feeling so low....have fought for so long for a DX regarding DD3, finally have one, but just cannot get rid of that sick feeling in the base of my tummy.

[psychomum5]

I don;t know where to turn right now. feel constantly on the verge of tears, and am getting snappy with everyone instead

DD3 has been poorly for so long, she finally has a DX (cyclical nuetropenia), she has to go onto lifelong antibiotics, but it is so rare everyone looks at me blankly when I tell them what it is, becuase of the rarity I am finding it completely impossible to find any support from someone else who knows what to expect, has been where we are etc etc.

and the guilt........god I feel so guilty. from the small amount I have come across it is likely to be genetic. If it isn;t, it is because she was born with chicken pox, caught from me, because I had no immunity...and altho she and I have been vaccinated, it hasn;t taken in either of us (which does suggest that there is indeed a problem with my blood too), and I jsut feel this is all my fault.

and then she is struggling to cope with all the blood tests she is having to go thru at the moment. I tried to get the course of tehm made shorter, only that backfired as it has thrown up something else that is too high so they want to find out if THAT has a pattern, so we have a longer course again.

and in the meantime I feel as tho I am neglecting my others, and yet the boy need me too as they too have hospital appointmenst this week (one in bournemouth for braces, t'other in southampton for an ADD referral with a psychologist).

and in the base of my tummy is the leaden sick feeling, my heart feels wobbly (not literall, figuritively speaking IYGWIM)......and DH wants my attention, the girls need me as teens need their mums (if only to yell at), and I am just spinning spinning spinnning..........

I never signed up for this!

I k ow parenthood is about getting on with what we are given, and feeling amazed and astounded with the miracle of our children, but sometimes, I just wanna get off the round-a-bout and get on a different one.

sorry for the rant..............no where esle to turn tday.

oh yes, am going over the past lots at the mo, seeing if there was a time when I should have pushed more to get a different referral etc to get her sorted earlier.

but.........................am guessing nothing would have made a difference to how I feel now, it would have just been an earlier guilt feelign without MN for the back-up etc.

yes~I know its easier said than done but try to let yourself off the guilt hook[no reason at all to be guilty~its your emotions thats all] and feel proud of what you've done for her~and she is still the same lovely dd you always hadxx

oh that I do know. she really is lovely.

I just wish I could take all the bad out of her and leave her healthy forever. slightly unrealistic, but I can dream.

aww how old is she psycho?

she is 10.

she was born with chickenpox and has been so poorly on and off since, pnuemonias etc, so pretty much never developed an immune system. the DX has been a battle to get for a long time as the original paed we had just labeled her as 'bizarre'.

that is probably what this is about to, my anger at the original paed who brushed my fears away for so long!

of course it is ~how difficult for you!
I hope you find all her treatment straightforward from now onxx

I hope so too. would be nice to get into coping and calm mode, as opposed to fighting for a DX mode.

we have no problems now , hell the chemist leaves me to make it upmyself saves all the in and out of drs to reorder we get a months supply t a time and yep dd is on a huge dose as well especially considering she is such a scrapy little thing .
And yes they wuld be admistered in hospital though there i talk of looking at home done especially as she has so many other meds at home ,nebulisers and physio.Also im pretty used to handling needles as ds has a 24 hr pump fittedfor ventolin for 18 months

And the guilt thing I had it to all the if i pushed harder would someone have listerned sooner so preventing some of the lung damage this is due to the coplication of the bronchiectasis rather than just the immune
but realised I did what I could and was the system that failed her not me same for you and your dd
you did not fail her the system did

we have no problems now , hell the chemist leaves me to make it upmyself saves all the in and out of drs to reorder we get a months supply t a time and yep dd is on a huge dose as well especially considering she is such a scrapy little thing .
And yes they wuld be admistered in hospital though there i talk of looking at home done especially as she has so many other meds at home ,nebulisers and physio.Also im pretty used to handling needles as ds has a 24 hr pump fittedfor ventolin for 18 months

And the guilt thing I had it to all the if i pushed harder would someone have listerned sooner so preventing some of the lung damage this is due to the coplication of the bronchiectasis rather than just the immune
but realised I did what I could and was the system that failed her not me same for you and your dd
you did not fail her the system did

Phoenix, that is a much better way of looking at it! The system failed, not the parent.

oh pheonix, thankyou for that last line...I will try and hold that thought

will keep fingers crossed for you that she can have the IV meds at home.

Oh psycho sorry you're having such a shit time. No matter how long you suspect something being wrong, a diagnosis is so final and just hits like a tonne of bricks.

Please go easy on yourself, you are still absorbing the news and I think maybe we all have to go through lots what if's before we can get to a more peaceful place where we can just get on with being practical, and shovel the shit life keeps throwing at us

I can barely string a sentence together tonight, but want to send you a whole lot of love, and tell you I think you are fucking brilliant

Oh yes, and thank you sooooo much for sending over my cardi, and the massive and very rl bar of chocolate

aww sazisi, thankyou

and am very glad the cardie reached you finally (am so sorry for the delay), and glad that the choc made you ...

as for the DX, yep, very much feeling lie a tonne of bricks hit TBH, altho pouring myself out on here is helping more than I thought possible.

well, went to collect the meds this morning, and my lovely doc prescribed one months worth, of which three bottles are to be made up by me at home.

saves me running about quite so much

yay for your Dr