Any doctors about? Neutropenia.

[Spidergirl2015]

We've been a hospital for a few nights with vomitting, but blood tests picked up neutropenia. Levels have been 0.17, 0 and 0.05 on each test. Virus screens have come back negative. We have a repeat in 2 weeks. Does anyone know what the cause is. I'd rather know the likihood of what isn't is but docs keep brushing it off. Saying wait to see consultant in 3 weeks but I can't wait that long! I'd rather know even if the likihood is something terrible.

Can anyone give any insight?

I'm not a Dr but a MH nurse so my experience of neutropenia in service users was in iatrogenic (caused by medical treatment, usually an anti - psychotic Clozapine in the cases I've experienced.

If not iatrogenic or a related to infection - there can be many causes and some people have congenital neutropenia.

Don't Google it - I don't think that ever helps anxiety!. Three weeks seems a long time but try to adopt the attitude that it is in the hands of expert professionals and you'll have some clarity before the end of the month. Easy for me to say I know but I've seen far too many consult Dr Google and go into anxiety overdrive which isn't helpful.

Thank you. I just feel so out of control, I just want to have some idea of what they are thinking. What sort of things they may be looking for and what sort of tests they might perform next. Even when we were in hospital I felt out of control. They just suddenly appear and you have no time to think about the tests treatment they are recommending as I had no warning.

I understand all that. But if you Google you would understandably go to the worse case scenario because it's your child and you're frightened.

That's not an insight into what they may be thinking - it's an insight into what you are thinking. They might well be thinking something entirely different!.

The fact you've been offered an appointment in a few weeks suggests that it's not an immediately sinister situation.

So try to go with that. They're the experts and they're going to figure out what is going on.

Thank you. I think I need to relax to reduce my anxiety!

How old is your little one? I know it must be terrifying but if it was very serious, they wouldn't wait 3 weeks. Hope that gives you even a tiny bit of reassurance. All the best.

My DS was premature and had prolonged jaundice. That eventually sorted itself out but, while it was being monitored, they picked up neutropenia. Initially he had tests for all the main causes (thankfully they didn't tell me what they were) which came back negative. We were referred to a consultant immunologist who investigated thoroughly over period of around 6 months. During that time he took regular antibiotics because his immune system was likely to be compromised, but thankfully never became ill.

Eventually his levels reached normal on their own and he was discharged. It was a very worrying time though. Unfortunately I did Google and caused myself lots of unnecessary concern.

Thanks, he's 19 months. When I google other people's stories I can't find anyone with readings as low unless they've had chemo, which he hasn't. I think I'm too impatient!

Apart from leukaemia does anyone know what other things they look for?

There can be a huge number of causes. After checking for a large number of conditions, our consultant started looking at genetic factors- it can be more common in people with certain ethnic backgrounds or from different parts of the world (sorry I can't remember any more specifically than that). Also it can be more common in children who have parents who are related.

I couldn't find much information about it at the time, but our consultant said that she sees a few children every day with neutropenia and it usually corrects itself without treatment. She also said that it may be more common than we know but, as babies are not routinely blood tested for it, it's not picked up.

Please try not to worry. The worst part for us was the regular blood testing, but otherwise he was fine.

I'm not a doctor and I not sure if this is the same but my son was in hospital when he was 4 as he limping. They took blood and his white count was low. We had to go back after 2 weeks to get it re tested. I was worried about something serious but the doctor explained that a virus will cause the White cell count to increase but it will often then fall below normal levels before going back to normal.

I was diagnosed with neutropenia when I was 16 and quite underweight/malnourished. I don't know if that's relevant to your situation OP. It's probably not but I thought I'd post anyway.My neutropenia rectified itself when I reached a healthier wright and my body was fueled appropriately.

I'm not a doctor, but just to say that a course of penicillin made my DD neutropenic. The situation reversed a week or so after the end of the course. Could this be relevant?

He did start antibiotics but the 0.17 reading was before they started. They could of dropped more because of them maybe.

My DS was diagnosed with autoimmune neutropenia when the gp asked for a blood test as he thought he looked a bit pale when we went about something unrelated. He hadn't been unwell so it was a shock when the gp rang us to ask us to take him to the hospital that day. When they have neutropenia it means they may have trouble fighting bacterial infections but if other blood test results are normal they can fight viral infections as normal. We spent about a year having tests to check levels every few months and had to go to hospital if he had a temperature above 38 where they would check neutrophil levels and give I.V. antibiotics if too low in case it was a sign of a bacterial infection. Eventually they decided he had the autoimmune form and his body had got carried away fighting off an earlier infection and then started killing off his neutrophils. This was good news as it meant his body was able to produce neutrophils normally and he would produce more if he got an infection. They generally grow out of this type about the age of 2 (which he did) but it was rather stressful worrying every time he got a temperature. I hope you get an answer soon

Thank you for your response. How long did it take to get a diagnosis? Is there any particular test that they did to give this diagnosis?

Hi, I just came across this thread and wondered what happened with you. My son has autoimmune neutropenia (anti bodies found in blood test). He often gets readings of 0.1