Alex should go in first!

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Original poster
Twunk · 01/08/2013 22:15

There's a bloody measles outbreak north of Utrecht, lots of very very religious people there (known as the Bible Belt) who do not vaccinate on principle. There's a Steiner bunch too - same issue. Today this is making me very angry. Thankfully DH and I had measles as children and DS1 had the MMR. Still it's worrying.

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Trazzletoes · 01/08/2013 22:27

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.

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