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Original poster

Unexplained medical emergency- severe anaemia in toddler- anyone else experienced?

27 replies

Antiochene · 21/12/2022 00:51

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!)

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SofiaAmes · 21/12/2022 00:54

Presumably they tested for mild Hemophilia.

Original poster

Antiochene · 21/12/2022 01:02

I'll have to get his notes from the hospital out again and double check, thank you!

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Dello · 21/12/2022 01:06

This wasn’t my child but yes a 18 month old with Hb 43 no transfusion, a whole lot less tests, oral iron, no problems since (about 4 years ago). Attributed to high level milk/ no iron in diet.

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Original poster

Antiochene · 21/12/2022 01:08

Thank you for the reply! His iron levels were at the higher end of the range for his age and all the other nutritional markers were ok too so they were confident it wasn't caused by diet (thankfully he's not really a picky eater and loves eggs!)

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mackthepony · 21/12/2022 01:13

I'd push for testing in the UK. You need to know what it is. It sounds very serious.

Original poster

Antiochene · 21/12/2022 06:24

The GP did a few follow up bloods then said they wouldn't do any more unless he had symptoms of anaemia again.

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Blackeyesbluetears · 21/12/2022 06:25

I'd push for coeliac testing if he's still tired

greenacrylicpaint · 21/12/2022 06:40

anaemia is a symptom - never the disease

common reasons for small children to become anaemic:

shit diet or not giving a supplement if child has a restricted diet
malabsorbtion (coeliac disease, ibd)
illness (malaria?)
blood disorders (haemophilia, leukaemia)

ask dh to ask for those and have him write down the answers if possible.

I agree with pp, can you get dc seen in an english soeaking country? or hire a medical translator to a meeting with dc dr at hospital?

NewToWoo · 21/12/2022 07:04

I know a child who had a milk allergy which caused severe anaemia. Have you tested for this?

forlornlorna1 · 21/12/2022 07:47

Had the same with my dd when she was two. Hers was a bowel problem and she had/has allergies. A form of colitis.

Anyway we were referred to a dietitian who told us the main reason they see children with unexplained anaemia is usually from drinking too much cows milk as it inhibits the absorption of iron and vegetarian and vegan diets.

Original poster

Antiochene · 21/12/2022 08:35

Thank you for this. His diet is and was good, he tested negative for coeliac, no illness found, no signs of leukaemia, I think haemophilia is the only one they didn't test. I have his notes but there's just no context around all the tests and what they meant. We've been back in the UK for a while now and I took him to the GP ASAP when we got back but they just say to bring him back if he became symptomatic again. Really the post-viral anaemia was the only idea left, but they tested for apparently all the main viruses which can do this, and didn't find any of them, so I don't know what to watch out for.

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RunLolaRun102 · 21/12/2022 08:58

Were iron levels tested or just hb levels? I have thalessemia trait and my normal, healthy, hb levels are around 6-8ish & my levels in childhood were lower. Iron normal. You should get him tested - the NHS currently automatically offers this to ‘at risk’ communities but if you’re mixed race or come from a mixed race heritage it might not be obvious.

Original poster

Antiochene · 21/12/2022 09:10

I have his ferritin levels from his time in hospital, assuming that's the only iron you can test for(?) they were really good, highest end of the range. Since the transfusion his haemoglobin has also been really good in every single checkup. My husband is white European so I'm not sure if that background would be at risk. It's just such a mystery, the haematologist was even asking if they definitely did the blood draw properly because she couldn't find any cause for it at all (but we also had the results from the paediatrician and they corroborated the level).

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OhYouBadBadKitten · 21/12/2022 09:16

If he was limping was it from hip pain? That could point to transient synovitis, which is a pretty common toddler thing when they have a virus.

Original poster

Antiochene · 21/12/2022 09:46

I came across this while googling to try to figure out what was going on! It might have been part of it too. The x-ray of his hip was fine.

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purser25 · 21/12/2022 10:17

Interesting my friend and my Mother were suddenly very anaemic and needed blood transfusion lots of tests but no cause found could possibly have been a post viral symptom very scary at the time.

Thelonelychicken · 21/12/2022 10:27

My mum had this. Her bloods came back not celiac but she went for further tests and had a test done on her intestine and stomach then that came back as celiac she's been fine since

Original poster

Antiochene · 21/12/2022 10:36

Interesting! I've never yet heard of anyone in a similar boat. Reassuring that they also concluded probably a post-viral thing.

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Original poster

Antiochene · 21/12/2022 10:37

This is definitely something to look into, especially as he had struggled to put on weight, thank you. Do you know how she got the tests on her stomach done? Was it private or NHS?

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Thelonelychicken · 21/12/2022 12:25

It was nhs. Because she just couldn't keep the iron up.

Fishfinger7 · 21/12/2022 12:38

My DD had Transient Erthyroblastopenia of Childhood, became slowly very anaemic (Hb less than 4), blood transfusion and made a full recovery. Thought to be due to a virus affecting the red blood cell production of the bone marrow. Was also the worst time of my life, but she’s been well ever since. Best wishes to you and your family.

Original poster

Antiochene · 21/12/2022 13:54

Thank you so much for your reply, it actually means so much to hear that. How long ago was this? My mind keeps running on the anaemia every time he gets a cold or something in case it was post-viral and in case any other virus could trigger it. I think it took a while to sink in how sick he'd been because he had seemed so close to normal before being hospitalised, but months have gone by and I can't get over how close we were to possibly losing him. Best wishes to you all too 💞💞

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FadedRed · 21/12/2022 14:08

There’s another rare condition that manifests as anaemia in this age group called Hereditary Spherocytosis. A relative developed this at the age of 4, he had to have a splenectomy but was fine after that and is now in his fifties living a normal life.

FadedRed · 21/12/2022 14:09

sorry I meant to add this link on my previous post:
medlineplus.gov/genetics/condition/hereditary-spherocytosis/#synonyms

Fishfinger7 · 21/12/2022 20:28

@Antiochene My child had this aged 3 and is now 11, no further issues whatsoever, I hope it is the same for your child. I understand your worries, it took me several months to process what had happened and recover emotionally- much longer than it took my DD to recover and forget all about it!

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