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.

dd takes azithromax long term .And yes there is concern when she becomes ill though that is more to do with fact shes allergic to pencillian and eurthomycin .So its the only oral antibiotic we have .

when shes ill she has more than the recommended dose for her age/bodyweight , or ifits nast we move to iv quickers but it does become a balancing game and I hold my breath every time she coughs ,sneezes or runs a fever

Hope you don't mind... googled him:

www.som.soton.ac.uk/staff/profile.asp?snf

derrrr

www.som.soton.ac.uk/staff/profile.asp?snf

ah yes, more of a complication.

I too am allergic to lots of drugs (both the ones your DD is, and 3 others.....makes me being ill fun), and DD3 has already developed allergies to certain things so we have a fear of her developing allergies to penicillin (DD2 is allergic to this already so there is a high possibility).

I too hold my breath when she gets a temp.......and getting a chill makes her more prone so she is always well wrapped up. plus october to april is hell in general as she gets poorly monthly. two chest infections already just this year since january (altho the hope is that this will be sorted obviosuly by the constant antibiotics)

BR, thankyou

that makes it easier.......so, she is under the right man then by the look of it.

the CAF doesn;t seem to hold much hope tho. there are a few with similar things, but they are old posts in the main (altho thankyou for the link)

your one of the few i talke dto about it, normally post about ds .

what about asking your paed if he can put you in touch with some other parents locally ,We have a specialist nurse and she helped me find other parents to talk to .

yeah dd has few more she cant tolerate thats her only oral option shes also allergic to several iv ones ,

and yes he looks like good one w ehave shared are between local /the brompton for the lungs and great ormand street for anything else .

One tip i found helped that if hse has to have appoinments/test we always try to do something fun after even if its just going tto macdonalds know this can be hard with other dc though with childcare

Pyscho, I think you are really amazing for having 5 kids, let alone coping with Sn as well! I have 3 and struggle sometimes, so to have 5....wow!! Hats off to you.
What you're feeling is completely normal re. not being able to look at her the same. I was the same with DS2 when he was dx with autism. Its like a fear of the unknown and sort of grieving for the healthy child you thought you had. Fast forward one year on, we are now in the middle of a dyspraxia dx, but we are finding family life easier as we can now deal with the issues Ds2 has.
Good luck with the hopital appointments, I hope they Dx your DD soon.

pheonix, I will ask once I get up there. hopefully they know of people who are nearby but not on the internet (or at least, not anywhere I have looked at so far), and so DD3 can get to maybe meet someone who knows what she is going thru. I have to say, I am glad there is someone here to talk to. I was beginning to despair of ever coming across anyone who understood.

5inthbed, thankyou. I hope to get to the stage where I am breathing again (or at least, not spinning anymore IYGWIM)

oh god, that sounds bad (the comment about despairing of not meeting anyone who understood).

I get that everyone on here understands the issues surrounding medical needs/SN needs, it is the antibiotics and blood issues I was talking about.............IYGWIM.

clanger, thankyou

i do why dont normally mention dd to much ,in so many ways she is nt her problems are all medical and guess i have had time to learn and deal with i but remember the early days so wlel so feel free to ask away will help if i can

bad bad bad day.

wanna hit someone hard with a hammer

you ok?

and yep i know that feeling

sorry yr having a cack day psychomum. Popped by to say hello and echo what everyone else has said about feelings of guilt being normal to go through but WRONG

why the hammers then?

joins in phychosmum with wanting to hit someone with large hammer

sorry for the cryptic rant earlier

pretty much had a shite week with DD1 having an appointment in one hospital (for her knee issues from the car accident we had 18mths ago) that was 30miles away on weds (and he was a condescending wanker lovely man!), then DS1 for his braces fitting yesterday in b'mouth hosp am(that went well), DS2 in southampton yesterday pm for 3.5hrs (we need to go back for another 3hr app. next weds as they think he does indeed have ADD) and then bloods again for DD3 which went badly.

and then...............

the paed has still failed to contact us with the meds she needs, so I rang the GP, he knows nothing, so asked at the bloods app. this morning to be met with blank faces and an admittance that half her notes have gone missing.

arses and fuckwits the lots of them I am feeling right now.

still, the ranting (nicely, was more of a sobbing) on the secretary has worked...............the paed back again this afternoon........she is to go onto 30mls eurythromycin daily until sept and see how she goes, and then more bloods and a proper assessment for her immune system to see if is a life-long one or a temparary one.

I personally feel it is due to her being born with chicken pox, and as it is still causing major issues at the age of 10, it is life-long, but we live in hope.

am on wine now, life is better (if not ok.......IYGWIM).

is all ok with your pheonix????

Hope bottle glass of wine has helped

yeah has spent afternoon talking with the wanker man from childrens disablity team ,telling me all the things they can not do to help ds as he does not meet the crieta they set but he then spent ages telling methinhgs that i should be doing see rant

But am going see if can get hold of dd one she was fanastic support in the early days and is always around if i need to talk ,,

goodthat they finmally got some antibiotics sorted and yes we have regular yearly checks see if dd has suddenly grown immune syytemove rnight but paed admitted after last test her results were so low that they are still not registing on the scales they would normally use

for you pheonix. sounds like a ragh day for the wankers nice medical people

finally got the emial thru, and the meds sorted. DD3 is now on azithromax (sp?) until we go in september, and then see from there how it is helping etc to next steps.

one step sorted at last, altho right now am still in 'grump' phase and not seeming able to chift it.

Hi psycho, just to confirm what the others have said, it is so normal to feel this way, I also had counselling for DS2's illness/ SN although this was before diagnosis. I just knew something wasn't right and when it is confirmed you have mixed feelings I think. Alongside a certain amount of grief I also had such anger that I hadn't been listened to and that he had endured years of pain that could have been avoided.

He also takes daily antibiotics and probably always will do. I worry in the long term about this but short term we were advised to give him a probiotic drink every day to help his tummy.

It's hard to switch your feelings from anger and frustration with medics to happy smiling mummy with your children as well.

You are doing a fab job though you know!

thankyou for that. yes, I find the switching hard, especially when I want to batter them with hammers and yet have to hide that feeling from the children.....

will look out for probiotics for her.......thanks for that tip

ah thats the same as dd on .And they have defintley helped her.We try to dodge as many chect infections as it aggravates her other prolems with her lungs.
though we are looking at switching her to iv courses of antibiotics instead .
I have her Paed listed on my speed dial i been lucky as hes been fantastic with her and with me

psychomum~recognise that experience of looking at your child through a fog of guilt and seeing them differently and trying to overcome it.
It is because you are upset,and care about her i.e. a good mum
honestly ! xx

do you have trouble getting it?? went to the chemist this morning to fill the script and they need to order it in, and said that anywhere else I went to would have to aswell.

mind, she is on 10ml per KG, which on her weight is 340mls per day (altho I think he has done it soe it is in condensed form which might be the issue).

I told them this is a long-term script, they looked mildly shocked. am hoping it does indeed combat the chest infections!

for maybe needing IV meds. will that need to be done in hospital??

oh forevergold, thankyou. I need to get past that guilty feeling right now, your words have helped

good ~fwiw i think it comes from ,when you get the dx,going back over the past,and also sort of feeling it for them~its hard and horrid but it might help to know its normal.