any blood people on the board to reassure me in any way......feeling sick with worry.

[psychomum5]

DD3 is right now in the midst of blood tests for working out the pattern for cyclical nuetropenia.

it has been proven now, and the treatment for her for the next 4mths will be permanent (sp?) antibiotics until we see the haemotology dept at southampton hospital (referral went a bit screwy so not seen anyone yet, altho I have spoken and emailed them a few times now).

anyway........today got given the next lot of results, she is dipping down to 1.2 now, so not major but low enough.

problem is that she has now has thrown up high eosinophils too (not major either, but high enough for the nurses to comment and scare me).

what do they mean (I confess to googling, but it has now scared with auto immune diseases), and specifically, what could it mean coupled with the cyclical neutropenia.

help.............please

anyone?? please

Oh, poor you and DD3.
sounds like a worrying time.

I wish I could be of help with medical implications etc, but can't, sorry. Hope someone else who can comes along soon.

thankyou.

was beginning to think no-one cared..........

very grateful

What are they looking for?I am not sure about those blood results sorry but I know a bit about auto immune diseases

ok - if her results are changing then you need to speak to your GP and ask him to explain it

if you have been in touch with the haeamatology dept already then can you ask them?

also, step away from google

Has she had a virus recently that could have altered her White blood count?

No advice, but please please don't google!!!!

DS has severe anaemia and they aren't quite sure why... He also is dairy intolerant which seems to be helping his weight.

when my head was spinning, I called my GP to ask for the 'Idiot's Guide to Anaemia' and what-the-hell-does-this-mean....

i found the only way to get answers from paeds consultants was to phrase the questions very simply as if talking to a child, add a faint note of hysteria to your voice and a wild look to your eye and stand between them and the exit

no idea about the bloods i'm afraid, hope someone who does know pops along soon

well, at the moment they have been (and has proven to be) cyclical nuetropenia.

she went thru many bloods last year (twice weekly for 8wks), which did show the pattern, and now (after a mix-up with the referral etc - we are currently in the midst of 3 times a week for 6 wks!) they are looking for the deepest dip in the nuetrophil count to work out what strength antibiotic she needs.

but this morning when they were giving me the nuetrophil counts they threw up the eosinophils being too high, scared me, then tried to say it was nothing (assuming that my white face was the reason they tried to then take it back!).

I was just wondering if it would have any impact on the cyclical nuetropenia, or if it could indicate something else entirely now......she has never been well all her life, and the docs are confused by her (she gets ill regularly with what for most children is a minor thing, for her tho it hits her badly).

I am currently waiting for a reply for yesterdays chat with the secretary.......the consultant is on leave this week and so I cannot talk to him, and getting an appointment with my GP is hard if for a proper appointment.

sorry I am not clear, but I am just fretting now, and obviously google was a stupid place to go

ilovemydog.... aenemia can be linked to wheat/gluten intolerances and they in turn often go hand in hand with dairy intolerances.

have you eliminated wheat/gluten from his diet to test?

noddy, she is ill monthly.

she was born with chicken pox, and so she never developed a decent immunity to anything...........still has no immunity to chicken pox in fact!

anything she gets, she gets badly. she had pnuemonia 3 times before she was 2yrs old for eg, wee infections, tonsilitis (she has now had tonsils out, but instead gets pharyngitis (sp?). staph infections, twice now in her pierced ears (me feeling guitly for allowing them done).

they thought she was diabetic for a month when she was four, then it was discovered that she makes too much insulin.....her then paed at that point declared her 'bizarre'...

now this.

I am tired of there always being something new, and no proper DX for her....and in the meantime, if she gets cold (even now), she will go into 'rigor' (like a febrile convulsion but as she is 10yrs old now they call it something else). she has no internal thermostat, or at least, no way of controling it so they say...........all confusing and not fun as no symptoms seem to fit anything.

noddy, she is ill monthly.

she was born with chicken pox, and so she never developed a decent immunity to anything...........still has no immunity to chicken pox in fact!

anything she gets, she gets badly. she had pnuemonia 3 times before she was 2yrs old for eg, wee infections, tonsilitis (she has now had tonsils out, but instead gets pharyngitis (sp?). staph infections, twice now in her pierced ears (me feeling guitly for allowing them done).

they thought she was diabetic for a month when she was four, then it was discovered that she makes too much insulin.....her then paed at that point declared her 'bizarre'...

now this.

I am tired of there always being something new, and no proper DX for her....and in the meantime, if she gets cold (even now), she will go into 'rigor' (like a febrile convulsion but as she is 10yrs old now they call it something else). she has no internal thermostat, or at least, no way of controling it so they say...........all confusing and not fun as no symptoms seem to fit anything.

Hi psychomum: I'm not an expert in this area but know enough to say that a single eosinophil measurement can be erroneous. Like all blood counts they need to be done at least twice to confirm any out-of-range levels. Also what is sometimes quoted on reports is not the paediatric normal range but that for adults. So before getting too worried I would wait and see what a repeat count shows, and a decent interpretation by a clinical haematologist.

My admittedly scanty knowledge on the cyclical neutropenia is that it is not an indication of malignancy and one of those things that can improve with age. Once the cyclical nature is confirmed, a possible treatment would be to receive GCSF (granulocyte colony stimulating factor) to help the bone marrow to produce more neutrophils. I would have thought that once the neutrophil count becomes steadier there may not be any requirement for protective antibiotics, and indeed the other illnesses may become less of a problem.

well, they have noted the high eosinophils on each of the bloods done so far (9 blood tests since 20th march), they were giving me the results today of the nuetrophils and the eosinophils were also highlighted in red.

maybe they are just a blip tho.. they were not out last year AFAIK, and like you say, paediatric levels might not be the same as adults.

Oh how awful for you both I think you need to get some straight answers.Immunity problems are notoriously difficult to diagnose and treat because of the cycles that they seem to come and go in.Constant anti biotics causes lots of weird readings but they are sometimes neccesary It seems like she doen't fight things easily I really hope you get some answers.Try not to google I was convinced I had MS from googling and have finally been diagnosed with b12 deficiency which although serious isn't as bad.I hope she gets better as sh gets older.

oh noddy.... re the B12. that means monthly injections doesn;t it (not an expert, but MIL's friend has it and she has reguler jabs and tests etc....and now her platelets have gone tits up {so to speak}).

we are hopeful that at some point DD3 improves. puberty will be a good test as she could go either way according to the paed.

so far she is not on the regular antibiotics, altho that said, she has had 3 courses already this year for chest infections and pharyngitis.

that all said, my WBC is odd too at the moment, so I am also needing to go back for weirdness in me. I also have low calcium and high glucose according the the last lot of tests done, but they were taken while I was anaphylactic shock so could be skewed anyway.

feel like we are in a health minefield at the mo!

really sorry to hear this

as others have said, quite likely a one off result doesn't mean anything (and I have no idea what it would mean if it did mean anything iyswim), but it's stress you could be doing without

definately stress and worry I could be doing without!

any chance your consultants office has a specilaist hemotology nurse? They are the first people I call tbh

apparently they do, but I have yet to be introduced to her in any way so have no idea who to ask for as yet.

I am in that limbo right now of having been referred and DX'd (well, semi DX'd) but not actually been up to the unit and spoken to them all properly yet.......it has all been done on the phone and email.

call the hospital and ask to be put though the specialist hemotology nurse, attached to Dr ?, they should be able to do that. Least she could talk you though until you know/see what the doctor is thinking.

thankyou lisa........will sort that out later when less headachy and I can explain and take in the info better. ((two glasses of strong wine last night........ my head!))

hope you got some answers. Its a mind field, and i normally speak to our nurse at least once a week, if not 2/3 times

didn;t get thru today. the twice I tried it went thru to voice mail and I am phobic about leaving messages

she has another blood test in the morning, so I am going to ask again with another nurse........hopefully the one who knows us best will be on duty as she is fab at being honest in a reassuring way

otherwise, I will be ringing southampton again

if you leave a message, they will call you back as they are never at their desks, as they cover clinics and wards.
good luck