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.

what you feel is normal, if that helps?

It does get easier but honestly love, none of this is anyones fault. It is just life. She is still the same as she always was, it is just now she will get some mmedical help to improve her condition and you have some more concrete answers

normal helps lots actually.......am feeling ever-so-slightly insane and as tho I am going nuts.

and the worse thing right now is trying to look at her the same as ever, instead of her with a medical problem. I know I will, it is just that I cannot get past that guilt feeling at the moment.

and it is making me short tempered with her too, especially when trying to put the magic creamon for her blood tests and she is screaming at the boys "stop staring at me", not getting that they are staring at the screaming banshee rather than the creams etc.

normal helps lots actually.......am feeling ever-so-slightly insane and as tho I am going nuts.

and the worse thing right now is trying to look at her the same as ever, instead of her with a medical problem. I know I will, it is just that I cannot get past that guilt feeling at the moment.

and it is making me short tempered with her too, especially when trying to put the magic creamon for her blood tests and she is screaming at the boys "stop staring at me", not getting that they are staring at the screaming banshee rather than the creams etc.

I don't know what to say so I will send a huge hug and a massive bar of vertual chocolate.

Aww don't feel guilty love. You have nothing at all to feel guilty about. You are a good mum. End of

virtual

aww muffnbaker, thankyou (and I think one back at you too).

ladyfio, days like these, find it hard to see the 'good' in me. I feel more like 'okayish at a push' today.......

Sorry but I only have two DSs and IMHO to be a mum to 5 kids is astounding.

To cope with 5 kids when 1 or more have special needs is incredible. Don't you dare put yourself down.

I think you need to get your DH to give you some attention by the sound of it.

As LF says things will get easier...

.. and a large vitual glass of whatever you fancy coming your way....

BR

thankyou BR, will need to be a glass of coffee right now.......got the children to sort out (altho wine later would be good).

ach, I know that come next week or so thing will seem easier again. these feelings never last majorly long for me normally.......altho this one seems to be dragging its feet (mind you, thats probably because of all the blood tests going on).

hi

It does get better honest I have a dd with sever immmune problems that is pretty rare to . and she is on lifelong antibiotics.Not helped by fact shes allergic to most
Have they told you what kind of antibiotics she will need to take
she to hates the regular bloodtest takes 3 of us toholdher and shes tiny little thing

I to had the guilt thing as in our case is probably genetic to along with that she has 2 other medical problems that one is certainly genetic and complicates the immune issue A1ad,But wanted to say juust keep going it does get easier to coem toterms with well as near as you can do ,I still have bad days to .

Hiya, you sound like youre doing a great job, the diagnosis will get easier to deal with in time and I agree to cope with all those kids and soem with sn youre doing fantastic! I just wanted to suggest have you looked on contact a family, i think thats what its called anyway, there are people on there that have kids with rare conditions and you may find someone with something similar if not the same?
Thinking of you hun, and have a glass of wine later when kids are in bed x

no idea as yet on the antibiotics pheonix, am awaiting the email from the paed in southampton (altho that seems to be a long time coming) so I then know that the docs have received it and go to the GP's.

when did you find out with your DD??

jenny, where do I look for contact a family?? is it on the internet?

she was turned 18 months , we had lots of hospital vistis for things that should not made her as ill as they did and when she becam ill she went for it .
Was only me breaking down in front of a paed that my older ds was under and begging him to do something that things started happing he took her notes away to read .then came back agreed with me something was not right and ordered blood tests.

Like your dd it was shown that all her childhood injections had failed , so that was enough clue for him to start digging deeper.

she has a iga and igg deffceincys along with a1ad which is a inherited form of emphysema and ufortunley she also has cystic bronchestis ,

But shes a fighter the trick to keeping her well is vigliance and extra antibiotics as soon as a problem mild fever etc your probably become first name term with gp/paed/chemist,

My yahoo [email protected]

feel free to email me know how hard I found it to deal with and like you made so much harder as knew no one else who sufferd with a long term immune system failure

oh and DD is now 6 and survied and keeps fighting long after they told me she wont make it through this one. other than her being tiny you would not notice how ill she is .Her pics on my profile

ah, see your DD sounds very similar to mine, only I had a crap paed to start with who just kept going on about it was down to luck ().

before the age to 3, she had had 36 admitances to hospital with things like pnuemoia, tonsilitis, urine infections, ear infections, many many many gastro bugs, staph infections, strep throat (to name just a few), and still it was down to luck!!

than at 4 they found er to be diabetic, she was in hospital and then home for a month on insulin, then they tested her glucose levels as she kept going into hypos, found them to be normal, tested her insulin, to find she made 5000 when the highest should be 500, and so they labelled her bizarre.

from the age of 5 to 8 I have fought and fought for a second opinion, and in fact it was only reading something in a news paper about a similar child that everything added up, and she (the paed) finally agreed to refer me (but only because she was "tired of looking at DD3 and not finding out what was wrong" (to say I was insulted and shocked would be an understatement, but as the paed is now battling cancer I feel it wrong to complain about her)

anyway, upshot is that the new paed agreed with me, and we have now spent 2yrs being referred back n forth for specialist paed appointments, plus many bloods, plus me obviously sorting out my other children (soa few cancelled appointments on the way), and here we are.

and there may indeed be something else seeing as her platelets and eosinophils are also too high, but have no idea right now what that means, and altho I am waiting contact from a blood nurse I think they are either missing me (due to the many appointments), or have not got the message.

seriously, am getting so stressed about it I want a brick wall to bash down!!!

oooh, your DD is similar to mine, she too is ark with curly hair (my only dark one actually).

and you too have the dyslexic struggle. my DD2 and DS1 are dyslexic!! (plus DS2 we think, altho it could be ADD, not sure as yet.....got his appoitment for that this coming thursday)

not really. I have my DH and my friends and here, nothing additional if that is what you mean.

I don;t know where to go for it tho. I mean, out of my friends, we all have varying things going on with our own families, so I find it unfair to do a me me me thing (which I know you understand).

as for family.....mine disowned me when I announced DS2 was on his way, my own mother has schizophrenia, and MIL and FIL, wonderful as they are, have their own lives. plus, they are here for the hospital admittances, so I feel guilty asking for anything inbetween times.

which hospital are you under do you see a immunlogist at all?

I was lucky as paed i broke down in front of specialised in immunlogy,Cf and allergies and knew i was not one to make fuss less it was needed otherwise think were would been just left in limbo

yeah we done the puenmonia, chest infections, staph infections, Meningitis the lot we had good year so far only 9 admittiances to hospital .we are on first name terms with staff .

But know what you mean about appoinments seems be same way here ,

And i second Riven we all go through stilldo the if onlys .I do still now with ddand ds 3 paticulary.and same as Riven i worry about my other dc and time i miss with them

www.cafamily.org.uk/index.php?section=861

contact a familylink

we are under poole for the basic paed, and have been referred to dr faust in southampton for the rest, altho not certain if he is an immunologist or haematologist TBH.

I have only seen him the once, and that was when DS2 was admitted for his belly issues (he has someting similar to IBS), and so the visit was not a good one (he came across very patronising, I think I came across as scatty as I was struggling differentiating between DD3 and DS2 for the issues being discussed. he shouted at me in the end.

I have tho spoken to him in te last couple of weeks due to the referral going astray, and he did seem better (once I had gotten over my tearsa bout the blood tests being so awful and DD3 being sick with fear during them........they were going thru her knuckles as he veins were collasping), but I am now awaiting his reply to my email and am in limbo again.

I am getting to be on first name terms with the paed secretaries now...........and the other day when I had to go in with all my five, felt faintly famous as they knew all of us by name, we knew all of them, and we got stared at by all the others in the waiting room.

hmm for the immune problem we see immunlogist and found is best way to go though we do have whole team of other drs involved with her care

yes ourlocal one can come across as bit patronising but once though it hes been fantastic hell we send xmas/birthday cards for mine and his kids

dd has crap veins now due to the amount of tests /ivsthere now considering a port under the skin least for the ivs

...typed out stuff and it is lost damnit!!!

riven, thankyou for the idea. I will head to the GP......he is great luckily.

pheonix........me thinks I need to investigate what it is he specialises in, and hope that once all this is up and running we get to meet everyone we need to.

on the antibiotics note, do you have any idea what the long-term implications could be?? I am ok with her having them, and understand why etc, but the long-term-ness of it all worries me. not least because you hear and read so much about antibiotics losing their ability to fight things over time due to over-use etc.