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

saying that, I ignored you.

how is your DH getting on now....last I saw on your thread he was needing to go back in......am hoping I have missed seeing him home again.

his doing well, his home now and chemo is working well. They said about a year before remission, but his looking so much better, and has managed a few good days out with me and the girls.

thats really positive.

how are you coping with it all tho?? the worry and the keeping things normal as possible.....

LOL I have no choice but to cope tbh.
Things are easy to keep normal when his home, not got tests, or appointment and when we arent trying to aviod all the sick people!!
nah we do ok thanks

lisad, such is the life of wives and mums.

you should give yourself a pat on the back.

as for me, am in a worse state today as platelets apparently are high too on three of the blood reports, and she also has reactive lymphocytes.

no real idea what they mean as yet until I speak to someone, (but tis hell trying to get thru......must be busy up there!).

oh sweetie, what a bugger. Anymore news? I cant see how they can give you these results but not ell you what they mean stupid sods. If you want to chat my msn is minx101 at hotmail dot com, just be sure to send a message about who you are, otherwise i wont add ya

am adding you now

oh, no news....assuming that they will ring me next week now.

I emailed them 2wks back and it took them 2wsk to respond, so not holding out hope for rapid response.

that said, it cannot be majorly serious as otherwise they would have her in for lots of bloods, but even so, all this has left me with a sick feeling in the bottom of my tummy that won;t go.

hell can be based on days like this!!!

oh, and if it says I am offline, it doesn;t mean I am..........I hide lots as otherwise my teens bug me and irritate me.

friends know to buzz me anyway

added you too but wont let me send a message not sure why. im online atm

I will try

I have just seen this,hope you get some answers Monday, it's not right to be left waiting but try not to worry, I know easier said than done which is why I suggest much wine for medical purposes

thankyou jes.

I hate this waiting game!!!

any news today?

no news yet.

have been on a run around of hospitals the last few days, plus my house is cleaner (side effect of the spinning head feeling of keeping up with everything going on, plus for the sparkling kitchen).

had DD1 in dorchester hospital yesterday (till very late, about her knee), just done DS1 and his brace fitting at b'mouth, off to southampton with DS2 shortly (he has ADD and Dyslexia assessment appointment), then poole again with DD3 tomorrow and maybe more answers then............

I might be about later, or definately tomorrow tho on MN.

bastard bastard fucking docs (or someone at least), lost half the damn note

and now

today

the silly SHO doc I spoke to decided that as her monday blood result was 'normal' there is clearly nothing wrong with her.

fuck the fact that the nature of this illness means she has normal bloods for 2wks then crap bloods for a week (in a cycle, which is WHY it is called cyclical neutropenia)..............oh no, it was normal this week, so she needs nothing.

am now waiting (AGAIN), for the secretary of the doc in southampton to ring me back.

otherwise, I am gonna go camp out somewhere so they can deal with me in person!!

So sorry to hear about all the problems you've been having, not to mention DD!

Just a thought, but have you had a look at the website for the Primary Immundeficiency Association? They have quite a good forum where there are several paretns of children with various immune problems, including, I think, cyclical neutropenia, so it might be worth a quick gander.

here

Good luck.

oxcat, thankyou. will have a look tomorrow once I am calmer

notes were found............they were with her local paed rather than on the ward where they were supposed to be.

anyway, last bloods taken today , and she is now on her long-term meds - azithromax (sp).

one step sorted at last, now got the school to see about what needs she needs setting up (ie, for if she needs medication at school etc).

still in a mood tho. DH not overly sympathetic.