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

[tinypumpkin]

Another one popping in to see how you are all doing. Thanks for updating, that is so kind of you. I hope you can sense the love and support here for you and your family. Thinking of you as you move to Utrecht on Monday x

[Coro]

Thinking of you all. Hugs and love. X

[RatherBeOnThePiste]

Thinking of you all here too, sending much love from London, gentle hugs for Alex, big ones for you X

[Twunk]

Alex is a changed child since his blood transfusion - pink, smiley, and chatty. His fever is way down too, but he still has a lot of pain. Thankfully we've all realized this needs to be actively managed so the nurses are always on time with it now. I've even been able to give him a gentle hug just now.

I had a bad night - he kept waking screaming so we both got minimal sleep. I fell asleep when DH got here at 12 and could hear DS1 and Alex laughing together as I dropped off.

He's watching car racing on the TV and loving it!

Dreading tomorrow, but have had lots of reassurance that the children's hospital is amazing.

And people are being just amazing. So generous and kind it is a beautiful illustration of just how bloody fantastic people can be.

[Twunk]

I'm already finding resources I never knew I had. After almost no sleep (for 3 nights) Alex and I had a lovely morning racing our beds (up and down!) and laughing at things. We lined up all his cars and took photos of them. It was only when I was expecting DH to arrive and he was a late I finally ran out steam.

He's currently transfixed by a programme called "transport world" which seems to have been created for him

[Twunk]

He is

[FriskyMare]

Another one here Twunk who knows what you are going through. We are now over 13 years from that horrible day when dd aged 2.4 was diagnosed.
You will get through it, get as much info and help from the doctors and nurses and once treatment starts you can be more in control. We used to check off certain injections as a countdown.
It won't be easy, we had set backs, including shin pains 3 months after the end of her treatment when they thought she had relapsed (thankfully she hadn't).
She is now a happy, healthy,bright beautiful, know-it-all 15 year old!!
ps. drinking lots of milk is good, dd drank nearly 2 pints a day and we are sure it helped prevent mouth ulcers.
Lots of love to you all.xx

[Twunk]

He loves milk. I wish I still breastfed as it would have given him so much comfort, but I wasn't to know and it came to a natural end.

He's so much stronger today but I know he's not better. That's what hurts so much.

DH has just come in - they've been playing together in the ward. Alex just got up and walked for the first time in 2 weeks.

[Twunk]

Meant to say thanks friskymare

[takeaway2]

I'm so sorry to read this Twunk. My DS who is 5 was diagnosed with systemic juvenile arthritis last year this time and he was due to start reception. Thankfully because our paed was quick and wrote a letter which got gosh to react very quickly he got the treatment needed. He's on methotrexate and folic acid weekly. I know it's not the same in any way as Alex but we went through 6 weeks of fever, pain, rash, night sweats and weightloss before we got some potential answers. Still a far way from remission if at all but I'm hopeful.

Eatyourcrusts - you need to push for answers. We had 2 weeks of diagnostic tests which involved daily blood tests (nightmare) and GA to do a bone marrow aspiration, heart echoes, ct and MRI scans before they agreed on a diagnosis. And this was all at GOSH. Before that for 6 weeks we were told it was post viral infection from chickenpox, and other random diseases, nothing close to arthritis. Ironically when I put his symptoms in google I got sJIA and lupus. We ended up with the former.

Good luck. And big hugs.

[Twunk]

Oh heavens your poor little boy takeaway - tbh I couldn't see anything online that presented like Alex's illness, except leukaemia - we know our children.

I hope he goes into remission soon.

Alex has had such a good day I feel terrible that he's going to have a whole heap of bad ones

[marriedinwhiteisback]

love and prayers twunk. Oh fuck.

[Quangle]

Twunk, thinking of you this weekend which I know is not the weekend you were imagining for yourselves. It's shocking how many other mums have posted to say "I know what you are going through". I really don't but I am thinking of you and upside down DS (who looks lovely). Must be hard to see him look better and remember that he's not better ...yet.

best wishes for the move to Utrecht. Is he having those chocolate sprinkles in his sandwiches? I have a dutch relative so lived for the times when she brought some of those over .

[takeaway2]

Yes I hope he goes into remission, as does Alex! He's currently snoring next to me (decided to snuggle into bed with me - daddy can move him later when he's back!!). He had a fab year at reception - went to school not knowing how to read or write, now is on stage 8/9 and is writing v well and doing math. He also does tennis, recently got badges for stage 2 swimming (yay he wont drown!!) and gym.

When he started school I had to meet the senco and write an inclusive learning plan for him (wrt contagious illnesses like chicken pox) due to his drug regime. He's been amazing this year. Lets hope for more and a weaning off of drugs soon.

I thank God that they found it so early. And I think and hope it's the same for you and Alex too.

[Twunk]

Well yes it's D-day and I am terrified but trying not to think.

Funny you should mention the chocolate sprinkle sandwiches because his diet is almost 100% that at the moment! He's drinking lots of milk too. Very Dutch! I don't care as long as he has calories.

He saw me cry last night, the nurse asked me how I was.

Oh god it all starts today.

[Twunk]

Wrt school - it is quite normal for children to be held back a year at some point so I will just have Alex start when he is ready as there is usually a range of children's ages in each class. He's not legally obliged to go before he is 5 anyway.

Sheer exhaustion meant I actually slept last night for the first time in days. Still tired though.

[roughtyping]

Oh Twunk. I'm so sorry. Sending lots of positive thoughts for Alex xx

[takeaway2]

Big hugs for today. I think it's great that there's going to be action taken so quickly. I don't know about you but I oscillated between hoping that the drs got it all wrong and hoping that we start on meds that would help him get better ASAP. The not knowing part and no action part is the worst.

Positive thoughts. Xx

[Kveta]

sending positive thoughts your way today.

glad he's on the hagelslag - my sister lives in Den Haag, and is VERY popular with DS when she sends him some!

[CoteDAzur]

Thinking of you and your brave little boy, Twunk.

[Twunk]

Yes I don't know what I expected re chemo! Some sort of glowing room with weird lighting perhaps...!

People keep telling me to be strong. I don't know what that looks like.

Yes takeaway I keep thinking that they might be wrong! I know they're not though.

I wish we didn't have to go somewhere else. It adds another level of fear.

[Trazzletoes]

Twunk big hugs for today. I remember refusing to sign Joe's consent form for chemo and making DH do it instead because I was so scared.

Looking back, chemo is unpleasant, of course, but not really scary after all. Hopefully you will find the same.