Infant neutropenia - experiences?

[Fairfax8]

Hi everyone. I’d really appreciate some insight into experiences you may have had with neutropenia in babies. At 4 weeks old our little boy had a routine blood test for prolonged jaundice which flagged that his neutrophils were low. The doctors kept an eye for a few weeks on his levels but they continued to drop so we are now under hematology at the childrens hospital. We go back once a month to have his bloods taken to see where the levels are at. In the past 2 months, theyve slightly risen but only tiny jumps. We’re due back tomorrow for our next test. So far he has never been ill, fine with his jabs etc… The consultant has said this could be transient (something that resolves itself over time) or something that he will always have (genetical which would require more tests if the levels continue to be low). I’m struggling with this as the consultant has said we have to be careful about mixing with people, busy places etc as he is more prone to infection, but with autumn coming it feels like that’s impossible unless I basically never leave the house. Any stories or advice would be really appreciated. Thank you!

We had this. Found by accident at 6 weeks.

Ongoing monitoring by hematology showed that the leved went up and down over a few months. We were initially told it might resolve on its own by 1. It didn't, so they tested for immune neutropenia and discovered low immune antibodies IgG, IgM and IgE, but no proof it was immune neutropenia. Are looking at some more generic testing now.

Child is now over 3, last round of testing showed immune antibodies 2 of the 3 types are back to normal and at last test so were neutrophils. Being retested September and December and they may discharge her if she is back to normal as they said sometimes grown out of by 4.

We have been lucky. She has never been significantly unwell but has been in and out of hospital a lot whenever temperature reached 38 for checking and on quite a few occasions had 1-2 nights in hospital on iv antibiotics. Worde time was 6 nights in hospital for a cold. Often these were for colds. She has had quite a few scratches etc we needed to get antibiotics for as fingers etc get infected quickly, even if we are really careful. Good luck and hope your child is well.soon.

Ps we don't have in nursery for this reason. We did try parent and child classes when a small baby but had a lot of illness and hospital admissions as a result, so tried to avoid baby groups crawling on floor and licking toys etc. Did however manage to do swimming and more spread out activities without her getting constantly sick. And having friends out to garden play. Also found she didn't get sick as much visiting family she was around a lot or if I met friends out for coffee etc as long as kept a bit if distance.

@Mmr224 thank you for all that info, it’s really helpful and interesting to understand what the doctors process is in finding out cause of neutropenia. I do find it confusing that they wait so long to start further investigation when it can cause your life/and child’s to be affected in terms of not being able to mix, go nursery etc. If you dont mind me asking, what were your childs levels like? Was there a pattern at all or was it quite sporadic? Really glad to hear they are improving and getting normal results now. Fingers crossed for your Sept and Dec meetings!!!

Her levels were literally all over the place. They did decide eventually that they mostly went up when ill, which was good. If they were high when we went in to be checked we could go home on oral antibiotics instead of staying in for the iv form.

It apparently takes quite a while to work out if it is temporary somit does takes a few months at least of repeated tests to see if levels are going up and staying up, and apparently in most cases it does go away on it's own unless a specific genetic issue is found. We found our consultant was really helpful. Our daughter is trialling prophylactic antibiotics 3 x per week just now and has been much less Ill recently, but that was related more to her low immune antibodies that the neutropenia. At one point her level neutrophil level was down a 0.32. It's been up and down a lot.

I hope your baby levels improve soon.

I think normal levels were 3?

That’s good that the 3 weekly antibiotics are working for her. It’s so stressful worrying if they will get poorly so I bet it’s a relief knowing they help keep illness away. Our baby’s levels have been 0.4, 0.49 and 0.6 on last 3 tests so slow increase but again very tiny and consultant said not to get ahead of ourselves as can easily drop back down. Hopefully it’ll resolve itself and isn’t a genetic problem as I know that’s when it starts to get complicated in terms of treatment etc :( thank you for an insight into your experience!!

We had this. Low birth weigh, jaundice and slow weight gain led to a blood test which identified low neutrophils at around 10 weeks and a rush call to a&e. I'm a bit hazy in details and levels as it was a few years ago now. 1 week in hospital and much testing and monitoring as an outpatient. Genetic testing was all negative for us. It took a year of monitoring but levels very gradually retuned to norm and we were fully discharged. Unexplained and very worrying at the time

Thanks for your reply. Such a worrying time! It seems a lot of cases are unexplained which is interesting. If you don’t mind me asking, did you take many precautions in that year that levels were low? We’re getting really vague advice from the consultants which is making us feel like we can’t go anywhere. Obviously don’t be around ill people etc. But we feel like we can’t take our baby to a cafe or to meet friends unless outdoors which is quite hard given that summer is basically over now!

Didn't change a thing. Our child quickly started gaining weight, was hitting all milestones and just didn't ever get ill, if that had been different then that would've changed things for us.

Yeah of course, makes sense. Thank you for sharing your experience!

Any update on this please?

Our daughter also had neutropenia found at 3 weeks during her prolonged jaundice blood test. Her levels 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?

Did your child's continue to go up or not?

She's negative for autoimmune neutropenia.

Thank you!