Low white blood count and neurophil

[grasshopper2000]

Hi just wondering if anyone can help me. My 8 year old daughter has ITP another autoimmune disorder meaning she has virtually no platelets. It looks like she may now have lupus but we are waiting for more tests. In the meantime, I have been told her white blood count and neurophils are low (3.5 and 1.1 respectively), but no one has told us what this means or if I should be worried by these figures. From reading I know that this can mean an increased risk of infection, but what I don't know is, should I be worried by her levels and try to prevent her getting infections or are her levels not that low and I shouldn't worry? I wish the doctor would explain more!

[tremarel]

Aww bless so sorry I bet ur so worried. Sounds like she needs to have lots of tests. She must be bruising so much having the low platelets. They can give her platelets if they are dangerously low. Please don't worry as u can live with them low. As for white cells I'm not too sure but if they were high it would be a sign of infection. I hope you get some answers soon. Stay strong .

I hope you get answers soon

God Bless x

[grasshopper2000 in reply to tremarel]

Thank you for your reply. She has lived with extremely low platelets for nearly 6 years. She nearly always has over 100 bruises and suffers from nose bleeds as well as being extremely fatigued. There is no point giving her platelets as her antibodies destroy them straight away.

We went to hospital on friday as she had a heavy nose bleed that lasted an hour and 15 mins. It was then that we discovered that her white blood count and neurophil was low but we were just told they would let our consultant know but gave mo advise. I'm finding not knowing and a lack of knowledge really hard at the moment.

[tremarel in reply to grasshopper2000]

You really must be at your wits end . I hope & pray that you will get some answers soon.

I'm sure you will but everything seems so difficult & long winded today dealing with the NHS. I've had years of it. Stay strong God Bless u & ur family x

[misty14]

Hi Grasshopper

Sorry to read your daughter is so ill, big worry for you!.

With a low white cell count she is going to be prone to getting infections , maybe extra Vit C could help with this. With regular nosebleeds she could be anaemic which would explain her fatigue so something else to ask about. You must ask the doctors anything your not sure about. I hope you get answers and help soon for her. X

[Barnclown]

Hello grasshopper. Am very much feeling for you & your daughter. it's good you've come here. You've got some great replies and I'm sure more will come in

It's good you realise that diagnosis is a process and can take some time, involving a lot of patience from both you and your medics as you all go through the stages involved in studying an individual case of immune dysfunction. Often there are several overlapping conditions involved.

As medics gather enough info about an individual's particular case, they'll feel more confident about trialing & monitoring treatments. Each trial adds more info to the mix about the immune issues involved, I'm only 4 years into this process, and doing reasonably well although immunology investigations continue. Like your daughter, I have complex early onset WBC deficiencies that existed prior to beginning treatment on immunosuppressives for lupus. There are several types of white blood cell, but my understanding is that any deficiency, due to which ever cause, can make you more vulnerable to infection. So yes, you should be alert to signs of infection, and take reasonable precautions. Have you discussed immunisations/vaccinations with your daughter's medics? Am imagining they'll be avoiding live vaccines.

Most recently, thanks to immunology, I've learned that it is KEY to get your GP into supporting you in organising lab samples before antibiotic treatment begins. Perhaps your medics have explained this already, but my medics took years to help me follow a lab samples protocol for all my types of infection.. Lab test results on these samples can be invaluable in better understanding the specific nature of an individual's immune dysfunction by identifying the actual types of bacteria or fungus etc involved. Immunology told me to get my GP to give me sampling kits to keep at home. If you do suspect an infection is coming on, I suggest you remind your GP about these WBC etc concerns and ask for lab samples to be taken + tested. Apologies (and well done) if you're doing this already

Sending you every best wish

Hope you'll let us know how you get on

🍀🌻 Coco

[nea29]

I visited the doctors two years ago for fatigue. Blood work came back and low white blood cells. Then, i went on vacation. I live in washington state. I went to visit family in Alabama. When i returned my lab work showed it when back to normal. I was on visit getting proper rest, lots of sun and reduced stress. A few months later my white blood cells decreased again. My group health doctor didnt understand what was going on. Low white blood cells, high SED rate and Positive Ana , but my doctor was sure it wasnt lupus. 6 months ago, i started going to a provide doctors office, he explained that my previous doctor didnt do all the needed blood work. He did an Anti- Sm it was positve and month later i was diagnosed with lupus. My advice for you is dont listen to all doctors, they make mistakes too and some are burned out. Get second opinions always. You also may want to try having your daughter take vit D and get proper sleep. Sleep builds the immune system. Having low white blood cells weaken your immune system and put you in high risk for infection. So, washing hands frequently is a must. Good luck to your family.

[Koko12]

I can only imagine how worried and possibly scared you may feel, especially not knowing ... Some helpful suggestions above. I also find it helpful to get copies of all blood results, and over time starting to understand what is a) normal for me, b) can also make my own checks on what certain counts mean, and c) when I am not sure what something means, i can go back to the doctor and ask clarifying questions. When info is given in a rush or during a consultation, i can't always retain all the important details to make sense of it, and having my own copies of results gives me time to try and understand the illness better. I hope you get helpful results. Also, when multiple specialists, hospitals and gps get involved, make sure you have copies of all info and understand it, as info often gets loss when multiple people involved. Thinking of you, and hope you get answers very very soon. X

[Debra60]

Hi, I've had this also, my levels were pretty much the same. It didn't make me feel unwell but the issue is, if you catch any viruses, infections etc. you don't have the ability to fight them off, as my Doc said, it's not catching anything that's the issue, it's dealing with it! Mine was caused by medication (Mycophenolate) which once stopped seemed to correct itself so my levels are much better now however, I have Lupus (SLE) which can also cause this so I would ask your Doc for more information.

During this time though I tried to keep away from anyone who was ill, very difficult but you have to do your best, I used sanitising hand gel, anticeptic cleaners at home etc. etc. and managed to avoid illnesss. Speak to your Doc, good luck!

[charlie007]

Hi

I am sure you must be very worried for your little girl.I have low platelets and low white blood cell count often dropping just below one,I am monitored on a regular basis and just told to avoid people with coughs and colds,also was told to be careful with salad bar as they harbor bacteria and take aways.I also get the flu vaccine every year.In all honesty I try to be careful but dont get obsessed as you have to live.Maybe give her a hand sanitizer you would know,if she would use it,or maybe it might be too much for her but you would be the best judge of that.I hope this is a help.

[Freckle1000]

I was down to 3.0 white blood cell count from too much immunosuppression for Lupus.

At that level it was very close to impossible for me to fight infection. I was only barely able to, but being barely able was enough. Very unpleasant and a bit scary, but I got there in the end.

Having said this, I didn't receive adequate care from my Rheumatologist and I'm still pretty ignorant about the possible treatments for infection when you are low on white blood cells.

* I would very much seek advice & listen to barnclown as she has a great deal knowledge & experience with this kind of thing and she's always really helpful towards everyone. In short: she's pretty wonderful.

But from my slightly freaky subjective experience, at least in the short term - I would advise you to be a little obsessive about keeping your daughter away from all possible sources of infection until the Doctors start sorting it all out properly.

Sounds like they may need a bit of a push.

Don't feel shy about obsessively harrassing them into doing their job.

Make sure you end up with a good team of specialists - and then harass them.

Most lupus people are familiar with having to do this.

I'm sure the Drs will be able to figure out what to do. They can be pretty savy 'once they get going'.

x

[Jennie_103]

My neutrophil levels always come out "low" but the docs only seemed to get at all stressed when I got down to 0.7.... Mainly for me it means I know that should I get a routine infection, like a UTI or tonsillitis, I'm more likely to need antibiotics than your average person. That's how it was explained to me. Apparently people with Lupus/similar (I'm MCTD officially but very similar) often have low neutrophils, they just keep an eye on it so they get to know what is normal for you. I think taking hydroxychloriquine can also lower it but I'm not sure.

I think be more aware of infection, and a bit extra care round hand washing etc is probably enough. Obviously avoiding anyone with a streaming cold is probably also a good idea!

Hope it all goes well,

Jennie

[Paul_Howard Partner LUPUS UK]

Hi grasshopper2000,

I'm sorry to hear that your daughter is unwell. As we are not medically trained, we cannot comment on blood test results. You are correct that low white blood count and low neutrophils would leave your daughter more prone to infection. Perhaps you could discuss with her GP what the best cause of action would be at this point?

Low neutrophils can be a symptom of lupus or other autoimmune conditions such as rheumatoid arthritis or crohn's disease. This can happen if the body's immune system is targeting neutrophils for destruction.

Please let me know if you need more information about lupus. We have a free information pack that I would be happy to send. Just email me at [e-mail] or send me a private message with your name and address.

[jeanie94]

Ah that's how I started ! I was heading into year 8 at high school.

Its been a year, hoping everything is going ok!?