Newbie to the SN boards, hoping its ok to come here......flame said you are all lovely - Finally got a DX for DD3, after 9 long years, so why do I feel so tearful and crap......surely I should feel relief

[PsychoAxeMurdererMum]

I know technically this is more a health issue with DD3, but I need to get out how I feel, and see if this is normal.

DD3 has been suspected (mainly by me) to have 'cyclical neutropenia'. I have had a HUGE struggle with her first paed, who finally brushed us off with the wonderful words "oh, DD3 is just bizarre" . (how fucking DARE she......she made me feel like shite that day).

anyhooo......stood my ground, got referred to a very nice man, who actually listened and agreed to test her.....which led in march and april to 8wks worth of twice weekly blood tests (which as you can understand, on a 9yr old was not fun even if she did have 'magic cream').

anyway, since then, even tho I have had the results on a graph showing that what I suspected is true, I have not heard anything leadin me to think all was ok.

Not So!

I finally get to see the docs.......seems that they have had info going between them, plus there were two cancelled appointments in the summer (1 by them, 1 by me as I was ill), and it has just been bad luck really that we have had to wait.

so, today we go, and I have DS2 as he is croupy, and not expecting anything, and they say......oh, yes, she does have this, you were right, she now needs referring to the 'big bods' in southampton for specialised treatment, she now needs high threshold for antibiotics (nothing new, me and her GP's already do this as we know her so well), and we will be writing to the school etc to let them know more too.

..........huge range of emotions now. part of me feels releived, I have been listened to, the doc today was lovely as she said I have a good understanding of it all, nothing changes regarding DD3, she is still the same child just one with (FINALLY) a recognised condition.............and I wanna curl up in a ball and sob!

I guess some of it is the emotions from the last 9yrs coming out......there is a reason for it all, I am not making it up, she is not bizarre, we are not a neurotic family, but but but..........

and arghhhhhh

and breathe.

is this normal tho?? surely now I should just feel 'thankgod'???

welcome! i have lurked on the allergies board for a little while now (DS5 has some problems in that area too) and recognised your name! oooh the last allergy tests hope your arms have healed!

anyhoo, onto this thread, i understand that each month your immunity (as a woman) has to drop a little in order that the body does not 'reject' or 'fight off' the possible pregnancy occuring each month. Do you think that is whats happening with DD? if so, then at least you would be prepared and should be able to tell roughly when the really poorly phases may be about to happen.

Well done you on sticking with it, you have done your DD proud!!! congrats again, Im sure give it a couple of weeks that the initial roller coaster of feelings will subside a little, as others have said: be gentle with yourself now, you've done a fab job its time to relax just a little.

sorry....have been out with drama runs and having to talk to the dance teacher regarding DD1's future prospects with the school (she wants to train as a proffessional(sp??) dancer).

regarding DD3 and how she has taken it.......I am afraid to say she saw my tears which scared her a little. I did speak to her tho before she went back into school. Told her that the tears are more relief that we finally know what is wrong as I love her so much, and it is weirdly making me cry as I can finally start helping her properly. Oh, and that for her, nothing is different as yet, altho she may need some more bloods taken soon and she will be seeing new docs etc. She took it all well......she knows how she feels and she is also kind of glad that there is a reason (so she can tell people) altho she cannot pronounce it yet!

I am still feeling a bit "argh" about it all (I am sat her with wine). It has been a long fight, and at times a little like a roller coaster followed by walking on a tight rope with no safety net (if yu can understand what I am trying to say??). I have now fallen, and found that there is a safety net after all, but the heart is still racing from shock (does that make sense?)

anyway......................he we go. finally on the right path, and feeling a little victorious, and also righteous in my expert knowledge of my daughter.

sometimes................MUMS DO KNOW BEST!

Big hugs!!! And well done you! It will help her- both being able to access proper treatment and having something to tell people.

Dd was investigated for the same thing 2 yrs ago (and funnily enough, in Soton), but they decided in the end she didn't have it, that it was just chronic pain putting her body under constant stress.

cory, who did you see??

we have been referred to mr faust, who we did see last august (and was very condescending), and I am not looking forward to going back as he did try to fob me off. seems I was right tho (and a big mean too IYGWIM)

not overly pleased, but if he is the man to see, then he is the man.

and I have fought enough, one more string to my bow won't be hard!!

Yeah, we saw him. (after having been referred by a junior doc). He wasn't actually too bad; he did show me the evidence and looked up the condition we know that dd does have and explained how that could influence things, and why he didn't think it was neutropenia in our case. I've known them a lot worse.