6 week old low neutrophils

[mincepielife]

Hi all, posting here for traffic as posted in children’s health and got no responses

My lo is almost 6 weeks old. Had a jaundice blood check 2 weeks ago and came back he had low neutrophils. Was told not to worry, probably a one off and they will retest in 2 weeks. Had the retest today and results were even lower 😔
Been told we’ll need another test in 2 weeks then if it’s still low will be referred to a haematologist at the children’s hospital.
Anyone experienced this? I’m worried sick 😭

Bump

That is tough. Do you know how long the wait is? I would be pushing for a referral right now, then if her numbers come back up you can cancel. Has the jaundice resolved? Is she feeding well?

Hi @SeaToSki thanks for your reply.

No idea about the wait, have rang this morning to ask if we need to wait for another test before referral and got told they need to establish a pattern before they refer us on. Hoping they’ll see us quickly I’d we do need to be referred.

His jaundice has gone and he feeds really well x

So, I don't know if this helps but DS had this when he was v small, he was born with a low haemoglobin and they didn't know why - there were concerns he'd lost blood during birth somehow, he then developed neutropenia around his 8 week jabs, it resolved on its own but in the meantime we were referred to a haematologist at local children's hospital who just monitored, all of it resolved without intervention - he was given some folic acid to help with the anaemia but that's it.

Sending a handhold, it is scary when they're so dinky. Mine is now a strapping four year old. x

If they dont have any other worrying symptoms its probably a blip, but definitely get on the haemotologists radar and have LO followed properly. Keep an eye out for anything out of the ordinary write it down and and mention it at the consultants appointment. Also get a print out of all the sets of blood tests results and take them with you in case they dont have copies.

@feliznavidad2 thank you for your story, it’s nice to hear a positive outcome- everything else I’ve come across seems to be worst came scenario! 😣 glad to hear your ds was ok.
@SeaToSki thank you for the advice, and the tip to take the blood test results I will definitely do that

Hi all ,

I’m posting as I’m just so worried about my little one and wondering if anyone has had experience of this.

We had a prolonged jaundice test yesterday he is ebf but it’s being hanging around he is 28 days old. It was randomly found that his wcc / neutrophils were low at 0.8 I was told not to be over concerned and I will need to go back in 2 weeks for repeat bloods

He is feeding well gaining weight poos wees all normal.

Im so worried as this is not what I was expecting and can’t stop googling and thinking the absolute worst. He is just so tiny.

Bumping this to see how others got on.

Thanks 🙏

How did you get on with this. Currently waiting on the repeat test for my daughter and worried sick

DS was diagnosed with neutropenia at about 6 weeks old after having prolonged jaundice. We had repeated tests at the hospital which came back the same and were eventually referred to a specialist. We kept attending regularly for checks and he took antibiotics as a precaution the whole time but, as he wasn't unwell, they chose not to take any additional action. He eventually grew out of it at about 8 months and he's now 8 year old. The consultant did say that sometimes it happens and it may be more common than we know, as babies' blood isn't routinely tested.

Thanks so much for your reply. It’s so worrying when they are so young. Glad you have a strapping 8 year old now x

Best of luck, hope everything is ok

Hi all guess I’m looking for any similar situations reassurance ?
my 17 month old baby has been at nursery about 6 months and seems to always be ill whether it’s a cold or ear or chest throat infection etc . Gp has given antibiotics each time and she’s always seemed “fine” I only really noticed by coughing or her not eating that she’s ill she doesn’t actually look ill each time apart from one or two days temp. Never been hospitalised never anything serious. But recently they become more baxk to back and really taking its toll on me especially the night time antibiotics and time off work! I finally said enough and saw a private peads doctor who did bloods and discovered her neutrophils are very low and this has had me in bits!! He did say it’s likely to be due to these back to back viruses but also can be autoimmune or born with these low neutrophils but he won’t know till he does any blood test in 4-6 weeks and put us on this preventive antibiotics for 3 months! And ordered to stay off nursery’s and playgroups!
does anyone have any experience of this low neurotrophil? I probably wouldn’t have known unless I had seen this doctor and kept going on as normal. Have I been overly paranoid? The gp kept saying to me each time it’s normal nothing wrong it’s normal for new nursery starters etc etc I’m now thinking I shouldn’t have seen the peads doctor as I’ve “ created “ a problem now

Hi everyone. How did everyone's dc get on? X

Hello! Thankfully was temporary due to infections and antibiotics we had a 6 weekend lockdown where we couldn’t go nursery etc to she had no infections and the blood test showed it had come back up again’ :)
You okay xxx

@Melonportal This is a really similar situation I’m in currently with our 4 month old. If you don’t mind me asking, did your DS levels go up each time they were checked or was it sporadic for the 8 months he had low levels? And then all of a sudden were they at normal levels? I’d really appreciate any information!! We’re due back with consultants tomorrow for more bloods, going once a month atm. Thank you!

@Melonportal sorry this was for you x

Ah, it's so stressful, isn't it. We went quite regularly and the number might have varied a little, but it was always very low. Then, one time we went and it was normal. Nothing obvious had changed and the doctor didn't really know why it had happened.

DS was monitored for a little while to ensure the number stayed high, but it was fine after that.

If I remember, they tested him for pretty much all the illnesses they could think of. It was worrying but also quite reassuring as they were able to rule them all out.

@Melonportal thank you so much for your reply! It is really stressful. By any chance, do you remember what the levels were? Understand it was 8 years ago now so no worries if you can’t remember. So interesting that they were low for that amount of time then absolutely fine?! It’s honestly a minefield. Really hoping we have a similar outcome. Our baby hasn’t been poorly whatsoever yet, but we have been quite careful with mixing as he’s still so young. Did you take any precautions when levels were low? It’s hard to know what to do because I want him to be safe but at the same time dont want him to be cooped up inside 24/7!

Sorry, I don't remember the exactly number but it was extremely low. He was never actually unwell during that period, which was why it was so baffling. He took long term antibiotics and we avoided anyone with colds etc. but otherwise just carried on as normal. I hope you get the same result.

So baffling but great that it resolved itself after those months. I hope for the same. Thank you again for some insight into your experience!

What was the update with this please? My premature IUGR baby was found to have low neutrophils at 3 weeks during a prolonged jaundice blood test. Her numbers have been gradually rising since 4 months and her last two results have been normal though one of those was a response to vaccines and we think she had a cold most recently.

She is negative for autoimmune neutropenia.

Hiya, saw your message and thought it was worth responding with a bit of insight from our experience. Our son (17 months) has had low neutrophils since birth, discovered from a prolonged jaundice test as you similarly mention. We have been under a consultant ever since but all tests negative incl autoimmune and congenital neutropenia. Our consultant has explained that this may be much more common than we know as they do not routinely test babies blood. I do also remember her saying that premature birth weight can be a factor in the neutrophils needing to “catch up” and can take a while. Our baby was only 10 days early but no reason this couldnt have had an effect. He has rarely suffered with colds flus etc and has now had his first normal result and doctors aren’t concerned. Hope this gives you some confidence and wishing you the best!

Thank you! We're so confused at the moment as to whether she is outgrowing it or not! In her last blood test we didn't know if she had a very mild cold as she had been quite snotty and my partner had an awful cold, but her neutrophils were 1.75, so they were normal though not insanely high. 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. Her last definite healthy neutrophil reading was 0.7 and her highest was just before this normal reading after her vaccines and that was 4.54!

The hemotologist currently sees no reason to do genetic testing despite the negative autoimmune as he said the fact that she can mount responses shows her bone marrow does work and I think as she's usually moderate levels he's not concerned! Plus he said that usually other characteristics show up with genetic issues and she had none of the characteristics when he checked her x

Thank you for the hopeful experience! X

No problem. Yes our LO levels always spike up to normal when he’s been ill or post vaccinations which does show a healthy response in bone marrow as you say. The team of consultants our little boy is under at Manchester are incredible and have been very honest and explained that sometimes there is just no explanation for these things and they simply grow out of it. The doctors said similar to us about usually identifying signs of a genetic problem in terms of development etc. Also, I know it feels impossible to not get obsessed with the levels because I certainly was, but I wish someone told me not to focus too much on them if all other signs are good as they can go up and down over and over again until they level out and stabilise. I would get so upset when they were rising for a few months (still never above 1) then drop back down, but my LO was always well in himself and never has infections which again shows bone marrow response is there. He has had one normal blood result now, and we need 1 more before being discharged, but if it drops down again I wont worry as like I say it has fluctuated so much and he is developing beautifully with absolutely no issues. Really hope you can get some comfort / confidence from doctors as they dont seem concerned from what youve said!