Hi all .. I'm so nervous to post because this was the worst experience of my life so please be gentle with any responses 🙏 long post but would love to hear any similar experiences to try to move on, or any similar experiences where you did figure out what caused it?
At the start of the year my husband, our toddler and I were abroad in a country where only my husband speaks the language. The toddler "R" is normally VERY high energy, and I noticed he wasn't himself - not running away in the park, wanting to lie down, slight limp, etc, but nothing very out of the ordinary. I had to point out the changes to my husband for him to notice- toddler was still full of fun and chatting and playing.
I took him to a local paediatrician who noticed he was very pale (to my shame I hadn't noticed- looking back at photos it had come on slowly). The doctor sent us to a&e for a blood test and x-ray. Turned out toddler had a haemoglobin level of 4 (test was done twice... Definitely 4) and was immediately admitted for a transfusion.
He was kept in the local teaching hospital for 5 days and they tested everything they could think of. Bone marrow, viral infections, genetics (he had also been struggling to put on weight), nutrition, absolutely everything they could think of, and no clues about what caused it.
My husband stayed with him on the ward all 5 days, but he struggled to translate
his conversation with the doctors, so I feel like I barely understand what they investigated. More so, I'm struggling with not knowing what caused it. "R" has had many many follow up bloods (never any problems) and we're almost a year on from the transfusion but still, when he tells me he's "tired", it's hard not to lose it and wonder if it's coming back again.
As far as I can tell the haematologists' best guess is that it was a post viral thing but that the virus didn't get picked up in tests.
I would love to be able to process this at last because it's playing on my mind and I'm afraid my boy could get that sick again. I would really appreciate hearing jf anyone else's child ever had a similar "mystery" anaemia, and what your experiences and follow-on were like.
(I haven't used Mumsnet before so sorry if I did something wrong!)