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

[Twunk]

I honestly think I am losing the plot.

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

[Twunk]

We lived in a small town in Hertfordshire before moving here - a Simply Food opened up about 2 months before we left. We were quite relieved we were leaving as we would have been broke. We're much more sensible now... (honest)

[Ebb]

I've been thinking of you and Alex Twunk and following your ups and downs. I laughed at your excitement of M&S. I think I responded the same when they opened one up within walking distance of me.

[Twunk]

Bat signal received loud and clear

We're doing okay. Alex doesn't mind being ill because it means he doesn't have to start school, "I'm a bit poorly mummy"

Thanks for reassurance re GA. He was much better after the next one. Tuesday he has an LP under sedation.

But a postcard will be most welcome and we will send one back from the Netherlands! Will pm you here or there x

[DianaTrent]

Hi Twunk, just checking in to say hello. You would know of me from somewhere else - think batsignal and you'll know who I am . My DD was diagnosed with the same thing back in 2009. Just wanted to say that my DD had the same very low heart rate after her first trip to theatre as well, but it never happened again after that. I think she was just too low at that initial point to cope with the anaesthetic and the morphine all at once. PM me here or over there if you want to at any time, and let me know if Alex would like DD to send him a postcard to say she knows how he feels but it gets better. Everything crossed for a fantastic, perfect MRD result for little Alex to follow the amazing progress he's making so far.

[Twunk]

It's on the A12 - Hellevliet services (near the exit to De Meern) - DS1 and Alex were laughing at how excited I was because I was squealing so much.

Chocolate fudge pudding has restorative qualities you say? Well I must clearly try some.

Thanks sewingbee you are so lovely. xxxx

[LoveSewingBee]

Ah food only, still lovely though. Would love to have a M&S nearby ...

[LoveSewingBee]

Oh a M&S in Utrecht, only food or also other things?

I will phone to check if there is any opportunity for Alex to get in earlier and let you know.

[Quangle]

Cor! That's fab. The hot chocolate fudge pudding is highly recommended for its restorative properties.

[Twunk]

OMG OMG a Marks and Spencer's simply food is opening near us! We've gone a couple of times to the one in Amsterdam but its actually quite a hassle.

And it's on the way to the hospital. Yay!!!

[Twunk]

We love the spoorwegmuseum! Unfortunately I've let our museumkaarten expire but I think the boys would LOVE chuggington. I am a bit worried about crowds...I wonder if they would let us in a bit early? Hmmm.

Alex is doing well - much happier now he's off the steroids

[LoveSewingBee]

At the top right corner of the website of het spoorwegmuseum Utrecht you can switch from Dutch to English.

[LoveSewingBee]

Hope you all had a better day today.

If your boys like steam trains, in the weekend of 21 and 22 September there will be lots of steam trains at the Spoorwegmuseum in Utrecht. Also, during half term (19 to 27 October) there is a Chuggington event at the Spoorweg museum. However, also without these special events it may be a nice place to visit. There are lots of platforms but from memory there is good access with lifts.

[Twunk]

Today was less good - he's tired and fed up. But he enjoyed McDonald's and an ice cream

[Quangle]

Twunk, just checking in and waving really. Amazing how the tiny things make us feel better (baking a cake, having a nice walk). The treatment days sound long and exhausting but I'm glad you are getting to do other things too occasionally. Hope Alex is still in a good mood!

[Twunk]

We have no relatives near. My sister is in the SW of France and everyone else is in England. Oh except the PILs who are in Japan!

My parents have been brilliant though, and I'm looking forward to seeing my sister in a couple of weeks.

We've had a good day. Firstly, Alex's last steroid dose. Secondly we went out for a nice walk and a drink. Thirdly we baked (and for the first time ever I was calm and let Alex help). Plus Alex was in a good mood! First time he's been fairly cheerful for about 3 weeks.

[takeaway2]

Hi Twunk!

Holiday was good. We didn't go away last year as we were still panicking and on medication with the team not really clear what he really had - so I really feel for you. Didn't want to travel too far in case something happened and was too exhausted to do anything else beyond hospital, bloods and everything! He started reception last year so we of course, missed all the meetings, buying of uniforms etc but it was good to have a diagnosis before school started...

DS is good. Making the most of his last day of holiday before school starts on Wednesday. Dr said we can do blood tests every 6 weeks now - woo hoo!! Small steps (it was weekly then monthly and now 6 weeks!!). Dr did say we can do it in 8 weeks but I thought we ought to take things slower!

Having support is great. We had a good network of friends. Relatives don't live near (6hr drive or 13hr flight!) so we had to rely on our network of friends. Thankfully alot of them are also 'not from around here' so they get the friends-almost like family sort of relationship...!

[peachypips]

Hi- just seen this thread for the first time. Sorry this has happened to you but so encouraging about the 'blasts'.

Sending you love and prayers from the Pips household.

[Twunk]

No respite care. But lots of support.

[Twunk]

Hi takeaway! Did you have a good holiday? How is DS?

Today was the long day but at least they could start treatment. Woke at 6, left at 7, hospital by 8 and straight to lab for blood test. Then he had a drip that lasted from 10 until 7. I had a half hour break when one of the specialist play workers came and spent some time with him.

DH arrived 6.30pm. He left to get DS1 in the bath and Alex and I finally got home 8.30 zzzzzz

DH picked up the new (2nd hand) car. It's dull but it will do the job.

[takeaway2]

Hi Twunk
Been away on holiday but so pleased the drs sound positive.

It's difficult when you have another child and you feel torn to want to do things for them too. Our family split up briefly when DS was in gosh as we don't live in London. So dd was rather confused as to where I was (or perhaps more importantly where her boob was!!!) .

Hang in there. Do you get respite time? X

[Twunk]

I've had a few messages with personal details removed, in case anyone was wondering.

[Twunk]

We had another GA at the hospital yesterday but he was just a day case - he had his first bone marrow taken for an "MRD" test which will determine what course of treatment he has after 21 weeks. I won't get the results until the second one at 12 weeks.

The next phase of treatment starts Monday - I'm to be at the hospital 8am which means missing taking DS1 to school on the first day back

Depending on his blood tests he will or won't get this treatment, which means I may also miss picking up DS1 too.

[ShiftyFades]

Thinking of you Twunks, you are coping brilliantly, Alex is lucky to have you x

[InSpaceNooneCanHearYouScream]

Oh good- my starting dose didn't really help me so my doctor doubled it ( 40mg of fluoxetine) which has made all the difference.

[Twunk]

Space thank you. I've spoken to the dr recently as she phoned to see how we are. I'm on 10mg of paroxetine anyway, so we'll see how it goes and if I need more.