5 month old neutropenic child - advice needed!

[Beth98]

Hi all, I really need guidance/advice and experiences if possible?

My daughter's neutropenia was found at 3 weeks old from a prolonged jaundice screening and her results so far have been as follows:

⁃	0.63 - moderate neutropenia
⁃	0.50 - cut off for moderate neutropenia
⁃	0.66 - moderate neutropenia 
⁃	0.47 - severe neutropenia
⁃	0.52 - back to moderate neutropenia
⁃	0.7 - moderate neutropenia
⁃	4.54 - mounted an amazing response to her vaccines! 
⁃	1.75 - did have a cold, but no infection markers? 

So On Monday my daughter had a blood test following an excellent mounted response of 4.54 following her third set of vaccinations. In this blood test on Monday she had a snotty nose and we wondered if she had caught a pretty mild version of my partner‘s cold though she is also teething, so it’s difficult!

I was able to see the results today as opposed to just the phone call I had on Monday. Her neutrophils were 1.75, so they were normal. Her platelets were slightly higher than normal, her WBC was 0.01 lower than normal, her hemoglobin was 117 which was normal, her lymphocytes were slightly low and as far as I know everything else was normal. The doctor on the phone on Monday said that no infection markers were present either.

The GP has ordered repeat bloods to get a definite healthy reading of her neutrophils. I’ve phoned for a follow up from her hemotologist to check if he wants this to happen or wants something else as the next steps.

My questions are:

1. For someone with a lot of experience with blood tests and levels, do these seem like bloods that would be likened to a viral infection or do they seem like healthy bloods?
2. Is it likely that her neutrophils were normal as she’s stabilising or because she had a mounted response?

She has a slight snotty nose, but she’s pretty much over it all today and the same could be said yesterday and Wednesday!

She never got a fever, but her temp was higher at points though that could be teething too.

She has had testing for autoimmune neutropenia and that was negative. The hemotologist currently sees no reason to do genetic testing as she's showing no signs of issues and she's mainly moderate levels.

Any advice would be appreciated.. I know no one can say with certainty, but experiences and guidance is welcomed! 😊

On the whole, if there has been a good rise into at least normal range even only sometimes, it's quite reassuring news (the bone marrow has demonstrated the ability to do something). Particularly if testing negative for antibodies. As well as the numbers it's significant to know if the child is being as if they functionally have an immune system problem - not growing, persistent or unusual infections especially growing specific bacteria. Obviously it's tricky with a baby who is only small so you don't have a long data series, but it seems from the story and medics' response that there aren't features of this, good news again.

Beyond that, I'd say the haematologists and immunologists aren't too interested in issuing ruling on blood tests individually so I'm not sure as precise an answer as you'd like is possible.

Thanks for this - it’s really insightful! To help me understand better, why is it reassuring particularly if testing negative for antibodies? She is being functionally as if she has an immune system luckily! She was born growth restricted at 3lbs 12oz, but since then she’s put on very nearly 10lbs in just under 6 months, so she’s growing exceptionally well. She doesn’t have other blood issues as far as we know of and I know neutropenia often comes hand in hand with other blood issues when it’s genetic. She has never had persistent or unusual bacterial infections (never had a bacterial infection touch wood!) - would this likely be why they don’t want to do genetic testing at the moment?

That’s fine I thought that would probably be the case. I’m just waiting to hear back from the hemotologist for what they want to do next! There has been the wondering as to whether she is growing out of it as her numbers have been slowly rising and she’s mounted excellent responses. I do wonder whether hers has been a longer case of neonatal neutropenia caused by my preeclampsia and her growth restriction, but we will likely never know unless they ever do genetic testing to rule out that as a cause! I’ve also read that the autoimmune test can cause a lot of false negatives too.