Child regularly being tested for signs leukaemia

[wobblymum1]

My dd6 is prone to picking up pretty much everything-
colds, coughs but also the bigger ones- strep A, tonsillitis, scarlet fever (twice), bad gastro bugs, you get the picture.
when She is poorly she gets very high fevers (around 40) and generally ends up in a&e as can’t get it down or she’s dehydrated.
the last few times the dr has gently spoken about the tests they are
doing are to exclude (among many other things) leukaemia due to how pale she is, Thin and of course the high fever with no obvious cause at the
time for what causes it.
i wait with time flashing before my eyes Trying not to let her see I’m scared until they come in and say bloods ok, it’s a uti/tonsillitis /etc.

but I’m now almost believing it could be. Maybe from
all the trauma of them treating her so seriously when she is in. I watch
her like a hawk for any signs of a fever and if she mentions a random sore tummy or sore head I actually properly panic, whereas with her brother I don’t give it a second thought and assume he’s just dehydrated/ eaten too fast, no panic at all.

I guess I’m asking for some
fellow mama advice what to do. I’m aware this health anxiety is way out of control but I cant
help being so aware as she is very thin and pale and picks up lots of bugs, but has been tested which came back ok and has had negative Coeliac screens. I just want to get back to enjoying her and not feeling this panic when she gets I’ll which is so often ☹️

The reassuring thing in this story is that on all of these occasions she did get better. Uncertainty is hard on everybody. Do you get the impression from the team looking after her that they think it's likely something underlying is going on, or unlikely?

Regarding leukaemia specifically - the common types in children tend to be less and less subtle as time goes on, so a long story is on the whole reassuring.

When my DD presented similarly (thin, pale, random fevers, no energy) it turned out to be Crohn's disease. To be fair she also had diarrhea. Has your dd had a fecal calprotectin test? My DD was also tested for coeliac (negative) but they did not do calprotectin at the same time, which would have shown inflammation in her gut.

I became very unwell myself with how worried I was about her. I, too, thought it was leukemia or other cancer. She only had to say "I'm tired" and I would get a wave of cold fear up my spine and would be unable to eat. I lost quite a bit of weight. I ended up going to the doctor and getting anxiety meds as I told the GP I was very worried about transmittting my horrendous health anxiety to my DD.

Let us know how she gets on, OP.

Thank you for sharing this with me, I can’t tell
you how much it means to have you understand. I can’t even sleep tonight worried she might be unwell as like you she just has to say she’s tired or feels a bit weird and I go into full blown panic mode. It’s a fairly joyless way of living for me just now ☹️
she’s had a coeliac blood screen last year? which was negative. She often does have diahhrea, not every day but some. Is there a difference with chrons? Thank you, again xx

Hi there, yes Crohn's is not the same as coeliac. Coeliac is an autoimmune response to gluten and by not eating gluten the gut recovers. Apart from also being an autoimmune condition that affects the intestines, Crohn's is nothing to do with gluten. The intestines (or anywhere from mouth to anus, actually) get areas of inflammation which prevent food being absorbed so the person is malnourished, usually a bit anaemic, pale and thin. There's a Crohn's "look" I recognise now - grey skin and brown circles under the eyes.

The first test for Crohn's is usually a poo test, they send it off to check for a protein called calprotectin that gets raised in inflammatory bowel disease. Might be worth asking your gp if they might consider this test? If it comes back low, at least you know you can rule out Crohn's and other inflammatory bowel disease?

Attaching a pic of my DD when she was diagnosed. See her hair is brittle and thin, her eyes have dark circles, and her skin pale. Plus she's so skinny.

..and now, 18 months later, 40lb heavier...

Hi @wobblymum1 your post has resonated with me alot. My ds has similar symptoms. When he has a fever it's a really high fever. He picks up so many viruses - feels like he's constantly poorly. He often has random aches and pains.

I have terrible health anxiety and really don't cope very well when he's ill. I'm constantly looking st worst case scenarios.how did things go for your daughter? I hope you found a cause x